Raising Ella Lynn

So many things, so little time - Some funny, some sad....

2012-01-03T22:06:00.000-08:00

One thing with having a blog... It's a bitch to keep up with...

Did that get your attention? ;) Happy New Year! I'm Baaack....

Seriously though, between 3 kids, a demanding job, a house, a husband, a need to go to sleep at 8:30 on the dot every night and watch Teen Mom 2, I don't have as much time as I would like for the blog. I also don't have that much to post. I mean, I could tell you that..

1. Reed thought every little girl in his class had Down syndrome and totally yelled that out loud at the holiday party in his class while I was two feet away trying to 1. Not shrivel up and die from shock of him being so bold and SO wrong 2. Smile at his innocence and 3. explain to the other moms that it is totally OK for him to think that - What - You got something wrong with Down syndrome other Mom's? Yeah, that's what I thought. :)

2. Ella said her first word. Yep - our little girl is a talker. Well, I mean a one word talker when the mood so strikes her and the moon and stars are aligned and she is wearing pink with polka dots, but look, she said "Up" while pointing "Up" on the couch and said it for an entire week. The magic word hasn't been repeated since. She's fickle like that.

3. Ella speed walks. Like almost a good speed walk, but missing the coordinated arm movements that make you look cool at the gym. Little girl can hustle. She hears the fridge open or her brothers near by and - whoosh - speedy baby is off to get to the scene. It's adorable. A little frightening too as I am waiting for her to face plant when speedy legs go faster than speedy torso, but for now, its cute and a huge milestone.

4. Mike and I had 11 1/2 days off with the kids and didn't go crazy. Or kill each other. That would have made an awesome blog post though. We also spent 4 days with his mom, sister, her fiancé and 2 grandparents in a cabin the size of my computer monitor. We are all still here to reminisce about our cozy time together and the freezing cold temperatures at night. Ahh, I love the Holiday's.

5. Ryan smashed his thumb with a rock, it almost required a trip to the ER and now it looks like he paints it black to torment us with some early look into his Goth period, he has bruises on his knees from learning to ride his new Ripstick and he both angers and endears me to his 8 year old boy self and his MATURE 8 year little man self. I love both his "selfs" but am starting to see my grown up little boy is amazing and I can't wait to see him get older. I mean I can wait, but can't wait all at the same time. There are nights I sit with him just talking and wow - the things he thinks about. He has both the best and worst of Mike and I in him, super serious, super focused, super bratty. When he gets older and figures out how to harness his brattiness, watch out world....

6. Supernanny left on maternity leave and just today came back. This might be why I am blogging, to document the fact that I 1. Made it 10 weeks without her and 2. Probably wouldn't have made it 11 weeks. I mean, we were running on fumes. The sock drawer, the legos, the calming nature of her british accent, it was all missed... Plus, it makes it easier to explain to people why Reed says Garage like the British do when she is around. For 10 weeks it just looked like he was adopted - recently - from Wales.

7. We got the kids a trip to Disneyland for Christmas. I video'd it on my phone, hoping the surprise would be so awesome I could send it to Disneyland for use in their next commercial. Well - Ella is 1, had no interest in sitting still or Disneyland and Reed, unbenowknst to us had no idea what Disneyland is. Kills the surprise when the kid acts all disappointed that all you got him was a stuffed mouse. Yep, that happened. Ryan was excited but for a good commercial you need at least 2 out of the 3 actors to be good...

8. Shoot - did I post that Ella's Entourage raised 10K for her Down syndrome walk in October? I know, it was 2 months ago, but still, my little girl and her army of friends, family and supporters raised 10K! We were the number one fundraiser! She rocked the parade and her custom wagon float and wore her princess for a day hat with pride! She was amazing and so was everyone who donated to her team. We still have a lot of thank you cards to send, but slowly they are going out. P.S. - On the thank you card note - I still have her first birthday thank you cards waiting to be mailed. If you want both at once, just let me know, otherwise as you enter the house for her next birthday, I will make sure you get a thank you from the last. Yeah, better late than never. Don't worry, I made copies of the receipt so every one will know they were purchased two weeks after the party.. :)

9. Hmmm - What else has happened in the past few months. My dad and his wife had birthdays and my sister in law did too. (all important people in my world and I was happy to celebrate with them!) my marriage celebrated another anniversary (Hooray for 12 years of Michael putting up with me!) My mother in law didn't move to New York after watching my kids for 10 weeks straight while Supernanny was on Maternity leave (trust me, sometimes after a weekend I want to move and she hung in there) True, there were a few more oreo's given and a few less stern words shared than us parents would do, but she is a Grandma and helped us out immensely when we needed it most. My own Mother made every weekend better with doing the little things that help - sitting with me while I fold laundry, cooking with me, making fun of perfect people with me, going around town to buy me on sale shoes while I lounge on the boat, you know, being a great mom without a lot of recognition....

And drum roll please....... I could have blogged to tell you that....

10. Shoot - no, I'm not pregnant - although this would have been a great way to tell my family. In reality, if I was pregnant again I wouldn't tell them, I would just let them all find out when they visited and there was one more kid around. Although, given the chaos of my house already, it could take a while to realize...

Seriously, I could have blogged to tell you this - Life is a blessing.... It sometimes takes unexpected turns, but honestly, each day is a blessing and in the last few months, life has had very little to do with Down syndrome.

Mike's Dad died in July. I didn't share it because it wasn't my pain to share. When it happened, it was his and his Mom and sister's pain. They already were, but became even more so then, a tight nit clan facing a world of hurt and uncertainty that only someone who has lost a parent can understand - or face. I didn't have the words, I still don't, to make them feel better. I don't know what it feels like, I don't call my Dad for a few days and I get sad, I couldn't imagine if I could never call him again. I feel selfish for wishing my Dad was closer when their Dad is so far. I feel bad for not knowing the hurt they feel. With that and all the emotions over the last six months, I have realized that I am amazed that someone can lose a parent and still be an amazing parent themselves. Giving up that hurt inside of them to make it OK for their own offspring. Mike took his Dad's passing to mean more then a goodbye and makes sure his kids spend every day knowing he is there. He finds their passions, their "wows" and embraces them. Yesterday it was birds, today it is houses in Florida and Mike is taking it in, learning with them and being there, just like his Dad. I knew his Dad for 15 years, I knew him to be a passionate, caring person who would give anything for his family. When he got sick, it took a lot from him, but not his passion. He would be happy to know Brigid and Mike have that same passion - whether it is for teaching or running a business or being an amazing Dad or Aunt or Son or Daughter, their Dad did something right. I am amazed at what someone passing on could teach me - teach us - about being here now, embrace it, live it, love it... It's been 6 months - today - we miss and love you Big Mike. You went out with a bang and will be remembered with a bang! You would be so proud of Alice and Mike and Brigid. I promise, they haven't embarrassed you yet! ;)

Being blessed isn't always described with being happy or having money or new shoes or a trip to Vegas. It can be found in so many emotions - It's amazing - a blessing - that we have made it 6 months without Mike's Dad. It can be found in first words that only happen for a week, but now we know she is capable. It can be found in five year olds thinking every girl has Down syndrome - not because they think it is something to be made fun of, but because they think their sister is amazing and why wouldn't every little girl be as amazing as her. It can be found over folding laundry together and laughing at silly stories or Skyping with your family miles away. It can be found realizing your husband is just as good of a father as his Dad was or knowing that his mom will be OK on her own. It is knowing that no matter what, no matter who, you aren't in this alone.

Down syndrome, losing a parent, it doesn't really matter, sometimes, life sucks. Sometimes, you want to wake up and wish it was 2012 or wish you were five again or it was 2040. Well, guess what... It is 2012. Time for Ella to be Miss Sassy Pants and my family to show that they are carrying on a great legacy, a legacy that liked German Beer, parties and tuxedos! Get ready world, the Falco - Morganroth Clan is ready for you (and, as Ryan likes to say, we are also ready for the end of the World on 12/21/2012 - Yeah, he is the dramatic of the family).

With love and blessings and a reminder to hug your babies, laugh a lot - out loud - , take crappy pictures and forget to mail your thank you cards. It's OK. I am not perfect either....

Liz

Liz

Yeah - I said that (sub titled - Missing Supernanny already)

2011-10-28T17:12:00.000-07:00

Life has been pretty hectic around here lately. Supernanny is officially on maternity leave and 2 of the 3 kids have been running fevers and puking for the last 2 days. Add in busy times at work, a Down syndrome walk to prepare and fundraise for, Halloween costume getting and piles of laundry and you get a scene like what happened to me this morning.

Our doorbell rang at 9:00 AM. Since Mike took yesterday off to stay home with the sick boys, today was my day. At 9 this morning, I had on an old robe, my hair and teeth were yet to be brushed, yesterday's mascara was all over my face and I was wearing mis-matched holiday socks (different holidays - left was Easter, right was Christmas). I have no idea what possessed me to open the door, but I figured it was probably someone trying to sell me something and I would use my lunatic looking self to scare them away.

It was a woman I had never seen before holding a large file folder and dressed appropriately for a meeting she was obviously at my door to attend. My first thought was she was a new therapist I forgot about hiring, but she wasn't wearing socks or holding toys, so that thought went out the window pretty quickly. I am pretty sure I stared at her for 5 minutes without speaking while I was racking my brain for any hint of a meeting I had set. She introduced herself as Susan, Ella's new developmental case worker with the state and asked if I was ready for our goals meeting. At this point, she had to know I wasn't prepared for our meeting, I wasn't even wearing pants!

I started to stutter a bit, my mind was racing with when I had set this meeting, why I didn't put it in the calendar and if I should let her in just to be polite. I knew that last one wasn't an option, I didn't have any goals on the tip of my tounge to talk about, I wasn't dressed to sit and chat, Mike was upstairs shaving, blissfully unaware of this woman at the door and Ryan was moaning from the couch about dying or being dehydrated or something. So, instead of inviting her in or just apologizing for missing the meeting - The first words out of my mouth to her were -

"Oh, I sent Ella away so we can't meet today"

Imagine, I am dressed as if I either was recovering from an all night bender or am homeless (it was neither, I promise) and I told a CASE WORKER that I had sent my child away so she should just leave. She looked at me horrified and I am pretty sure she said "you sent Ella away?"

Yeah, a little clarification was needed before she called CPS or barged into my home to see what kind of nutcase I was. I launched into a speech about how I hadn't really "sent her away" but my boys were sick and we have our Down syndrome walk tomorrow so I didn't want Ella to get sick because she would then probably be hospitalized so she was staying at her Grandma's. It all makes perfect sense, but when you are standing at your door, looking like hell, mascara and uncombed hair everywhere, a 5 year old with mismatched clothes standing next to you and you are so embarrassed that you are talking way to fast and over sharing details that don't matter, it might just appear like you are a little crazy and could have "sent your kid away".

Instead of leaving it at that and letting her talk, I then I told her the nanny was on maternity leave, told her Reed had a fever and was missing school and missed school yesterday too (I was way over-sharing at this point), I mentioned I was normally dressed by now, but didn't want to because I knew I would be cleaning up puke all day and so I forgot to brush my teeth and well, I just kept talking till I realized I looked and sounded ridiculous.

Her response -

"Well, thank you for calling and rescheduling."

Now, I know at this point she was pissed that I wasted her time, appeared to have sent Ella away and that I don't own face wash. I get it. I set an appointment, forgot about it and was making excuses instead of just apologizing and letting her get on with her day. After she said that though, I didn't know what to say next. I didn't call and reschedule, so obviously she was being sarcastic, but I did want to reschedule, so do I say - "Umm, I didn't but can we now" or do I blow if off and tell her I will call on Monday? Instead of one of these options, I decide to take the much better route and tell her my other son was throwing up and I had to run and would email her to reschedule, I then closed the door a little to quickly. Now, I don't normally get flustered or embarrassed or use my kids to get me out of situations, but when you are standing in an old robe at your door with a woman you don't know and you look like death, I will apparantly say anything to just close the door and move on.. After I closed the door poor Reed was so confused... He told me Ryan wasn't puking and wanted to know why Ella wasn't coming home.

Yeah - Such a great way to start my day....

Since Supernanny left us to have a baby, I have lost a clothes hamper somewhere in the house, dyed Ella's new socks hot pink, realized I have no idea what the kids eat for lunch, noticed I haven't bought toilet paper myself in months and we are now out, forgot about a baseball game and a meeting for Ella, gave Reed diet sprite because I forgot to buy regular sprite and my sick primadonna's just HAVE to have sprite and missed two days of work myself. She has only been gone 4 days.... Odds are when she comes back 6 weeks from now I will have lost one kid at the mall, forgot to buy laundry detergent and not noticed until we are out of clean underwear, made pancakes for lunch one to many time and will have given up on matching clothes or getting the kids to school on time.

Almost Halloween!

2011-10-24T22:02:00.000-07:00

Sometimes Down syndrome Awareness Month takes a backseat to other things, like - My love for all things October.

I may have mentioned that I love October, Pumpkin Spice Lattes, fall colors at the cabin, skinny jeans in boots, cool nights outside with the boys and Halloween. The problem is that I am a major procrastinator. Most of October bodes well for procrastinating, but Halloween - not so much. When they meet you wind up spending 100.00 in candy at Walgreens because everywhere else is sold out the hour before trick or treating starts and your kid’s costumes are missing the little touches that make them the cool costumes.

I swore on September 15th that this year would be different. I would buy the candy the minute it hit the shelves at Target and the kids costumes would be kick ass, pre-planned homemade marvels that would make the other moms sweat with jealousy (you can still sweat in Arizona in October). Well, the candy is bought, but the costumes, umm, I don't think any neighborhood moms need to lose sleep over our homemade marvels quite yet... Ryan wants to be a Zombie and Reed wants to be Frankenstein. Not hard, you think? Even when I don't procrastinate, I still lack the creative gene that would make costume making fun and / or easy. As the days tick MUCH closer to Halloween, I am thinking that we might have another Target Superhero year coming up. I can't get the screws to stick to Reed's neck for the full Frankenstein effect and I have never actually seen a Zombie but Google seems to have every range of Zombie you can think of, from Referee Zombie to Princess Zombie, anything can be a Zombie and this just complicates matters. Does he be a real estate zombie as an ode to mom and dad or do we go high class and make him the doctor zombie? So many options, even he doesn’t know what to be.

At some point in the last 24 hours, I realized I was so caught up in making the boys costumes (that was a total lie, I am more caught up in googling what I can buy to make it look like I made their costumes) that I forgot Ella has no costume. Crap. What to make the adorable little girl. Mike likes pumpkin, Super nanny likes Goth Cheerleader (she's really pregnant, we have to cut her some slack) and I like parrot Ella (she has a really good squawking noise that would go perfect..). No one can agree. Ella doesn't appear to have any interest in anything that uses her head as an apparatus to hold a beak or stem, so Goth Cheerleader would be the front runner, but I can see her Grandma's refusing to take her picture and blaming me for lack of quality Halloween 2011 memories, so all 3 of those ideas are out. I have no quality ideas, I have less than a week to go and my vision of being the Martha Stewart of October has firmly gone out the window. Again. Ella is going to end up being the darn cow costume Target has for sale each year. I can feel it...

What have I been doing with my time since I am not sewing and painting costumes? I have spent a considerable amount of time learning how to infuse cupcakes with alcohol to make the adult Halloween much better. Crafting Zombie costumes only serves a purpose once a year, but making margarita cupcakes is a year round useful skill that can make you friends who can sew zombie costumes. Just saying... Plus, if I run out of overly marked up candy, I can peddle the cupcakes to the adults who come to the door pretending that I don’t notice they are 45 and holding a pillow case saying trick or treat for the 3 tootsie rolls I am about to bestow upon them (this happens, and it is weird and I like to tell them no, but Mike gets mad, so they always get 3 tootsie rolls, no more, no less).

So, this is how we are celebrating Halloween. Target costumes, over priced candy and Kahlua cupcakes. A wonderful trio of procrastination and perfection that is repeated each year, no matter what I say in September.

A lesson learned

2011-10-21T11:17:00.000-07:00

We recently visited an aquarium while on vacation. Aquariums aren't Ella's cup of tea. She enjoys activities that involve yelling and walking and throwing toys at her brothers. She doesn't enjoy activities that involve sitting in a stroller and looking at fish for 3 hours straight (much unlike her dad and brothers who can stare at fish for hours on end).

Ella letting me know fish bore her..

I was able to find a play area in the aquarium. It had soft climbing toys in the shapes of Nemo and pirate ships, a mini slide perfect for Ella sized little ones and other little kids to hang out with. She was a happy baby again.

When I entered the play area there were 6 little ones on a play date with their moms. The kids were 1. typical developing kids 2. dressed as if the baby gap had just finished a fashion show and these were their models 3. running around like crazy 4. talking 5. younger than Ella.

Now, these 5 things might not seem like a big deal to most people but to me, they set off my "Down syndrome Mommy radar". Well - maybe not #2, that set off my "Stop shopping at target and dress this adorable kid cuter radar" - but the other things made me sad - a right away sad. And then, feeling sad made me feel angry because Ella is a perfectly fine little girl developing along a normal scale for her so why the hell am I sad that she isn't like these kids? I tried to brush it off and enjoy that Ella finally wasn't screaming and Mike got to look at his spotted puffer fish in peace, but then - this happened.

Mom #1 to me "How old is your daughter?" Me - after a way to long pause that might have made it appear that I recently kidnapped her and don't really know her birth date - "Umm she is (insert mumble) 20 months." Mom #1 - "Oh, well, Oh, she's cute for her age". Me - "Yeah, she sure is."

Mom #1 then leaves the pirate ship Ella had overtaken and went back to her mommy friends. Mom #2 then comes over, tells me how cute Ella is and then tells me her 30 lb talking, running, apparently able to add and subtract and keep a hat on his head child is also 20 months. She asked when Ella was born and if we were from Charleston. She kept staring at Ella, she kept trying to get her son to interact with her.

Now - this is where any other mom would probably have said - She was born on February 16th AND she has Down syndrome. Thus eliminating all questions from the mommy group as to why my daughter didn't stack up to their 20 month olds.

I didn't say it. I don't know why. I just said her birthday was in February and we were from Phoenix. I didn't leave the play area, but I did start to tear up. I am pretty sure the mom thought I was crazy. She went away, Ella kept playing and all was fine, but I wasn't.

I am in no way ashamed that Ella has Down syndrome. I am not afraid to tell people, I am not afraid to talk about it or show off the "markers" that make her - her. I seek out others who have kids with DS to talk to, to relate to, to learn from, but when it comes to moms of kids her age that don't have DS. I just don't feel comfortable around them.

I should have told her Ella had Down syndrome, I should of used it as a learning experience for both the moms group and me. I should have done a million things instead of feeling sad and then angry, but I didn't. I didn't want to tell this mom. I didn't want to discount Ella to them. I didn't want Ella to have a reason to be different. I wanted her to just be 20 months old and that's it..

Now, this is irrational at best, obviously the moms knew there was something that made her different. Telling them isn't discounting Ella, it is being honest and upfront and proud of my daughter. No matter what Ella is - she would still be 20 months old, so telling them wouldn't of changed that, it would of just clarified things. I just didn't want them to pity her or and this sounds horrible - be thankful their kids don't have Down syndrome. I didn't want the 3 moms to go back to their huddle and say - "I am so glad that isn't us.." Because if they really knew us and Ella they wouldn't say that but they don't know us so maybe they would say it.

I lost an opportunity to share about Down syndrome and Ella. I let my own insecurities get in the way. This was the first time I had really been in this situation and it was uncomfortable. I was caught up in watching the other kids walk and talk and run and use straws and I forgot that my little girl is just as amazing in her own ways and that those other little kids and their moms might have their own struggles and I just need to be me and let Ella be Ella and all will be OK..

Next time we are out and this happens, I won't react the same way. It's my promise to Ella.

Hawaii has charts - Did you know that?

2011-10-14T07:29:00.000-07:00

When Ella first started her therapies, I would live for the quarterly assessments. The meetings where her therapists would pull out the Hawaii charts and measure Ella's progress against typical developmental milestones. Her therapists are great - wait, her Physical Therapist is great - she wouldn't dwell on the fact that Ella wasn't at a typical developmental milestone, she would just proclaim Ella is doing AMAZING and tell me how hard she works and what our next goals will be.

That wasn't enough for me, I wanted to see this chart and see where Ella was on it. Her PT wasn't real keen on focusing on the chart, so she would usually make some excuse about being late to her next session and run away from me. Little did she know that I am a Google master and with a little help from my friend Erin we had those Hawaii charts in front of us in no time.

Once I had the chart and plotted out where Ella was, I learned that at 12 months of age, she was acting more like a 6 month old. She couldn't say momma or dada, she couldn't stand yet and she was no where near waving goodbye. This flow chart confirmed all the worrying I had been staying up late doing - Ella was behind.

I fretted over this flow chart and Ella's lack of refining her pincher grasp or batting a ball for a good week. I carried it with me back and forth to work and when Mike wasn't looking I would pull it out to map her progress again, thinking maybe I missed something before. I was just so sad that it was official - Ella wasn't like her peers - Hawaii said so.

After a week of this, Ella stood - with the couch as support - but she was able to bear weight on her legs and stand. Just like any other kid. I was so excited. I facebooked the pictures, I called everyone I knew, I clapped so loud Ella got scared and fell down. But SHE COULD STAND. At that moment I forgot all about the chart and when it should of happened and only cared that it DID happen. The next day I took my Hawaii chart out of its hiding spot and threw it away. Screw Hawaii charts. My baby will do things when she wants and plus the chart doesn't account for stubborn.

Since that day, when people ask me where Ella is compared to other typical kids her age (and this seems to be a favorite question) I tell them I don't know. Because I don't. Sure, I had 2 kids before her and should maybe remember when you are supposed to do things, but honestly, I don't remember. I mean my mind only has room for so much, plus Ella is on her own timeline. The more I push her the more she resists and comparing her to these charts isn't going to get us to her next milestone faster, it is just going to cause my ulcer to flare up. I let her explore and learn in her own way. Maybe the chart says you cruise on furniture before you walk, but Ella didn't want to - does this get her to skip ahead on the chart or counted down for missing a milestone? It just doesn't matter because in the end she still walked... Sure I supplement her play time with PT and OT goals and I use flashcards to help her learn objects and I sign with her but if you were to ask me what she should be doing right now, I don't spout off the list of 20 things a 20 month old can do and say she can't do them, I simply say "Ella does everything you see her doing and working on lots of other things".

Let me close with this: While I don't compare Ella to the developmental charts you can find on Babycenter or apparently in Hawaii, I still have a hard time when we are around other kids her age not looking at them and comparing. I have a blog post for tomorrow about a situation that just happened when we were on vacation. I have learned to put down the charts, but learning to turn a blind eye to other littles her age is harder. Much harder.

Here is a picture of Ella when she first stood:

And a picture of Ella now, standing and walking at the beach:

P.S. Please take a minute to visit the tab at the top of the blog that says Ella's Entourage and read about the Step up for Down syndrome walk and how we need your help to make her team the #1 fundraiser this year. If she is #1, she gets to ride in a buggy at the parade as "grand marshall" of the DS Network float. I am already practicing her wave so we need your help to make sure she gets to use it.

Welcome to October

2011-10-01T07:12:00.000-07:00

I love October. It has always been my favorite month. The weather is finally starting to get cool, my anniversary happens (that's in here just as a reminder for Mike), the kids are on break and Halloween is by far my favorite holiday. Before I had Ella, I had no idea October was also Down syndrome Awareness Month.

Most people know that October is Breast Cancer Awareness Month. If I was in charge of picking the month for Down syndrome Awareness, even though I love October, I am not sure I would want to go up against the pink ribbons. I might have picked January, I mean, other than my birthday nothing happens in January, or what about poor April, sometimes even Easter skips it over, I am sure it would love a little Down syndrome Awareness. March makes sense too because it is the 3rd month, but hey, we are stuck with October so we have to make the best of it.

For October, I am going to do one thing each day to raise awareness of Down syndrome. I am going to blog, I am going to stop the person at the grocery store who gives Ella a weird glance and explain to them why she is so adorable. I am going to raise 5000.00 more dollars for her walk, I am going to be out there in my community letting everyone know Down syndrome is not weird, or bad or something that makes a life not worth living.

I know my friends who have kids with Down syndrome are going to do the same. We are a small but powerful army marching against a nation that values some unrealistic idea of perfection over loving what you are given.

We are up against a lot in October - Cooler weather, Breast Cancer Awareness, Halloween, my Anniversary (sorry, just wanted one more reminder for Mike) but if we all speak up we can be heard. We all need to tell our stories - show the world that our kids are "more alike than different" and that we are a force to be reckoned with.

Today - for day one of Down syndrome Awareness Month - I am going to be in Payson, AZ - without my adorable Ella. Every minute I spend without her I realize I never want to be away from her. When she was born I remember thinking I would never want to take her anywhere and now when I am forced to be away from her, there is this giant hole in my heart that misses my little Ella Bella like crazy. That little girl makes every single minute of my life better. So, while I might be starting my awareness journey away from her, it only makes me more aware of how my life is better with her around.

I will close with my shameless plug to visit the link at the top of the blog that says Ella's Entourage and donate to her Step up for Down syndrome Team. I set a goal of 10K for her team, we are almost 1/2 way there and have 26 days to make it the rest of the way. I set a big goal because she is worth it. Every kid with Down syndrome is worth it. This money goes to so many amazing things to help support families, kids and provide more awareness in the community. Please donate if you can.

Tomorrow is an update on Ella. She is going to be 20 months in October and I can't believe how big she is now!

Ella has an Entourage!

2011-09-14T15:44:00.000-07:00

On October 29th, we will join with 2000 other people to walk on behalf of those just like Ella with Down syndrome. I want Ella's team to have not only the most walkers, but the most donations.

Why? Because she is worth it... Because all kids with Down syndrome deserve a walk that rivals the biggest fundraisers out there. Because while Step Up For Down Syndrome 2011 might not have the word cancer or disease in it, there are a lot of kids with Down syndrome living with those very things and we need to raise money to support them.

I am asking a favor of each of you. I will make it really simple:

1. Go to Ella's team website:
Ella's Entourage - Donate here!
2. Donate to her team and if you live in Phoenix, sign up to walk with us
3. Pass this on to 3 other people you know. Tell them that for what it costs to buy a Starbucks coffee, they can make a donation to Ella's team and support a wonderful cause.

If you do these three things, not only will you make Ella's day, but you might receive a giant kiss from an adorable toddler or at the very least a YouTube video of Ella showing off her dance moves...

In all seriousness, I set a huge goal for Ella's team and I want to meet it. I know a lot of people, my friends and family know a lot of people, if we could get 2000 people to each donate 5 dollars, we would reach our goal. If you can donate more, we would be forever grateful. The money goes to support so many things to better the lives of those with Down syndrome, how can you not help?

Upswings and Downswings and Wine with cool names...

2011-08-08T21:25:00.000-07:00

We got a new computer. A shiny thing called a Mac. I really like it and feel somewhat cool when I use it, but the thing is, I can't use it. SO... No pictures today. Crap, I can't even figure out how to copy and paste, I can't imagine posting pictures. My words will have to be enough until we transfer our photos from boring Mr. PC to Sleek and Sophisticated Mac.

Ella is doing awesome. Well, in the sort of awesome that means one day you are in the hospital with this:

OK, I am smarter than I thought..

And the next day you have this:

Never mind the Margarita, I swear it isn't mine....

Our lives are spent in upswings of awesomeness and downswings of "life". We try to keep up our smiles, but sometimes, the reality that is our life hits and hits hard. When it does, I know I have to remember all we have to be thankful for, but honestly, in those moments, I am not thankful for anything! When Ella shakes in frustration and Reed is screaming and Mike and I are at the end of our patience with each other, I am not thankful for how cute she is or how Reed can count to 10 or for the fact that Ryan appears to be smart regardless of how much homework we forget to do. I am just grumpy and unthankful and sad.

In these moments, I wish things were different. I wish Ella could walk or talk or point to me when we ask where Mommy is. I wish I could take her out without everyone wondering why this baby I call a toddler is so small. I wish I didn't have endless therapy sessions or bills from the state for her care. I wish I could let her get sick without knowing it will mean a trip to the hospital. I wish I could join mommy groups for her age and not be the different one. In these moments, I wish for easy.

I can't say that when I have these moments I am pulled out of them by Ella's smile or Ryan's hugs. I am most often distracted from the moment by Ella's scream and Ryan throwing something at my head. Life pulls me out of the moment to make sure we all stay safe as Reed pretends to zip line down the stairs.

Later though, when I have had a chance to get over my moment, I often think about what I would change. Would I go back 18 months if I could for a different baby? Never. True, we all say that we wouldn't trade our kids no matter what, but honestly, I spent a good deal of time the first few days of her life wondering if there was a baby magic store we could trade her in at. I wondered what I did to deserve this new life and tried to barter a few good deeds for a different diagnosis (something like - I promise to feed the homeless, go to church, donate 1/2 my income and never ever complain again if you can make her "better"). It didn't work. While it feels like 1/2 my income is donated to her care, she was never the "better" I thought I was looking for the first few days.

She is a "better" I wasn't looking for. The kind of better where you wake up and jump out of bed to get her out of her crib because you are so excited to see her. The better where you push yourself harder because you know how hard she pushes herself. The better where the smallest accomplishment, the ones we take for granted usually, mean cheers and hugs and emails to grandparents. The better where you wonder why not every little kid is as cute as her or as sweet or as loving. The better where you wonder what the hell you were thinking 18 months ago when you bartered for a different diagnosis.

Our life with Ella isn't easy. Her therapy and working with her to get her to learn is tiring at times. The difficulty in communicating with her and the sadness I feel when she doesn't point to Mommy can bring tears to my eyes. Knowing she will always have to work a little harder is heart breaking, but the funny thing is, I can already tell she doesn't care... Hard work, tiring out mommy and daddy, being stubborn to get what she wants... She quite possibly realizes exactly what she is doing....

Ella is doing awesome. Sure, we have our bad days, but my ~~baby~~ toddler is starting to take steps (8 so far) and is so cute even when in my arms at the hospital that I can't complain. Sure, I might try and it might take a football to my head to snap me out of it, but seriously. She rocks. all 18 months and 16 pounds of her.

P.S. Not only is she taking steps, she now full on kisses me. Slobbery open mouth to my cheek kisses, but it's a kiss and quite possibly the best kisses ever.

I would leave you with more pictures but I can only figure out how to do the ones from my iPHONE, so that limits us to the ones above and this:

Wine people, just wine... After a day I mentioned above, sometimes, a little wine that uses the word wanton in the label has to be in order.....

Silly Toys R US...

2011-07-20T22:19:00.000-07:00

I am sure not many people noticed, but the newest Nordstrom’s catalogue features a boy with Down syndrome. Not in a “special needs” kind of way, but in a look at how I rock this awesome leather jacket kind of way. I love it. Target had a little girl with Down syndrome in their ad a while back and I couldn’t stop smiling for an entire day thinking about how adorable she was.

Whenever a little one with DS shows up as a model, you always hear about how Toys R US also uses kids with DS as models in their “Differently Abled” catalogue. This kind of pisses me off. Have you ever looked at this book? It’s all the same toys that you can find in the regular catalogue, but they throw in some long winded description trying to make Thomas the Train sound like the key to making Ella walk and add a few quotes from parents and well, there you have it, all the ingredients you need for a differently abled catalogue. Look, I am all about finding tools and toys to help Ella, but seriously , don’t call your catalogue something special when you take the same toys I buy for my other kids and package it to “speak” to us parents with kids with special needs. If you are trying to be helpful, here’s a thought - Reed, my second born, is a handful, I would love a catalogue that addresses the needs of a second child and tells me which toys don’t hurt as bad when thrown at siblings. Or which toys are the easiest to remove from noses and ears. Don’t leave the pretty descriptions and parent quotes to the “special needs” book, don’t parents that read the normal catalogue want this stuff too? Am I only concerned about the learning aspects of toys for Ella and my other kids just get what is on sale? Why the separation Toys R US? I don’t like it… If you feature a toy in your regular catalogue that would be a great toy for a little one with developmental delays, just tell us right then and there. Sure, there will be those parents with the perfect kids and perfect lives that don’t want to sadden their minds by thinking that somewhere out there are parents who look at toys as more than a bargaining tool to eat all their dinner. To that I say “You don’t have a special catalogue just for their ugly kid, so why have a special catalogue just for my kid?”

Ok, well, I don’t really think that, but seriously, ever since I learned Toys R Us had a special catalogue for “differently abled” I haven’t shopped there. Again, there are times that I think it is great to showcase tools and toys just for those with Special needs, but make it actual tools and toys that were developed specifically for their needs, not the same toys re-advertised as Differently-abled because you put them in the hands of little ones with DS. AND while you are at it, use our adorable kids in your regular catalogue as models. You would probably sell more Thomas the Train that way.

Just my two cents. Ella doesn’t like Toys R Us anyways, she prefers online shopping - or napping on the beach.

Did you know I have a sister in law?

2011-05-31T23:11:00.000-07:00

~~~~Back in December, I wrote this for my Sister in Law's Birthday. I didn't post it as I never could finish it without crying and not knowing how to end it. Tonight, I felt it was time. So - two posts in one day and a post about someone very important to me. Happy almost 1/2 birthday Brig...~~~

You know how it has been said it takes a village to raise a child. Well, in my house, it takes an army. A battle ready, precision timed, quick thinking army. We have boys in this house, wild boys who would, within 2 minutes, take the village hostage and have them hog tied in the bathroom. We have to have the army ready to go at a moments notice, ready to counteract tantrums, plow through homework, decipher Reed's stories and stand up to Ryan. Oh, the army has to also be ready to blow kisses to Ella, sing her silly songs and change a diaper in 5 seconds.

I like to think of my husband as my second in command in our army but in the past 6 months, there has been a well kept secret around my house... Her name is Brigid and she is my secret weapon.

Brigid teaches Kindergarten, Brigid likes babies, Brigid is easy going, Brigid likes wine and vodka and swimming and most of all, Brigid loves the Ella bella and Brigid keeps me sane. Oh - for you new blog readers - she is also my sister in law and currently occupies our downstairs bedroom. I met Brigid a few days after I met Mike just about 15 years ago and yeah, at 11, she wasn't quite my idea of a cool sister in law yet:

but she had potential, and I like to say that I had a hand in making her as beautiful as she is today (eyebrow waxing as bonding time never hurt any friendship):

Right after Ella was born, I will never forget having to tell our family - our Army - that Ella had Down syndrome. I remember blurting it out in a quick breath and crying heavily. I remember my mom and Mike's mom being so calm and I remember Erin running to Barnes and Noble in what had to be the most sad/ confusing/crazy book shopping experience ever. I remember my Dad getting on a plane to be with us and I remember Mike being my rock. I also remember Brigid - vividly. She cried, but she also kept telling me it was OK. She smiled, she acted so different than the rest of us. She wasn't upset and she didn't appear sad. She already knew what would take me a long time to learn. We were the lucky ones to have Ella in our lives.

Brigid is a teacher. You know how some people have a job that is just perfect for them? That explains Brigid. she could do nothing else but teach. She l-o-v-e-s it. In a way that I could never understand, I mean, I like kids, but 30 five year olds 5 days a week, umm, not my thing. Brigid actually loves it, like she looks forward to Mondays to see her kids, she gets to know them, their likes, dislikes, their siblings and their learning styles. When we had Ella, she was the first one that told me it was going to be OK. Ella was going to be just fine. We were going to be just fine.

I don't know what it was, but she knew. Out of all of us, Brigid had more experience with kids with Down syndrome and it was that confidence from her that kept me thinking it wasn't all so bad. She would sit with me for hours, watching Ella, listening to me babble about lost opportunities and sadness and tell me she knew it was going to be OK. That next school year, she pushed to have a little girl with Down syndrome in her class and she shared happy stories with me of how amazing she was. She came home every day with stories of success and happiness and songs sang and normal kindergarten stuff, even for her little girl with Down syndrome. She made me realize that Ella could fit right in. She refuses to see missed milestones and steers me away from google searches gone awry at just the right moment.

I am an only child and I think of Brigid as more of my sister than my sister in law. I won't lie, sometimes I can be mean and she can be clueless, but those moments are fleeting and to see her with my kids and her love for them is so amazing.

She goes everywhere with us and there isn't one awesome trip that hasn't included her. From our enchanted week at Beach Village in Coronado (and every trip there since) to Tahoe and Montauk and anywhere else we have dragged her to, she is a trooper. She puts up with my whiny kids, she puts up with Mike,

she puts up with me.

and she cuddles with Reed

Since she has moved in with us, she has had her share of being my "second in command". She can control the boys almost as good as Mike and she even did the dishes the other day for me. But most of all, in these last 6 months, she has been my sounding board. She watches Ella learn and reach for her milestones, she listens to my concerns and while she has her own hard issues to deal with, she doesn't let it show when I make my own emotions take priority over everything else.

If I could be selfish, I wouldn't ever let her leave my house. She would be around for the next 30 years to help me make fun of Mike, hang with Ella, chase the boys and share wine with me by the pool. Brigid is a really good dancer, an OK cook and an amazing best friend. She is Ryan's Godmother and Ella shares her middle name for a good reason - they are both amazing, happy people.

Love you Brig. I know you are moving on soon to start you own life and well, I don't like it, but I guess as long as you remember to wax your eyebrows still, I will allow it. Just come home on Sundays still for chicken and pasta salad and swimming and your brother's Usher moves.

Wow...

2011-05-31T20:50:00.000-07:00

So... It has been, what, 3 + months since my last blog post? Wow... Time really does go by very quickly because I swear just yesterday I was sitting down to tell all my blog reading friends about this:

Umm, get this damn chicken away from me...

and now, we are 3 months past that and I need to tell all my blog reading friends about this:

Yeah, I eat solid food now...

And I don't know how to stuff all of the last three months into one little blog post or how to explain why I have been missing, and I don't know that it matters. What does matter is that I took a break from blogging, missed it terribly, developed an ulcer and well, now, I am back.

So.... These last three months have not been without stress. First.. We had a birthday... not just a normal birthday, but a birthday that included llamas and hay and barns and chickens and a lot of work and planning and without Supernanny and SuperHeather wouldn't of happened (SuperHeather works for me and besides being my mini me is also really good at all things creative). Ella had a great first birthday. She had a custom cake made by Supernanny:

She had a custom decorations made by SuperHeather:

And she had llama's:

Ella is one lucky girl, she had an amazing first birthday and we learned we can't buy Ella a Llama or a semi creepy Tweety bird looking cake without faces like these:

We know that she is surrounded by people who love her and want Ella to be happy (and gave up weekends and everything else to make sure she had the best first birthday every)

Ella and Supernanny Roxie

Ella and SuperHeather

True, my thank you's are ummm - about 4 months late (how bad is it that they are all printed and I just need to address and mail them) but they will make it out by her next birthday, I swear! Oh, and if Reed asks, please tell him that his first birthday was just as amazing. I don't have time for a middle child complex right now.

Right after her birthday came Ella's first true sickness that put her in the hospital for 2 nights. Talk about awful:

We are lucky with Ella in that she doesn't have any heart conditions or other medical issues that so many little kids with Down syndrome have, so this hospital thing was new to us and something I never, ever want to do again. My heart aches for the little ones who spend to much of their lives in hospitals, we had enough after 2 days, I can't imagine how hard it is for families that have this as a normal routine.

After the birthday and the hospital came moving. Oh, wait... After the birthday and hospital came Supernanny telling us that she is pregnant... Which is wonderful, we love Roxie. She is amazing and when I heard she was expecting, I was 1. happy for her 2. terrified we would lose her. Roxie tells me she will work once the baby comes and I hope she does. The attachment Ella has to Roxie and Roxie's commitment to Ella is amazing. Being a working mom means I have to be OK seeing my kids prefer someone else over me at times and I have to know that those big "milestones" will most likely be hit when I am sitting at my desk across town. Roxie makes this all OK. In fact, if Ella hits a milestone when Roxie isn't there, it would seem weird. Roxie is such a part of Ella's life that I can't imagine her not there to see Ella walk or talk or start preschool. I am a little excited to have a baby around again though and know that I don't have to wake up at night to feed it!

Then we moved.

Yeah, we seem to move a lot. Since Mike and I have been together (15 years now) we have owned 3 houses, rented 5 and lived with our parents twice. I seem to have an aversion to settling down, but after this last move, I swear that I will never move again and if I do, I am starting over with all new stuff because it is just to hard to move past the age of 26. My body ached for a month! We had amazing help from the Supergrandma's and without them we would of left half our crap in the old house and just made do with 5 plates and some toilet paper (I hate packing).

We are all settled into the new house and so happy to be back by our friends and to have amazing neighbors! In the old house my kids went 2 years without playing with any neighborhood kids, so to be able to set this up:

and know that there are kids around that will play on it with my monsters is amazing. It's sad that the old neighborhood (while very nice) was so isolated. At the new house, we can't keep the boys inside and it is wonderful for them to socialize with other kids and ride bikes and just do boy things (although Ryan told me tonight that one of the neighbor boys has a cell phone and now he wants one).

Ella has been doing amazing with her therapies and is - if you ask me - progressing wonderfully. She is getting stronger on her legs, starting to stand more on her own and is just an amazing baby. She wrestles with her brothers (and knows just when to stop to pose for the camera):

n the last 3 month, we have had our share of crying, missed milestones and internet searching for advice on how to get your stubborn child to use a sippy cup but for the most part, we have just been busy raising three amazing kids:

I think that somewhat catches you all up. We can now return to regularly scheduled blog posts about all things Ella.

The R- word..

2011-02-16T21:20:00.000-08:00

I need advice my blog reading friends...

I had a facebook "friend" who posted on their wall today about how ridiculous and un-knowledgeable Realtors are in the Phoenix area, his way to mock these Realtors was by stating he was starting a real estate brokerage and naming it RE/RE Ratard Realty so all the Ratarded Realtors would come and join. He would pay 110% commission because they were all so ratarded they wouldn't know it wasn't possible to pay 110% and life would be grand for his ratarded brokerage (the use of the word retard was spelled Ratard by him in some sort of homage to The Hangover)

If you saw this, would it upset you? It upset me... I wanted to let it go, I wanted to just move on with my day and not call him out on his repeated use of the word retard, but then, people were joining in, commenting on how funny his post was and he kept commenting back, each time using the word retard to describe not so smart real estate agents and how they would all join his "retard" brokerage because they were so slow.

I couldn't take it anymore. I was imagining his kids one day thinking it was OK to use that word (I mean, if they hear it at home, why not use it at school) and Ella overhearing them and crying because it hurt her feelings. I was going to write on his "wall" but I didn't want to make a huge deal of it so I messaged him this:

Hey Bxxxx,

The attached picture is of my 1 year old daughter. When she grows up, many people will think it's funny to call her a retard (or what ever pronunciation some movie made up) because she is a little slower than they are. She will deal with kids and adults using that word to describe people just like her and it will break my heart and hers when it happens. When you think it's funny to post about Realtors and their lack of smarts and chalk it up to them being "ratards" guess what... You are no better than the people that will one day make my daughter cry for their ignorance and casual use of a nasty, hateful word. Next time you think it is super funny to make fun of people by calling them retards, think of Ella and her friends and find a new word...

Thanks - Liz Morganroth

What I really wanted to say was this:

Hey jackass, NEVER EVER use that word again. It isn't cool. Got it? Good.

The response I got back:

Liz, In no way shape or form I was making fun of handicapped, autism or mentally disabled people. People who really know me absolutely know I would never intentionally make fun or use words of hate. I help people and lift them up not tear them apart. I will also have you know, I grew up with and protected more than one handicapped person/(person w/autism) in my life. I have donated thousands of dollars to Autism, Susan G, Obesity and more. Just as I did not know about your daughter, you do not know my family, my experiences, the charitable organizations I support and or friends with brothers, sister or children that have Autism. I`m sorry my post offended you and sincerely apologize to you. I would protect my family and my strong beliefs too but look at the intentions of the other person first. I was expressing how unprofessional people can be in this industry. People do not educate themselves, place effort into their career and the make accusations without facts. by the way very cute picture. she looks beautiful.

Oh, then he unfriended me (and my business partner, just for good measure).

So... I wanted to write him back, I wanted to tell him that I don't care who you donate to, how many autistic people you know or how you try to lift people up. Using the word Retard in any form is wrong. JUST WRONG. Don't justify it, don't tell me you support breast cancer research, tell me you were wrong, you had a temporary lack of good judgement and you won't do it again. Tell me that if my kids run into your kids at school, they won't hear the word retard out of their mouth. Tell me anything that shows me that you get why even using the word in jest is just not ok...

Nope, I got that email and an unfriending.. Now, do I assume I was unfriended so he could talk poop about me and my language policing skills or was I unfriended so he can continue to use the R-word freely? I dunno and I don't really care, but what I do wonder is if I did the right thing? Should I have let it go? Should I have messaged him? Did I get through to him that it isn't OK to use the words no matter what?

What would you have done?

PS: Ella had her first birthday today. I had a whole sad post written about finding out she had Down syndrome, expectations being reset, etc, but I erased it. Today was an amazing, happy day. I allowed myself a good cry at the exact moment we found out a year ago she had Down syndrome, but after that cry, I moved on. Ella's birthday was just like any other first birthday. Gifts, food, cake, family. Sadness still likes to overtake my heart at times, but today we celebrated the amazing first year of an amazing little girl. So, no sad posts, no melancholy mood, just me, my glass of wine and apparently a new goal to eradicate the use of the R-word within the real estate community.

I leave you with my birthday girl. My amazing birthday girl.

Already February...

2011-02-08T19:58:00.000-08:00

It is already well into February. I think of February as the last month I have to pull myself together before spring and shorts and bathing suits and such. I tend to always say - February is the month I will make sure I stick to my workout plan, eat well, self tan and be one hot Momma by March - but then, it gets to be February 8th, Superbowl just passed, I ate one to many cupcakes, there was a sale at Costco on wine and well, I start thinking that March is for getting in shape, I mean, who wears bathing suits in Arizona till April, right?

So, as I sit here with my wine and cupcake, I try to think back to all that has happened in the few weeks..

If I remember correctly, I turned 31. Not as bad as turning 30 on bedrest but not as good as turning 24 in Vegas. I made it through a tough year 30 and feel that I can pretty much conquer anything after last year. Having Ella by my side at a great dinner with family made turning 31 much better. She even let me feed her a few bites of frosting and kept her bow on all dinner.

Ignore my red face, darn wine...

I also spent a lot of January chasing around an army crawling baby who feels that it is totally normal to leave her leg like this:

Umm, yeah, see her leg right there by her hand. Not good. I know she is super flexible, but still! I say the words "Ella, fix your legs" more than I say anything else.

And then we go from forgetting to "fix your leg" to looking like a teenager:

The Vans were totally unnecessary, but when I saw them in Coronado, I knew her favorite person in the world, Roxie, would love them and I couldn't say no.

Roxie also loves flowers and bows and let me tell you, I need Roxie around to make sure Ella has outfits like this:

Having 2 boys before Ella Bella means I am not so good at the "girly" stuff, but Roxie (supernanny) is very good at making sure Ella is the best dressed baby in Gilbert. I rush in the door at night just to see what outfit she will have her in. I LOVE it!

I also got to annoy Ella to no ends to try to get a picture to send to her Grandpa in California. I begged her for a smile, but all I got was:

This would be Ella's "leave me alone NOW" face.

The best part of the last 3 weeks that I haven't been blogging....

Ella put weight on her legs and is able to stand (supported by us or the couch or the amazing Tess) for a short period of time. In fact, in the last few weeks, each night Ella and I have a dance session where she stands and we "dance" to the radio and sing together. It pretty much takes the fact that it is well into February and I haven't yet started my working out and tells it to stick it. I can be skinny any month, I only have now to enjoy dancing Ella Bella.

So, that has been my past 3 weeks. I have also worked my butt off, been sick, decided I am so fed up with our local DS "network" that I am going to revolt and start my own, went to an assembly where Reed got an award and managed to not get one good picture and get my hair done finally (you know it's bad when the 4 year old notices the gray).

I am moving on to a new project. Ella's party. I wanted pony's and unicorns and giant sand castles. She is getting pretty darn close to it. We are having a Farm party for Ella. Petting Zoo, crafts, games, if it's on a farm, we have it going on. I have never taken on a party quite so daunting and to think we are less than 2 weeks away and I have a crap ton to still do is pretty darn awesome (but true to my procrastinating self). I pray that the boys don't ask to see pictures of their awesome 1st birthdays. I can assure you there were no baby bunnys or pigs, just mom, dad and some cake and while they were nice, I am not sure you can beat the Alpaca exhibit Ella is having...

Off to see if I can locate a tractor for an authentic tractor ride station...

Thinking back..

2011-01-14T21:54:00.000-08:00

As we draw closer to Ella's first birthday, I am full of emotions. I know we have a full month till her official birthday, but tonight, as I rocked her to sleep, I couldn't help but think of the feelings I have had in the last 11 months.

There is a part of me that is drawn back to thinking about the month leading up to her birth. The stay in the hospital in San Diego, the crazy bed rest rules, the scramble to get her room ready before she came, the tug to want to be at work, amidst the craziness of my team closing deals and the sadness in seeing my boys grow older because they had to be a little more self sufficient because mom was not around to do "mom" things.

Another part of me is right back to her birthday - February 16th. There are things about her birth I will never forget, like the feeling of togetherness of everyone who was a part of it. Mike and I dealing with the contractions, our family racing around to get to us, Erin watching my boys and counting the hours till our nanny got to the house to relieve her so she could be at the hospital. All of the things that led to the actual birth that day were amazing. I literally didn't move a muscle in my entire body for 8 hours because I wanted everyone that meant something to me to be there when I delivered and it worked, when my circle was complete, Ella came.

Then there is the - After Ella was born emotions - As we learned our baby was different, I felt nothing but shock, sadness, anger and pity for myself. As a parent, I wanted my baby to be afforded every opportunity to be the same or even better than the other kids. I didn't want to hear that right out of the gate she was already different. I wanted to take her home, join play groups and go about our merry way. I wasn't prepared for the news and it hit hard. The first few days of her life were a blur of emotion so raw that when I think back, I immediately tear up. I remember trying to be strong, sending an email to our family and friends to let them know Ella was here and she had Down syndrome. I remember not sleeping, I remember Mike going home to shower and when I asked if he cried when he got home he told me he did and I lost it and cried for an hour straight. I remember being so sad and so unsure of myself and my life and what we were given that I would beg for it to be a dream and for me to wake up back in my bed on bed rest, watching Oprah. I remember holding this beautiful baby and not really understanding how it all made sense.

As the news slowly permeated its way through my body, I became at peace with it. I didn't really have a choice. I couldn't leave her at the hospital and she was awfully cute and needed me, so we took her home, cried some more, read way to much and made a promise to Ella and our family that we would be a team.

Our team has expanded to include therapists, friends, random parents I track down who also have kids with Down syndrome, her doctors and sometimes, I won't lie - a glass of white wine.

Today's emotions - Since Ella has been home, I still have my rough moments. There isn't a day that goes by that I don't think about how our lives are forever changed. I will admit that I still get sad. Life isn't peaches and cream always, it's hard. I cry, I wish my beautiful baby didn't have to work so hard to do things that come so easily for other babies. I wish that she could crawl or say mama or hold her own bottle or take a sippy cup. All those things I took for granted with my other babies, I wish my Ella could just do them too. I see how hard she tries and I love her so immensely for being such a strong soul that I can't imagine my life without her, just as she is. I hold her and she smiles and I literally never want to put her down. That baby has taught me more - has taught my family more - in 11 months than I could ever hope to teach someone. When Ella sat up for the first time, well, it wasn't just a yeah - she sits up type of event, it was an all out celebration. These celebrations have taught me a lot about goals, baby steps and believeing in yourself, no matter what the books say.

While I have my rough moments, I have more moments that are filled with peace and happiness and pure love for my new life. Seeing her brothers love her and help her, watching my amazing husband hold her, seeing her therapist work with her, seeing Ella so excited to greet each day, I can't help but be happy.

Her birthday is soon and I want to focus on her and how amazing she is and what she HAS accomplished. I want her birthday to be a day of fun and celebration and well, I won't lie, pony rides. Ms. Ella deserves pony rides...

Nothing better than the flu... Right before Christmas

2010-12-23T19:54:00.000-08:00

If you are coming to the blog to see adorable pictures of Ella doing adorable baby things, just hit the little X in the upper right hand corner. There will be no pictures, there will be no snippets of all the wonderful, Susie-Homemaker Christmas things I have been doing to prepare for the jolly one's arrival. There will be no mentions of homemade wrapping paper, Christmas cards or matching pajamas for my family of 5.

It's not that I am not into Christmas, it is just that since Sunday, I have been running a fever. When I get sick, I tend to just push through it. I don't like to be sick, I don't like to spend time away from my routine. I like getting up, making coffee, vacuuming, feeding the baby, going to work, cuddling with the kids and enjoying my glass of wine once the monsters are tucked in. When I feel sick, I take some Tylenol and just keep going. That works well until you wake up, realize you have been running a fever of 103 - 104 for 2 straight days, you appear to be delusional and no amount of Tylenol is making it better. Then, you decide to go to the doctor.

BUT, I can't ever make these decisions during normal business hours, so I have to go to urgent care. Urgent care must not deal with fevers of the 104.4 variety very often (or I was that scary looking) so they refused to give me Tamiflu and forced me to the ER.

I was thankful for my friend Erin who had the duty of schlepping me to the hospital (Mike was at home dealing with another sick child and the 2 well ones). Finding out if you have the flu is the most unpleasant experience ever. With all the advances in medicine, I find it hard to believe that the only way you can find out if I have the flu is to stick a giant q tip up my nose, down my throat and leave it there for 10 seconds. AWFUL. Best part, once it is confirmed you have it, you have to do the test again for the states records. I did have the flu, I was prescribed Tamiflu and sent on my way.

Since I got home from the hospital, I have done nothing but lay in my bed, convince myself I am dying and be miserable. I have also thought about all the Christmas things we won't do this year and I have been praying that I feel well enough by Christmas morning to at least kiss my own children (on the hand, of course, this flu bug can last for 2 weeks or some nonsense like that) and hand out the gifts that I rushed around for the day before the flu took over my life.

Ryan also has the flu. He got Tamiflu at urgent care. They only force grown women wearing 2 sweatshirts, a hat and appearing to be homeless to the ER. He was at home all snug while I was getting my sinuses swabbed. Only problem with Ryan having the flu? He's allergic to Tamiflu. Something we didn't know until his nanny noticed his eye was swollen shut. Called the dr. and sure enough, it's a sign of an allergic reaction to Tamiflu. Of course it is. The medicine was expensive, why wouldn't we have to stop taking it after 2 doses!

Today is day 5 for me and day 3 for Ryan of being sick. I am ready for my life back.

The other thing that really sucks about being sick. No one wants to be near me. The only person that wants to be near me is my adorable daughter and due to her fragile little immune system, I haven't even been in the same room with her in 5 days. I snuck a peek at her today and I swear she has grown 2 feet and gained 5 lbs in the last 5 days. She'll be pulling up on her own by the time I am done with my influenza quarantine.

So, there you have it. I have been stuck in my room, dreaming all sorts of crazy, fever induced dreams. Mike has been Mr. Mom, Erin took me to the ER, my mom has been sick but managed to make it to the house the one time Ryan decides to puke all over the couch and won the fun job of cleaning that mess up and my mother in law is taking care of my sister in law who is recovering from surgery (was supposed to be my job, but the dr. thought it was best if the flu patient didn't take care of the surgery patient). If Ryan wasn't keeping track of the days till Christmas on some Advent like ring thing he made himself (because Mom forgot to buy him a real Advent calendar this year - Mom of the year I sure am!) I would move Christmas back a week so we could could actually enjoy it!

I am going to get some sleep and in the AM salvage what I can to make Christmas grand still. I had big hopes for this year, being Ella's first Christmas and all... there's always her birthday..

I feel like I have to leave the blog with a picture but dont' have anything real original tonight, so here is yet another Christmas picture. I promise Ella has more than 1 outfit in her closet...

Honey Bear Trainers, maroon spoons, SEE - oh the things we now know (kinda)!

2010-12-16T13:43:00.000-08:00

Last night, I came home from work and Reed said to me - Mom, Ella's nose is snowing. This little sentence explains Reed to a tee. He has no concept of using correct sayings, of time, of anything that isn't inside Reedworld. Reed loves to wrestle, eat broccoli and make messes. Reed loves his sister but can't be bothered with helping change her diaper, but ask him to sing her a song and that boy sings a mean rendition of Rudolph the Red Nosed Reindeer (with dance moves). He is the reason that I am terrified of us using sign language.

The sign language we are learning is called Signing Exact English or SEE. It is different than ASL - If you have heard of "baby signs" that is basically what we are doing, but we are going a little above most baby signs used and adding things that she may need as she gets into school but most babies don't use (like computer, etc). Learning SEE is tough enough. Trying to implement it into our routine when we are talking with Ella is even tougher. Imagine, I am on the phone, Ryan is throwing a football inside the house, Reed wants water, and I am getting ready to change Ella's diaper. The last thing I remember is to sign to her that it is time to change her diaper.

Then there is the Reed factor to using SEE. Reed is trying to learn, but the poor little boy just doesn't have any urge to sit and learn with us. I teach him how to say mommy - he signs back something that may appear to say turkey if you took it literally. We teach him sit, he turns it into two swords fighting and all the sudden I am being poked in the eye. I am sure that if we are out somewhere and Reed starts using SEE, he will most likely offend someone by using the wrong signs. He uses the word snowing when referring to a running nose. He can not be trusted to not mix up the sign for milk and poop..

Other hot topics in my house these days? Honey Bear Trainers and Maroon Spoons. Something that most parents don't know - There is an entire universe dedicated to helping kids eat and drink like their friends. I had no idea. Our new therapist asked me if we had a Honey Bear Trainer. A really big part of me wanted to say yes as to not appear behind but if she asked me to get it, I was at a loss as to where I would find a honey bear in my pantry, so I said no. She then made me feel like quite the idiot for not knowing that honey comes in these little bear shaped bottles. I then had a quick lesson all about a bottle, made for honey, shaped like a bear, that has been modified to help kids learn to drink from a straw. Who knew! I was told we need this modified honey pot by next week. I was on it! The internet gave me directions to make our own Honey Bear Trainer or how to purchase one with 2 easy clicks. I chose the 2 easy clicks option and we are now the proud owners of several bear shaped bottles with straws sticking out of their heads. I gave one to Ella to play with and she immediatly threw it down and played with her socks. The therapist has her work cut out for her next week...

We were also told to get a maroon spoon. Maroon spoons seems to be in hot demand as my search turned up only used ones on Amazon.com. If you remember, I vaccum daily so I am not really the type to buy used spoons to feed my baby with. I am on a backorder list for new maroon spoons. What is a maroon spoon? Well, it appears to be maroon and a spoon. Other than that and being 4 times more expensive than Ella's current spoons, I am not sure the purpose. When it finally gets here I'll test it out and let you know.

When I think back to my life just a year ago, I would never of guessed I would have purchased 4 bear shaped honey pots to serve as sippy cups or spent an hour searching for a maroon spoon or asked my 7 year old how you sign dog in order to tell my 4 year old to stop barking when he wants to sign the word dog. I wouldn't of imagined that when a friend gives me 3 christmas gifts for my kids, I wonder which of my boys she got 2 things for (imagine how silly I felt when I got home and realized I now have 3 kids, thus 3 gifts!).

Here is Ella with Santa. Hopefully Santa told her how he plans to finish the Christmas shopping for her procrastinating parents!

Sometimes, I say the wrong thing..

2010-12-14T20:47:00.000-08:00

Going through a life changing event like having a baby born with special needs changes you. It makes you a little more cautious to tell people "don't worry, I'm sure it's nothing".

I talked with a friend who is having a baby. Their ultrasound showed a soft marker for perhaps a genetic condition. As he was telling me, I couldn't help but think back to my own ultrasound and being told "don't worry, we know you have a marker for Down syndrome, but everything looks totally fine". I remember people telling us not to worry, everything was going to be fine, she was going to be perfect and healthy. I remember searching google for anything I could find on Echogenic Foci and being so reassured that it was so often nothing. I remember the paper the dr. gave me explaining what an EF was and how it talked about Down syndrome and how I ignored it because well, everyone said it was going to be ok.

I am thankful for those people who told me it was all going to be OK. I am thankful for my own blissfull ignorance to what it could be, I am thankful (well, almost) for the Dr. telling us that Ella didn't have Down syndrome. Why? Because for 98% of the pregnant population, it is going to be OK and there is no reason to spend a pregnancy worrying about the off chance that we are the 2% The minute after our level 2 US was complete, I didn't worry about Down syndrome again until 8:30 AM on February 16th.

Today, when talking with my friend, I wasn't one of those "don't worry, it is nothing" people. I was exactly the opposite of what I was thankful for during my own pregnancy. I said what came to my mind. I told him that even if it is something, it doesn't matter, you will still love that baby like every other baby. I said that it is good that he has 2 other kids so he doesn't have the "new" parent jitters. I told him that I wouldn't change my life now for anything. I told him that everyone told me it was "nothing" and well, it was "something".

After I hung up I felt awful. This poor guy. Calls to tell me about work, mentions he has a baby on the way and had a not so "perfect" ultrasound and I can't just say something like "don't worry, it happens all the time, your baby will be fine". I have to break out my own story, my own "don't worry" predictions. I probably sent him worrying for the next 2 hours and well, for most, it is going to be OK, there isn't anything to worry about. Our story isn't the norm, but when I talk to people, I forget that. I am so passionate about how yes, the initial shock was hard, but you will survive, you will grow stronger than you ever thought. I can't help but be the other side of the coin, not for the negativity, but for people to realize that the other side of the coin isn't such a bad thing.

I leave you with my version of the other side of the coin - a little blurry because she never stops moving...

Happy Birthday to my Dad!

2010-12-13T20:48:00.000-08:00

Time these days, it flies. So fast that I think I have 6 weeks till Christmas still and all the sudden we are at less than 2 weeks till the big day. My christmas list is still a mile long, the kids are Santa crazy and while one would think work would slow down this time of year, it hasn't. Life is one crazy mess of kids, laundry, work, cookies, therapists and well, I wouldn't change it, but I would like a day to sleep past 6 AM..

Tomorrow is my Dad's birthday. My dad and I have a really strong relationship. He is my sounding board. He will listen (and he never interupts me, he would listen for hours if I made him) and then, he will tell me what he feels. It isn't always what I want to hear and I don't always take his advice (I'm a little strong willed) but I always take what he says and keep it with me. I like to think my dad thinks I am a good kid and is proud of me and what I have done with my life so far. I am pretty lucky to have a dad like him, even though he lives in San Diego and I am here, I know he is a phone call away whenever I need him. After having Ella, I remember thinking I didn't want to tell my Dad she had Down syndrome. I was so worried he would be sad and I don't like to make my dad sad. He wasn't sad at all. He was on the next plane to Phoenix and pretty darn amazing. He let me cry, he told me all the things he had read. He asked the right questions and held Ella and loved her like any grandpa loves their granddaughter, and since the day he first met my little Ella, she has had him wrapped around her little finger.Happy Birthday Daddy! I love you!

Ella had a goal to reach by Christmas. She had to be sitting, not getting into sitting on her own, but when placed into a sitting position, it was important that she be able to stay. Well, Ms. Ella has been sitting since Thanksgiving! Our next goal is crawling or at least getting on her knees and rocking.

Have I mentioned that encountering other moms with babies Ella's age is quite the experience these days? They will say things like - "is she crawling" or other totally appropriate questions given her age and I am faced with this dilemma of what to say to them. Normally it is not someone I know, so I don't really think it is appropriate to go into Ella's life history right there at Target, nor do I think I want to catch this poor parent off guard, but I also don't want them to think I am an evil parent who never lets her out of her crib, thus her lack of crawling abilities. I have perfected a smile nod thing and I am thankful I have a 4 year old who normally can't go more than 1 minute without hurting himself, getting lost or breaking something to use as my distraction. It isn't that I mind telling people Ella has Down syndrome, but I don't really want to get into it with the waitress at Outback, so for now, we smile and nod.

I would leave you with a picture of Ella, but of course, I don't have any on this computer. Next time! I promise, although I learned to not promise when next time is.. :)

Whoo Hoo - I made it 3 days!!!

2010-11-03T21:37:00.000-07:00

Yeah, I didn't really live up to that challenge, now did I? I instead went the other direction and decided to just not post for 28 days. See, I can do something!

I have spent the last 28 days in a blur. A blur of family visiting, 11 year wedding anniversary celebrating, baby play dates, football, Halloween parties, crazy work, behavior unbecoming to children, new assistants that rock, Brazilian blow outs, boats, babies that army crawl, buddy walks, more Halloween parties, new cars, Thanksgiving drama. See. I am one busy chick.

One busy chick with some awesome hair.

I know, 28 days away from the blog and you would think I would talk about Ella. Well, I will, but more importantly, I have found the worlds most awesome thing ever. The Brazilian blow out. It is amazing for those of us with frizzy, curly hair. It makes your hair smooth, straight, flat, just amazing. These darn celebrities who have known about this treatment for years were hiding it because they didn't want us normal people to have hair better than theirs. Well Jennifer Aniston, I now have nice hair and a husband.. Looks like only one of us is 2/2. Oh, if you google the BBO (as those of us in the "club") call it, ignore those formaldehyde comments, I am sure it is safe, I mean, have you seen my pretty hair? How couldn't it be??

I have pretty hair that lasted through 2 weeks of Halloween nonsense. I like Halloween, I really do, but it seriously stretched out for 2 weeks. Between block parties, parties at the clubhouse, school parties and the actual night of trick or treating, I am so sick of seeing vampire teeth and tootsie rolls I could scream. When did Halloween turn into a month long ordeal that involves costume parades and frosting cookies? When I was a kid we just had Halloween day. That was it. Just one day. We trick or treated, we went home, we ate some candy, washed the makeup off our faces and went to bed. Now my children think Halloween is a 2 week event. I can't wait for Christmas this year!

Before I spent two weeks in costume hell, I got to spend time with some of my favorite people in the world, Mike's aunts and cousins from New York. They all came down for a week of non-stop fun and well, fun we had - non stop.. It was a crazy week that ended in Mike and I staring at a wall and recuperating the day after they left, but we had a blast. They got to meet Ella, I got to take some time off work and hang out. It was all good.

I also spent a good part of the last month really focusing on what we want for Ella. The state has made some changes to the program she is in (her early intervention therapies) and we have been tasked with the tough task of learning we will be footing the bill for all of her therapy from November 1st on. While I am thankful that right now we can afford that, I get frustrated that my tax dollars do nothing to help my own family! I can't change it though so we are at a point of deciding what we want for Ella and what we can afford. Our insurance covers some things, but the only therapist I care about keeping isn't covered by our insurance. I won't give her up though, so I am keeping PT once a week and really researching a clinic type setting for OT and Speech. I have spent way to many hours on the Internet reading research about therapy and what others think of what works / what doesn't and I am leaning towards Ella going to a clinical setting 2 or 3 times a week for more speech and OT than she gets now. I am learning the clinics around here aren't really set up for babies, but I am pushing them to see if I can get a clinic to take a chance on us. In the future Ella will need more from a speech therapist than 1 hour a week, so why not start now?

I also had an anniversary (my amazing husband deserves a whole post related to our anniversary) and I had an assistant quit and another one start in my Crazy October. Old assistant...Well, let's just say he Facebook un-friended me and I wasn't sad about it. New assistant... Well, let's just say she is my clone. A mini me. (really, a mini me, she is much smaller than I am) and she is full of ideas, sarcasm, great jeans, hard work and candy. It's awesome. It's like me but with 3 less kids. Erin's new assistant is a lot like Erin and while not so full of candy as my dear assistant, she is full of baseball trivia, cute shoes and patience so it is all a great balance around the office right now. Cute shoes, cute jeans, ideas, patience. What more could we want! I like it. We are setting out to accomplish some amazing stuff in 2011. Erin and I are blessed with the smarts and guts to have made it this far, now we have the team to help us be amazing and world overtaking.

OK, OK, now on to why you actually read the blog.

Ella is doing amazing. I can't say enough about how wonderful she is, how great she is doing, how she makes everything in my life better, you get the picture. She is starting to wave, starting to army crawl, starting to get mad when her brothers take her toys, starting to sit up better. She is just being Ella and smiling and loving every day she gets to get up and roll around with her toys. I love it. I love her. She did awesome at the Buddy Walk, she did awesome at her baby play date. See, I can't spend 31 days writing about Ella, all I would say is how wonderful she is and well, it would get a little tiring after a while, I get it... :)

What else... My other two children....

Let's just say that for every amazing baby with chubby cheeks, there is a Storm Trooper and Vampire waiting in the wings to bring you back to parenting reality. If I didn't know better, I would think that my dear boys were sent here to test every ounce of patience I have before I turn 31. I know they are saving something for when they are 14 and I am 33 so I am assuming it was just a tough month for Storm Troopers and Vampires. A month full of teacher visits, phone calls, time outs, bite marks and no X Box.

So much else has happened, but well, I must get my pretty little hair to bed. Till next time my friends! Oh, and by next time, I don't mean 28 days, I mean just a few!

Liz

Did you really just write that?

2010-10-04T21:13:00.000-07:00

I know, I didn't blog yesterday. Day 3 and I already couldn't do it... BUT... I have a good reason. It was Sunday. Sunday is football, kids, hanging out, relaxing and cramming all the homework, laundry, house cleaning I didn't get done on Saturday - day.. Let me tell you, I have a lot of procrastinating I have to make up for on Sundays.

Just when I thought I wouldn't have a single thing to say in my blog, I get a comment on my facebook wall about my blog that inspires me to post. I love comments, usually they are uplifting or thought provoking. This one? It was - very uncalled for -.

Without posting the entire rambling wall post, I can tell you it said that my blog was "such a sad story" and that if I researched vitamins and minerals a little more, I could be like a mom on You Tube who "began making a shake type mix every morning with all of the Vitamins/minerals she had researched and fed it to her child" and that "Within 9 months it was truly amazing how the child's entire face looked so different (more normal of course)."

Umm, excuse me, did you just post on Facebook that I could give my child a shake to make her face look more normal? More normal? Does that seem appropriate? No, sure doesn't.

First thought that went through my head - This person must have no children. No human being on earth who has children would ever tell another parent how to make their child's face more normal looking. Most people without children wouldn't say it either, but if your child is your pet cat, I am assuming you have more leeway when talking to other cat moms about how your cat kids look.. You don't have that same leeway with mothers of human children. We don't take kindly to advice on how to make their faces more normal. Down syndrome or no syndrome, us parents tend to think our kids faces are normal and if we don't think they are, the last thing we want is some facebook friend schilling out advice on a miracle shake to fix their odd looking heads.

My second thought after her post - Ella would be so mad if she could read...

Ella's mad face

Third thought - F- you and your normal looking cat children.

Fourth thought - She must be drunk (the post was pretty rambling and she didn't even realize the blog was about me and my family)

Fifth thought - I should really respond to her and let her know that the post wasn't cool. We don't say those things about kids (or adults) because it isn't necessary. If you want to peddle your holistic medicine beliefs, go ahead but leave out the rude assumptions that I would be doing it to change the way my daughter looks.

So, I did respond and guess what, she immediately removed the post. I personally would have preferred the post stayed as I would of loved all of our mutual friends to see what a crazy, insensitive post it was, but in Facebook world we have the option of undoing our doings, so... It is gone. Gone from Facebook is one thing, gone from my mind, that's another.

Let's see if she ever gets through the doors of my office again.....

On another note, today my assistant gave his 2 week notice. I am happy for him, he is going off to pursue his dream career in music and ministry. I am now though back in the one place I don't like to be, interviewing. If you or anyone you know is looking to work for 2 very smart chicks let me know. :)

k - have to go. Tomorrow I want to post a link I found to a really cool Ballet studio in Boston and another link about a young man with Down syndrome holding down a pretty awesome job.

Till tomorrow friends, till tomorrow.

Welcome back ear infections!

2010-10-02T17:45:00.000-07:00

I had a blissful 9 months without you. No runny noses, no eyes full of puss, no hearing issues, no fevers, no sleepless nights. You just couldn't stay away though, could you? You figured since Reed finally got tubes in his ears and Ryan was too old to bother with, you would plant yourself in my little girl's ears and not go away. I don't like you and this time, I will rid ourselves of you much quicker!

Do I sound mean? I hope so! Poor Ella is now under the spell of the ear infection bug that bit Reed and wouldn't go away until we got tubes in his ears. I think we are heading down the same path with her. This time though I will not wait 3 years (not my idea to wait, his doctor didn't think he needed tubes, we switched doctors and he recommended tubes ASAP) I will do it the minute her doctor tells us we need it. I don't want to sacrifice one minute of her hearing because of ear infections. I have seen what waiting has done to Reed's speech and I don't want to put Ella through that. So, tubes may be in our immediate future for her.

For now though we have one sick little girl. Double ear infection and just overall not a happy camper. Normally when a kid is sick, it isn't a huge deal, they lay on the couch, sleep a lot and get better in a few days. The problem with Ella is that she gets so sick that we have a week of miserable Ella. That means she won't cooperate with her therapy (she has mastered the pouty lip and sad face to get out of therapy), she won't eat, she throws up (I would like to give a big shout out to myself for catching an entire stomach full of throw up in one bib, not a drop anywhere else, I am a master thank you very much) she is just so pitiful you want to cry for her!

The other annoying thing about ear infections. They show themselves at midnight on a Friday. Yep. We can't wait till Monday to see her normal dr. so here I am schlepping Ella to the Urgent Care first thing Saturday AM (and missing Reed's football game - it's always a trade off isn't it) to get more antibiotics. Then, I get to go home and wrestle Princess Determined to get her to take the antibiotic. I love the weekends! Did I mention the Urgent Care took 2 hours? Did I mention that Ella decided to take that 2 hour time frame to excercise her vocal cords the entire time? Did I mention that I hate ear infections?

Ms. Ella is now napping, Reed is reliving his football game for me and I swear I smell Fall in the air. I must go enjoy the moment!

For day one..

2010-10-01T16:03:00.000-07:00

I told Ella that today was the start of Down syndrome Awareness Month. She didn't seem to care.

Just kept sleeping away.

Since I am going to be blogging for 31 days, I am going to go all boring on you guys and make this one an update. We have to start somewhere and I figured that since I have been missing for a few weeks, we should get all caught up. Here it goes:
Ella – Well, Ella isn’t laughing. She gets really close to laughing, she smiles, sucks in her stomach like a giant laugh is going to come out and then – nothing - . I know that she will laugh in her own time, but I want her to laugh now! I want to hear her cute little belly laugh and hear her make little squeals to go along with how excited she gets at things. She is also really mobile. She rolls all over the place, reaching for toys, pivoting to change directions, she is only happy if she has free reign of the floor. She has no interest in sitting up though, none at all. I think since she is such a mobile baby (she is already getting in a crawling stance) she sees no reason to practice sitting up. Her PT and I are diligently working at getting her core muscles stronger so sitting will happen one day, but for now, she is happy with getting from point A to B by rolling.
She is also an eating machine. She loves her baby food. 3 times a day and she eats an entire 3.5 ounce package each time. We are feeding her Ella’s Kitchen Organic baby food. It started out as something cute because it had the same name as her and now it is all she will eat. Good that it is organic, bad because organic baby food is expensive. I think we spend more on her food and formula each week than the two boys put together!

We found a new occupational therapist and all is going well so far. She is nice and knowledgeable and Ella seemed to smile at her, so that is good. Her PT and Speech Therapist are also doing great. I love the team Ella has helping her. I do sometimes dream of a day where we don’t have anyone coming into the house and I can just relax and not vacuum and not be out of bed by 5:00 AM, I can dream, right?
Other than our little girl not wanting to give up any laughs, she is doing great. I stay far away from milestone charts. Ella has a wonderful team helping her achieve her milestones and when she does them isn’t important. She will do them.
Reed – Oh Reed… We learned over the last week that Reed isn’t the friendliest kid in his class. This was a little shocking as he is by far the most outgoing of all of us. He likes to make friends and play with others, or so we thought. His teacher was wondering why he was always alone and the kids would leave the table he was at. She decided to kneel behind him during play time and heard him whispering “Go away”, “don’t touch that”, etc. under his breath if a kid walked up to play with him. Awesome. Not only is our kid being mean, but he found a super creepy way to do it! We talked with him and while I hope we got through to him, I am not so sure. His reasons for doing it? He just wants to be friends with Ryan so there is no reason to talk to the kids in his class and he didn’t want to be loud about it so he whispers.

Ryan – I didn’t have much to post about Ryan until I received an email from his teacher this afternoon. To paraphrase her email –“Ryan got in a food fight at lunch. The cafeteria workers were not happy at all.” I can’t wait to hear about this when I get home tonight. This is not like Ryan at all! I am not happy with him, but a little part of me is glad he knows how to break out of his grown up shell sometimes and be a kid (don't tell him I said that though!)

So… That catches you up on the kids. See you all tomorrow!

October is...

2010-09-30T21:25:00.000-07:00

Halloween
Cooler weather
Fall break for the boys
Football
Columbus Day
Down Syndrome Awareness Month

Oh, wait, were you shocked by the fact that I was actually posting and didn't read the list above? (I know, 2 1/2 weeks without a post is a long time in blogging world) Let me repeat the list...

October is:

Down Syndrome Awareness Month

Yes, I think that out of the entire list, the only thing that really matters is that Ella Bella has an entire month dedicated to raising awareness for Down syndrome. That rocks. We need more awareness. Not just for the general public but for us, her family as well. Here in Ella Bella world, we get so caught up in how adorable she is, we tend to forget that we need to focus on our sign language lessons with her, our reading on her development, our commitment to the Down syndrome community. October is her month. October is my month to get my goals on track.

I also decided that I am committing to 31 for 21. 31 days of blogging for Trisomy 21. I am going to do it. I am not alone, there are lots of great parents who are doing it and well, I am sure you all can't wait to see what I have to blog about for 31 days straight. On day 20, you might read about what I made for dinner and who I flipped off while driving, but this 31 for 21 thing is a real mission that has been going on for many years and I want to be part of it, so starting tomorrow, it's on.

I had a really good blog for tonight, but like any good business person, I need to make sure I deliver on my 31 for 21 pledge, so I will see you tomorrow on day 1 with my really good post! :)

Share my blog, let people know that for the next 31 days I will be posting everyday. Tell them that Ella is cute. :)

Liz

Semantics matter to some...

2010-09-13T20:37:00.000-07:00

I almost didn't post this one...

In the past 6 months I have met people and read blogs about others who have children with Down syndrome. Some of them are people I would be friends with even if our kids didn't share an extra chromosome. Some of them I wouldn't be friends with even though our kids share an extra chromosome. What I have discovered is this...

Semantics really matter to some people.

The term "semantics" refers to linguistics and the meaning, form, and interpretation of words, signs, sentences, etc.
People most often use phrases like, "Let's not argue over semantics." This usually means that the general meaning (of a word, phrase, sentence, subject, etc.) has been addressed, and the conversation has stalled on small points that have no bearing on the overall/main subject matter.

I am finding that no matter how I say "Ella has Down syndrome" I am making someone angry. It is always someone who:

1. Doesn't know me or my family
2. Doesn't know Ella

These someones email you in the middle of the night telling you how you are wrong to call it Down syndrome, there are new names for it that don't use the word "Down". These someones post on your facebook wall that you are bad for calling it special needs, it is special abilities. These someones tell you that if you put the Down syndrome before the noun (baby, Ella, cutie pie, etc) you are defining the child and therefore, ruining its life. These someones make you feel like you pretty much suck at dealing with a child with special needs even when you think you are doing A-OK.

These people try to pass their comments off as advice or help from someone who has been there / done that, but really, it comes across as "if you don't agree with my way of thinking, then you are stupid and ruining your child". In their minds, there is no room for my way of thinking or my feelings. I don't like this. I take everything I read, everything I am told, everything I hear, into consideration. I might not agree with your view point, but I don't think you are wrong for thinking it. I just need to find my own path and follow the ways that make sense for my family. Why is that bad? Who are they to judge us, or anyone for that matter?

This is how my mind works.. Good or bad, it is how I feel about my situation..

I don't get why they want to change the name of what Ella was born with. Why can't we call it Down syndrome? When we go to the dr. or meet a therapist, they call it Down syndrome. As Ella grows up, her peers, her teachers, the school bullies, they will all call it Down syndrome. They won't change the name to make her feel better about it, they won't sugar coat it. She needs to be able to respond in an appropriate way. She can call it whatever she wants, but she needs to know what others will call it and why it is called that. Ella will learn, as she gets older, that it is called Down syndrome after the name of a person, not after a defining trait of the syndrome. She will be empowered to teach people, in her own way, about her extra chromosomes. It doesn't matter if we change the name, it still is what it is.

Ella also has special needs. You can disagree all you want, but she has special needs, not special abilities. She is not Superwoman, she can not see through walls or leap buildings in a single bound. Those would be special abilities. In fact, none of my kids have special abilities. I don't either. Some children excel in one thing over another, but in the grand scheme of things, the only people with special abilities are superheros. Why can't Ella have special needs? Is it the word special that throws people off? If so, we should call it different needs, but we should keep the word needs. We all have needs, some of us just don't have needs that far off from the needs of the general public, but some of us need a little more than the general public, and guess what, I am happy that we have systems in place to address that. I am glad that her special needs mean she gets therapy and extra help when she is in school. Letting the world know Ella has special needs means the world can help Ella with her special needs. If someone takes the words "special needs" and turns that into something bad, then I will educate them why it isn't bad, just different. If they choose to not listen, they aren't worth our time anyways and no matter what I called it, they weren't open to hearing it.

I didn't accept Ella having Down syndrome for the first 24 hours of her life. I convinced myself they were all wrong and I would wake up the next day and next to me would be my dr. She would apologize for the wrong diagnosis, ask how I was feeling and go about her rounds. That didn't happen. Hour 25 brought a social worker and signing up for state programs to help Ella. At that moment, I accepted Down syndrome and her special needs. I accepted all of it just as it was, no special names, no sugar coating the road ahead for all of us. I had to accept it to make sure everyone around me accepted it. If I call it something different, aren't I showing Ella and everyone else that I don't accept it as it is? I don't have to like it, there are days I hate it. There are days I want a different life for Ella, but I accept the life we were given. Shoot, there are days I want a different life for me, or my boys, or anyone going through a tough time, but I accept that it is what it is, no matter how we try to dress it up. How we react to what we are given is what matters, not what we call it.

OK. Off my soap box.

Here is a pic of my special baby.. :)

Just another manic monday...

2010-08-30T20:57:00.000-07:00

“Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength.”- unknown

I took this quote from a Facebook friend who had posted it. I feel like this quote is the best way to describe me and the last 6 months of my life. When I had Ella, I think everyone would have found it totally normal for me to go into my room, turn off the lights and not emerge for a month. I bet Mike and my mom would have brought me food at regular intervals and my dad would have sent me books to pass the time. Erin would have done all of my work for me and my sister in law would of brought me Chipolte and vodka whenever I asked for it. No one would have thought it was odd that I was hiding from reality. They would have given me my time and said nice things to me and patted my head and secretly talked to one another about how to fix me. As much as a months reprieve from reality would have been nice (I mean, no work, vodka and books on demand, what more could I want??) I stayed strong so those around me would know the game plan and would follow suit. I need strength from my inner circle, not only because of Ella but because we lead a crazy busy life and I need everyone to know that their leader is strong and they should be too. We don't have time in this family for "poor me". We deal with the hand we are dealt and we wake up each morning knowing the day is what we make of it. Sure, sometimes I feel sad, but I allow those feelings like I allow myself fattening desserts. Only on rare occasions and only if I have the time to truly experience the feeling. Not worth the time or the calories otherwise!

I don't really have anything else "insightful" to post. I am to tired to be insightful. We just wrapped up a crazy two weeks of moving our office to a new location (it rocks), taking a ton of new listings, starting homework routines and yelling at Reed for rolling the baby up in his carpet, so really, I have no mind capacity for insightfullness right now.

Oh, you were reading the last paragraph... Yes, I did say yelling at Reed for rolling the baby up in his carpet. Right. The nanny called me on Friday at work. She was livid. I love when Roxie is livid. The accent just makes me think of Mary Poppins and well, I tend to lose focus on why she is mad and focus more on perfecting my own accent to use in such cases. Anyways, she was angry with Reed. It seems that they were all playing in Reed's room and Roxie stepped out to take a phone call. When she came back Ella was rolled up in Reed's carpet like a burrito. Now, normally, I would be angry with Reed for this, but Roxie caught me right in the middle of our office move, I hadn't slept all week, I was stressed, etc.. So, when I heard her say Reed rolled Ella up in the carpet, I started laughing. I couldn't stop. Dear Roxie thought I was crying and then tried to console me, which made me laugh more. She then put me on speaker phone and asked me to talk to Reed about his actions. It went like this: "Reed, you are NOT ALLOWED to roll your sister up in your carpet". I then stopped because I was crying it was so funny. Everyone in my office was laughing. Roxie wasn't. (Disclaimer: Ella was totally fine and not fazed at all, wasn't even crying). I then asked Reed why he did it. His response: "Ella scratched me and I didn't want her to be able to use her arms to do it again.". I was really proud of Reed for using some form of cause and effect in the situation. Normally Reed doesn't do a lot of thinking other than wondering what type of cereal he is having for breakfast or if his cheetah came in from outside for the night, so to hear him say something that took a little more thought, it made me happy. We did have a talk about not making his sister a baby burrito and that it could of hurt her to do that, but, in the end, Ella was OK, I got to let out a little stress and I gave everyone in the office a reason to laugh...

Did I mention Ella started OT? She did. The therapist was 20 minutes late. Not a good start. Even better, she didn't show the next week. No call, nothing. I get a call from another OT who told me the therapist we had coming to the home shut down her business and isn't allowed to see patients anymore. I don't know the details and I am just thankful Ella didn't bond with her and then this happened. I am pretty pissed though. This woman had to know that she was going to be shutting her business and could have given us a heads up. Ella needs OT and deserves OT and now we have to start over in our search for a therapist. It delays her right to have the therapy and her development and well, if I was to see this lady again, I am pretty sure I would tell her where she could stick her feathers. The other thing that sucks... There is an OT shortage in the valley so I literally can't find a new one. I am on a waiting list for 2 OT's and still making emails and calls daily to find someone. I get that some people are flaky, but when your job involves helping special needs children and they depend on you to help them develop, grow up and do your job. GRRRR.

Despite not having OT, my Ella Bella is doing pretty awesome. She is interested in eating, chewing on her hands, blowing raspberries and yelling into her mirror. She refuses to laugh. REFUSES. I have decided that it has nothing to do with her delays and has everything to do with her taking after me. It takes a lot to make me laugh, so naturally, Ella would be the same way, right? I pretty much only laugh when I get to sing Karaoke or I watch the Golden Girls on TV (yes, I liked Betty White way before she was so hip), so she'll get there... Right???

She also has no interest in sitting up. I work with her every day and she just doesn't have the muscle tone yet. She is trying, trying, trying, but if she also takes after me in the muscle tone department, it could be a while before we see her abs toned enough to hold her up. I mean, I can't wave good bye without my arms continuing the wave for a good 3 minutes after I stop waving. Poor girl, she is destined to never laugh and have floppy arms. At least when the boys do something I can blame it on Mike. Like when Reed throws like a girl or Ryan is scared of a spider, I totally know that is from their dad's side. Makes me feel better.

There are so many other things going on, I could go on all night, but I wake up at 5:00 to work my floppy arms and I am tired. Ella is asleep and so is the rest of my family. Till next time my friends....

Raspberries, Payson and a birthday..

2010-08-18T21:40:00.000-07:00

I have noticed a few new readers to my little blog. Ella says hi to you all!

Ella has a new - pretty awesome - trick. Blowing raspberries. 2 months ago her Dr. asked if she could do this yet and I was so sad that she couldn't. I don't know what I was thinking, I kinda wish she still couldn't. Why? Because it's embarrassing.. Imagine being in line at the grocery store, or shopping at Target and all of the sudden everyone around you hears "pfffff". It doesn't sound a thing like blowing a raspberry. It sounds like she is passing gas. Totally cute if you know the truth, but not cute when the people around you look at you like your the one making the sound. I find myself saying really loud "Oh Ella, you sound so cute when you blow raspberries" a lot these days. I also find myself unable to tell if one of the boys is being gross or if it's Ella when we are driving around and all of them are in the back of the car. Trust me, it isn't always Ella....

This weekend we went to Payson and I learned Ella is a wonderful travelling companion. She doesn't fall down cliffs (Reed), she doesn't bite her own finger and make it bleed when eating french fries (Reed), she doesn't mistake the word Elk for Elf in a conversation and spend the next 30 minutes crying, covering her eyes, convinced there are creepy elves with antlers roaming around the woods (Reed). She also doesn't complain about not catching a fish (Ryan) or only eat pancakes that are fluffy (Ryan). She is the perfect little traveler. She lets me tote her around in her Baby Bjorn, she eats where ever we are at the moment, she sleeps all night without stealing covers and she doesn't even want me to put a worm on a hook for her to fish.

I know.. I am not supposed to play favorites, but hey, I need to remember these sweet, easy baby days and store them in my mind for when she is a toddler running around and getting into everything!

In all honesty though, the trip to Payson was a blast. The boys were on their best behavior and we had a lot of fun. I do sometimes wonder what planet Reed comes from, but we had a good time..

We came home just in time to celebrate my grandma's 89th birthday. It was a nice night for her and the women who take care of her in her care home went way above and beyond decorating and making her day really special. I don't know how many more birthdays we will get to celebrate with her, so it was nice to be able to capture pictures like this:

We all had a great time and it meant a lot to my grandma to have us all there eating cake with her. Happy Birthday Grandma!

I wish I had something exciting or meaningful or insightful to post, but really, life has been out of control busy but also very calm. No crying fits, no sentimental moods, nothing but work, kids, therapy sessions, vacuuming and laundry.

Tomorrow we start occupational therapy. The therapist is the one I like to call "feather lady". I am sure that will lead to a post of some sort. Till then, goodnight my friends!

Daughtry to the rescue again...

2010-08-11T21:03:00.000-07:00

Last night I cried..

Why did I cry? Someone asked my nanny if Ella had Down syndrome. To be fair, the person that asked has a 4 year old with Down syndrome and may have been tipped off by the preschool teacher that one of the kids in the class (Reed) has a baby sister with Down syndrome, but nonetheless, her asking made me cry. I know, I am most likely over-reacting as this woman is probably tuned in to what Down syndrome babies look like because she has been there and done that and she was probably so excited to meet Ella and share her knowledge with us, but for some reason it made me sad that she walked right up to Roxie and asked if Ella had Down syndrome.

I think I have done a good job adapting to our new life. I get that Ella has Down syndrome, I get that she may live with us or live only semi-independently for the rest of her life, I get that she won't be President and she probably won't drive a car. I think what made me cry was thinking that other people might know all this about her already by just looking at her. I don't want people to look at her and because she looks a little different discount her, her feelings, her abilities. I want them to give her the same chance they would give anyone else and well, the truth is, this might not always happen. I don't think that the woman at preschool falls into this category at all and I don't think this is what she was doing, but hearing Roxie tell the story made me think about what we will be dealing with for the rest of our lives. People who automatically assume Ella isn't as "good" as them because she doesn't look like them.

Writing about it now, it seems so silly, I took one comment about Ella's day from Roxie and made it into something so much bigger, but hey, I can't help my feelings and I was already tired last night and so... I cried.. The best part... as I was crying my song (Daughtry's Life After You for those of you new to the blog) came on. Like someone out there was slapping me in the face as I was crying telling me to get over it and get on with cooking dinner.

Enough with that, she has Down syndrome, She is adorable and she rocks at sitting in her high chair and eating solids so....

Let's move on... Yes, I said she rocks at eating solids. Tonight was the first night we tried it. We have been waiting as she is a wee bit behind in the sitting up thing and I didn't want to rush it until her head control was better, so we waited until now and well, she did wonderful!!! We gave her rice cereal and she ate the entire bowl. Let me tell you, this little girl had a blast. She would get so excited when the spoon was close to her mouth that she would shake. I loved feeding her and I loved how into it the whole family was. Ryan was by her side the whole time encouraging her and wiping her face and Mike was taking pictures and Reed was talking about Cheetahs (4 out of 5 of us isn't bad...) and it just felt so awesome. Everything she does is so much more important to me because I know she has to really work at it. I was excited when the boys ate solids for the first time but it was more of a "oh, look how cute Ryan is when he has rice cereal all over him, and me and the floor". With Ella you are excited because you know it is hard for her little muscles and her tongue to all work together but she keeps trying and by the end, I swear she was a pro. I was a proud momma tonight.

We are working really hard on getting her to laugh and sit up and use her arms more. She can laugh, I know she can, but she just chooses to show us her giggles with big smiles instead. The sitting up thing... Well, Ms. Ella needs some more strength in those ab muscles. She is a bit wobbly but we are working on it. I know I talk about her therapists all the time, but honestly, Tess has been the biggest blessing to us. She knows how to work with Ella to really make her "work out" without angering her and she is positive but realistic. 3 months ago I really didn't get why you start therapies so early, but now, I get it.

OK, off to bed. Mike and I realized that we won't ever be skinny again by just sitting on the couch so we are waking up early to work out. I wish I could do the boot camp thing but there isn't time in the morning with Ella's therapies starting so early (we had to move them even earlier in the morning to make sure we could get Mr. Cheetah and Ryan to school on time) so I will be in front of my TV tomorrow at 5:00 AM watching Denise Austin tell me my buns are great but she can make them fabulous. Good night!

A blog about a little bit of everything...

2010-08-03T07:22:00.000-07:00

My life has been so crazy busy lately that I am not always sure what side is up.. Between launching a new company (Welcome to the world RE/MAX Mosaic Properties!), raising 3 kids who have the longest Summer break ever, waking up at the crack of dawn to be ready for Ella's therapies, a new nanny and doing laundry, I don't even have time for a glass of wine or reading People these days!

Ella had her evaluation with the Occupational Therapist. She was a little odd (and showed up 10 minutes late...). She asked me questions (and expected a serious answer) like: Does Ella like it when you rub her face with a feather? Now, I get the point of occupational therapy, it is for sensory integration, helping with tasks of daily living, etc, but Ella is 5 months old. Do you think I have plucked a feather out of a pigeon in the backyard and rubbed her face with it? I haven't. She didn't seem pleased that I didn't know how Ella reacted to feathers. I asked her if she had one we could test out and she didn't. If the feather test is so important, bring your own damn feather. She also wanted to know if Ella has issues with tags or seams. She doesn't, but it got me realizing that the rest of my family might need some occupational therapy. Mike has issues with tags and seams and has passed that down to the rest of the children (Ella takes after me so she is pretty much perfect). You should see Mike, Ryan and Reed putting on shoes and socks. It's like a 10 minute ordeal to line the seams up right so you don't feel them when the shoe is on. I told the therapist Ella was OK with seams, but if she had any tips for a 31 year old I would be happy to hear them. She was not amused.... I guess the good thing is that Ella needed OT so we add another therapist to the vacuuming rotation. Yes, I said it was a good thing she needs OT. I know it sounds odd that it is a good thing to need therapy, but I want Ella to get all the extra help she can so as she gets older she might be able to master skills faster than if she didn't have extra help. I worried about her not getting OT for a month and I am so happy the eval is done and she qualifies! I will let you all know how she reacts to feathers.

Ella has a new trick. She learned how to click her tongue and she has started doing it at the most odd times. Like ALL night. I already don't sleep as I am terrified she will stop breathing (no medical issues, I'm just neurotic) so now on top of waking up to check her breathing, I am woken up to a sound that sounds like my 5 month old is chewing on something. Last night I jumped out of bed because I thought she was chewing. She was sound asleep clicking her tongue. I am a little annoyed by yet another reason not to sleep, but ecstatic that she is doing it. This is a big step in language development and since that can come much slower for Down syndrome babies, the fact that she has the tongue strength to click it is awesome. She is in her bassinet clicking away right now.

I have been fortunate to meet with a few moms of babies with Down syndrome in the past few weeks. Nothing makes my heart happier than seeing these adorable babies and sharing stories with their parents. I am really trying to figure out a way to make a network somehow to reach out to these parents on a more organized level. I don't know how yet, but I feel strongly about my want to be there for them and share and cry and laugh together. Not to knock what is in place, they are a great resource and have great support, but I dunno, I want a different vibe than what I have found so far.

We have had our new nanny for about a month now. This is her second week working on her own. She is awesome beyond words. She organized Ella's room so perfectly that I wanted to cry when she showed me. She just comes in and jumps into whatever the kids need and still finds time to do laundry for the kids, make them clean up, read to them, play 20 games a day. She is British and I secretly wish I had a British accent. Makes you sound so much nicer when you are yelling at the kids (yes, I tried it out). When our last nanny quit (by text, no notice) I was a little crazy with trying to figure out what to do. It seems there was a master plan out there for us as now we have Roxie and it is going great.

What else is keeping me busy.. Oh, Mike's extreme reaction to an antibiotic.. I have no idea how you can make it to age 31 and not know you are allergic to a drug. I am sure it means you are a healthy person and all that, but hey, there is something to be said for knowing you will get some crazy blood vessel damaging disorder if you take 1 pill... He didn't know. He also didn't pay attention to it for the first day. It wasn't until his face swelled up, he started to feel loopy and his body was covered in a red rash looking thing that he thought he should bring it to someones attention. Men.... He stopped the antibiotic and it still didn't go away (the rash, thank god his faced stop swelling). He went to the Dr. yesterday and it wasn't a rash at all. It is Vasculitis which is an inflammation of the blood vessels. Only reversible by steroids. Poor guy. This morning he is starting to look a little better but has 4 more days of steroids to go.

I will be out of town for the boys first day of school. I am not normally a sentimental person, but this is making me pretty sad. I have them all ready to go minus water bottles. For some reason the only type of water bottle I can find are the ones made out of stainless steel. One of them would knock somebody out with their water bottle and it would be very embarrassing for us. Especially considering their Aunt is a teacher at the school and would probably be the one to have to face the principal first on our behalf. So, my quest for plastic water bottles continues. I get the point behind the steel ones, but they didn't come up with that idea with little boys in mind. I am a little nervous at the thought of Mike getting both boys ready, remembering to take their first day of school picture and then getting them to the right classes, but I have to be in Denver so as long as his steroid regimen doesn't turn him into the Incredible Hulk, he is on his own.

I mentioned I have been busy with work. I have. I hate to talk about work to much on this blog but I am SO excited that our big idea has finally come to life. We purchased a RE/MAX franchise and just yesterday had our "soft" launch. We are officially RE/MAX Mosaic Properties. There is a lot to do now to get us ready for agents and all the big plans we have, but I am ready and so thankful for my husband and business partners. We all share the same vision and goals to be the best and well, it makes it easier when we are all on the same page.

Well, off to make waffles for the boys and start day 2 of my only chicken and yogurt diet.

To my oldest...

2010-07-28T22:41:00.000-07:00

Yesterday you turned seven. It doesn't really seem possible. I don't know how you got to be seven and how the years flew by so fast. It seems like just yesterday we brought you home from the hospital and both mommy and daddy took turns staying awake for 4 days straight just so we could make sure you wouldn't spontaneously combust on us. You were our little first born. So long and skinny, no clothes would fit your lanky baby frame.

There is a special place in a mom's heart for their first born and you have no idea how special that place is for me. I won't ever forget any of your firsts. Your first bath (scary for mom, you screamed), your first steps (way to late if you ask the baby books), your first car trip (to see Grandpa Jeff in California), your first day of school (your backpack was bigger than you!). I won't forget how you are growing up to be a wonderful little man who worries about everything and questions everything and cares more about his little sister than anything else in this world.

I love sitting with you on the couch and reading our big book of answers. I love surfing the Internet looking for funny videos of cats and dogs. I love holding your hand because I know you don't think it's cool anymore but you do it anyways because you know I like it. I love talking to you because you are so smart and you ask such good questions. I love how you are so interested in my work and remember all the details. I love how dark your eyes are and how happy you get when we do a family movie night. I don't ever think you will understand how much you mean to me. How I know that you are my little clone and how happy I am to have a little clone.

You might not like to cuddle, but the pictures you draw for me and your voice on the other end of the phone telling me to hurry home because you miss me are your cuddles and I cherish each one.

You made Daddy and I a family. You taught us how to love so much we thought our hearts would explode. You taught me how to be a protective mommy and when to back off and let you learn on your own. You have been a great example for your little brother. You have held my hand when I was sad with Ella and told me that she is the most awesome sister ever. You are wise beyond your years little one. You have no idea.

Your seven years here have been the best seven years of my life. I love you Ryzonimo. I love you forever and ever and then some.

Happy Birthday!

Can I just complain for a minute or two???

2010-07-19T19:31:00.000-07:00

I am in a sour mood. The kind of mood where I want to run outside and yell all the swear words I know at the top of my lungs and then just stand there and see if anyone has the guts to tell me to shut up. Yep, that sour of a mood....

Why am I in a sour mood?

I am worried about my little Reed as he is always sick and randomly runs a fever and I just want to get him to the doctor to get him checked out so my mind will stop wandering to all the "what if's". He is going to the doctor tomorrow but right now I want him to feel better and not be sick.

I am angry about work and the snails pace we are moving at. About 2 months ago now we purchased a national franchise and we have been slowly rolling it out. I don't do slow. I want to throw myself into this 100% and not sleep until the entire state of Arizona knows who we are. Unfortunatly I am not the only one in control of the time frame.... The department of real estate and the phone provider and our new landlord and just about every vendor we deal with seems to not think that a fast roll out is necessary. I literally wake up ready to go and have myself a little hissy fit every morning because I can't get to work until Ella is done with therapy and the nanny gets here. I want to get to work at 5 and work until 8 and well, I can't. This is the worlds biggest internal struggle ever... I love to work, I love to take risk and I love what we are putting in place but then on the flip side I love my kids and my home life and well.... Balance isn't coming easy these days. When you own your own business you are only successful if you make it successful, so when I stay home or leave early i feel like I am cheating the business but if I stay and work I am cheating my family. Without the business my family suffers as I need to be able to pay for food and shelter and those expensive nintendo games so how do I win? I think once the kids are back in school it will relieve some of the stress as I know they aren't sitting at home wishing Mommy could play with them but damn...It's not been fun lately.

I am also very angry about the fact that I am apparantly to old to work out. I did a "boot camp" for 2 days and after that second day the back of my leg hurt. I assumed it would go away.. Nope. It's getting worse. I haven't worked out in almost a month and if I leave my leg bent for longer than 2 seconds, I am in pain. I wake up at night from the pain. I am dissapointed in my old body. I should be able to work out more than twice and not have such an issue. It's like my body wants me to wear my fat jeans forever. I want to go back to boot camp but honestly, given the fact that I threw up at the last one and now I can't walk without looking like a 90 year old, I don't think I can show my face there...

I am mad that I haven't had more time to spend with those parents who are just finding out their babies have Down syndrome. I want to be there for them. I want to one day be the one who is able to tell others that it will all be OK and that you can balance a family, a business and Down syndrome. I just need time to figure out how to get the message out.

What else...

I am mad at people who drive slow.

I am mad at the store for never having Ella's formula

I am mad at it not being football season yet

I am mad that I got sea sick from riding on an intertube behind my boat (again, another testament to my old age)

I am mad that Ryan will be 7 in a week and I am not creative enough to throw him a party straight out of Pottery Barn. My parties are straight out of Party City.

I am mad that my housekeeper came and within 25 minutes of being home, my house is messy again

I am mad that I wake up early to enjoy my coffee and I am out of coffee.

Well, that about covers it for today. Let's see, to balance out my sour mood, it is only right to share something about my little ray of sunshine, white wine. Oh, wait, I meant my kids....

Ella is doing awesome as usual. Just being herself and not really caring about much other than smiling and hanging with her brothers. Reed is sick but somehow manages to still be cute and Ryan is turning into quite the big brother. He is all about Ella and listening to each of her therapist and doing her exercises with her and making sure she is happy. I love them all even when I am in a sour mood.. :)

I thought it was just Ella....

2010-07-15T21:42:00.000-07:00

SOOO.. My super awesome therapist, Tess, told me about a family she is seeing that has a baby who is 4 months old and has Down syndrome. She mentioned that the family would love to talk with us and she gave me their number. I was really excited as I don't know anyone else who has a baby with Down syndrome. I called right away and we seemed to have more than just Down syndrome in common and it was a great talk, until..... she said these words.. "I swear our baby seems like a really high functioning Down syndrome baby". Oh. See, I am a pragmatic person so either her and I have the only two high functioning Down syndrome babies in Gilbert, AZ or I am in denial about how things should be at this stage. Ella seems so normal (ok, I know she doesn't babble or sit up or always hold her head up) but I swear that from what I thought she would be like to what she is really like, she seems as normal as could be. When you get a diagnosis like Down syndrome, the books make you believe that from the minute that child breathes air you will notice they are different. You get signed up for therapies and early intervention plans, you have people from the state at your doorstep evaluating your little baby for life long care benefits. You get sucked into this abyss of "wow" this is serious stuff. BUT, you have this baby and for the life of you, this baby seems so normal, so peaceful and perfect and beautiful. You realize all these people are here to help make her "more mainstream" but when you are alone with just her, you don't see this diagnosis, you see just a baby. It messes with you. Hearing this other mom say those words was a good wake up call but also comforting. It's nice to know that someone else think and feels the same way I do right now. Right or wrong, we both believe our babies are the little miracle Down syndrome babies of Gilbert, AZ!

What else today...

Losing a nanny isn't as bad as it seems when the new nanny rocks. Our nanny of four years up and quit on us by text about a month and a half ago. Yeah, it sucked. I don't really get why she quit other than she wanted a $2 an hour raise and we offered a $1. I know that in the midst of her quitting Ella was in the hospital, Mike's dad was in the hospital, work was busy, etc, so we focused more on getting through the weeks rather than her absence and somewhere along the way we learned to make do without her. Brigid stepped in like a gift from god and watched the kids this summer and we found a great nanny finder person (NannyPoppinz in case you need a nanny finder) and she sent us Roxie and Roxie interviewed with us and she was wonderful from the start. She's British and full of energy and today my children told me they like her a lot because she plays great games with them. She came with glowing reviews and seems like she can make my life easier and I will miss Brigid but since she won't give up being a teacher, I think Roxie will work out just fine!

Good night friends! Remind me to write about work next time. It's drama like you wouldn't believe! :)

All that I'm after

2010-07-12T21:37:00.000-07:00

Is a life full of laughter...

In the days after I had Ella, the chorus to this song ran through my head constantly.

All that I'm after is a life full of laughter
As long as I'm laughing with you
I'm thinkin' that all that still matters is love ever after
After the life we've been through
'Cause I know there's no life after you

I don't really know why this song stuck in my head. I wasn't a huge Daughtry fan and I can't say I had really heard the song a bunch before, but everytime my mind wasn't full of worry about our new life, I heard those lyrics playing loud and clear. The night we brough Ella home I decided to give her a bath and I turned on my little radio in the bathroom and what did I hear? This song. I sat down (after removing her from her baby bathtub) and sobbed. Giant sobs that were so loud Mike came into the room. I couldn't tell him why I was crying other than the fact that the song was on. If you listen to the whole song, it doesn't really have a thing to do with my situation (I mean, Mike has never had his car break down on his way to tell me how awesome I am, not yet at least) but the song kept playing over and over again in my mind.

I remember scribbling down on an envelope the words and a few thoughts after each line - All that I was after was a life full of laughter and suddenly, in the span of an hour and a few pushes, I was given a different life. No laughter, just pain and sadness. The song played in my head like a script that was mocking me. As long as I'm laughing with you - nope, this wouldn't happen, I wouldn't laugh with anyone, what would there be to laugh about. I'm thinkin' that all that still matters is love ever after - In those first few hours, all that mattered is that my life was over. My baby girl was different. Love couldn't - at that point - fix that. Nothing mattered anymore but the shocking news that was my new life. After the life we've been through - This line was the worst. Who did I piss off to get this new life? After the life we've been through shouldn't I get a new baby with rosy cheeks and an outcome just like other new babies? 'Cause I know there's no life after you - I took this line literally. No life after you. Everything would be different. I would never leave the house. People will stare. I will become so consumed with the diagnosis that I won't ever be the same.

Yes, I thought these things. I heard this song everytime I shut my eyes or took a shower. The minute I had time to just be quiet this song played and I teared up. I cried for everything these lyrics meant, this stupid chorus was ruining my life and it played constantly.

At some point I downloaded the song and played it over and over again and cried and cried and hated Chris Daughtry for writing a song about a girl and making it so much about a baby to me.

After the first week at home (and a few glasses of wine and a few good cries) I started to hear the song differently. All that I'm after is a life full of laughter - Of course that's all I am after. That should be all that anyone is after. Laughter. What is better than a big belly laugh from your kids or your husband or your 90 year old grandma. NOTHING! Those few pushes didn't change what I am after! As long as I'm laughing with you - If I am laughing with you it means we are both still above ground and able to communicate. Maybe, in Ella's case it doesn't quite yet mean laughing real laughs, but it means I am with you, smiling, happy, that means we have things to laugh about. Who doesn't find humor in throwing paper clips as your assistant or slapping your husbands butt as we stand in the checkout line at the grocery store! I do!! I'm thinkin' that all that still matters is love ever after - This might be just a line in a Daughtry song, but it is very prophetic - love ever after IS all that matters. Of course it is. I could be the richest person in the world or the prettiest or the president of the united states but really, all that matters is love. Love in any form. Love from my kids, my husband, my love of pedicures or my love of my work. Love is what matters. Loving what I am, what I do, where I am. Loving the fact that I am here and my baby girl is different. To love something means you love it no matter how awful it is (when I get a bad pedicure I still go back for another 3 weeks later) and you love it no matter how wonderful it is. After the life we've been through - So true. Something I couldn't understand right after I learned Ella had Down syndrome, but now, after what we have been through, I understand it. I get that sometimes you have to experience something bad to appreciate something so good. When life is too perfect you get spoiled. You forget to thank your lucky stars and throw the salt over your shoulder when you spill it. After getting bad news (once you emerge out of the fog) you see things differently. The flowers are a little brighter and the salt doesn't spill as much (but when it does, you make sure to toss the whole shaker over your shoulder). 'Cause I know there's no life after you - Do I really need to elaborate? Ella is here, she is perfect and without her, I wouldn't of ever thought this deeply about a Daughtry song. There is no life after her and sometimes, I don't even know how there was life before her...

Thanks American Idol. Your offspring saved me a ton of money in therapy. :) If I was more talented I would have this song playing in the background right now, but I am not, so instead, I leave you with a picture of why I know the chorus of this silly Daughtry song plays everyday in my head. Sing the song (just the chorus!) and look at this picture and you will get it.

And thank you to Erin who is never afraid to call me out when I don't keep my promises.

Don't be late, Darn it!

2010-06-24T17:02:00.000-07:00

Ella says hi and would like you all to be impressed with her excellent skills at holding her head up.

Ella would also like you to know that her mommy woke up at 4:45 this morning to work out. Her daddy did not.

Now that we have Ella's thoughts for the day out of the way, let's move on to my frustration of the day:

I mentioned in my last post that Ella has 3 great therapists. I lied. She has 2 great therapists and 1 therapist who started out great but decided being on time wasn't important. The time we set for our appointments was 8:30. She arrived at 8:40. OK. Trying not to be a bitch, so I let it slide. Next time, 8:45. I bring it up to her. She tells me she lives in Maricopa and with traffic it isn't possible to make it here at 8:30. Hmm. Ella is your first appointment of the day and I am not asking you to be here at 6:00 AM. I decide to be nice. I move the appointment time to 8:45. The next week she arrives at 9:00. OK. Now she pissed me off. I tell her we need to keep the appointment time at 8:45. She agrees and tells me she won't be late. The next week she texts me 30 minutes before our appointment and tells me she has a funeral she forgot about and won't be able to make it. THEN, the next week she shows up at 9:15!!!! I sent her home. I don't have time for that nonsense. I get being a few minutes late every now and then but really, out of the 5 weeks you never show up on time once? Go mess up someone else’s schedule…

Today I set out on my quest to find a new therapist. Easier said than done... My support coordinator at the DDD is on vacation, no pediatric therapy office in the valley has developmental specialists, I called the state program that is supposed to be my support system and they had no clue what I was asking for. I not only wasted my mornings waiting for the therapist to show up, but now I have wasted time out of my day trying to find a new therapist with no luck. Ella will now miss 2 weeks of SI therapy and I feel horrible, but I can’t have someone 30 minutes late constantly. We have other therapies to get to, Ella is supposed to get an hour with each and her tardiness not only cut into that therapy session but her next one as well. Grr.

Today I started my new nanny search. I seriously thought about throwing money, free laundry service, food, beer or whatever it would take to get Brigid to stop teaching and be our nanny full time but I know she likes the free meals teachers get at Chipolte and that is something I can't match, so I assume that come the end of July we will be nannyless again. I will make sure to keep you all updated on how the search is going. I can only assume it will provide lots of great stories for the blog.

Now on to an Ella update:

Ella has been running a fever since she had her shots and it makes me sad to see my baby Ella Bella not feeling well. She is so cute when she is sick though. She tries to be her normal little baby self but it’s like at ½ speed. I also decided it is time to push for some occupational therapy. She keeps her little hands gripped so tight and occupational therapy will help that as well as get her ready for holding a spoon and toys. I feel like I walk a thin line each day with not knowing if something Ella is doing or not doing is totally normal or Down syndrome related. I want her to eventually have OT anyways, so I am going to start now and then I don't have keep staring at her hands to see if she opens them. I know, I am neurotic...

Something else I didn't mention last post is that we are going to start learning baby sign language in July. I am excited for this as they say that it is really a good way to communicate with Down syndrome toddlers as their speech can be so delayed. I kept putting it off but we need to learn it. The Dr. asked me if Ella was blowing raspberries yet or making certain sounds and she isn't so I have to assume that her speech will be delayed and get her understanding the signs sooner rather than later. My biggest fear about learing sign language? That I won't remember it. I swear, my mind is mush these days and I am afraid I will learn it one day and the next I will be clueless. I will be the only one in my family unable to communicate with Ella. It sounds irrational, but I mean it. I had a dream I was trying to sign to her and my hands weren't doing anything and she was crying out of frustration. Tell me that doesn't make a mommy feel bad when she wakes up the next morning!

The boys... I haven't mentioned the boys in a while... They are being obnoxious little tornadoes and really, who ever invented summer vacation should be ashamed of themselves for thinking it was a good idea to have siblings together for 2 months. One of them might end up taking a long trip to Grandpa Jeff’s in California if they don’t learn how to get along real soon. They are cute, but challenging. Reed is into swearing and Ryan crys over any little thing. They make an awesome pair.

4 months...

2010-06-22T21:26:00.000-07:00

I have a 4 month old baby... She is pretty darn cute. I won't lie. I wake up at 5 AM and just stare at her sleeping little baby face and I am so happy she is mine. I feed her and we snuggle and I sometimes make lots of noise to wake her daddy up just so he knows we are up and ready for him to snuggle with us. For the most part though, I sit and I stare and I wonder how the heck did I get here...

Well, without being too graphic, as I am sure we all know how I got "here" (and if you don't, I would suggest staying far away from wine and the opposite sex until you figure it out), the bigger question is how have we gotten from day one in the hospital to today, day 126 of Ella Bella's life without going crazy.

We got here by lots of love, patience, family, friends and good support. The minute we opened up to others about her having Down syndrome was the minute we could start living our lives again. When I talk about Ella to someone who doesn't know she has Down syndrome, I feel like I am cheating them out of a huge part of her life story so far. Her birth story isn't complete without it. Her first doctor visit or her first stomach bug are all interlaced with her extra chromosome. Ella is a normal, super happy baby, but she is also a baby with Down syndrome and as I have learned in the past 126 days it is not something that I need to keep from people. When they ask me how my delivery was, I respond with the truth... Great until minute 22 of her life. I tell them as much of the story as time allows. I don't cry, I don't say it with sadness or a hushed tone. I say it with pride. My Ella is who she is because of what she is made up of. Down syndrome is part of that, her adorable grin and chubby cheeks are part of that. Her little cry when she is hungry and her snores when she is sound asleep are part of her too. We take every part of her that makes her "her" and embrace it. I don't walk around shouting from the roof tops that Ella has Down syndrome, but I don't hide it either. And really, when you look at her, all you see is adorableness...

She had her 4 month doctor visit today.... She now weighs a whopping 10 lbs. :) well, 9 lbs 15 ounces to be exact... She is doing so great. Growing in line with her "curve" and meeting most baby milestones. She is a champ at rolling over and holding her head up when she is on her belly. She is also a champ at smiling, tracking objects as they move and eating. If we were grading her though, I would have to say that Ella could use a little work on holding her head up when supported in a sitting position, cooing and laughing. Now, to be fair, she is on the verge of laughing (according to her Aunt Brigid who knows all about laughing) and she does coo but not very often. The best thing??? I have 3 wonderful people who come into my home once a week who do nothing but make sure Ella is getting a lot of practice in the cooing, laughing and head holding departments.

Yes, 3 people, 3 times a week... Do you know how many extra vacuuming sessions that equals out to be? (You all know about my vacuuming obsession, right?) A lot. Like 6 more times I have to vacuum (3 before and 3 after) but really, it is so worth it. Ella has a team that swoops in and focus on her and her little muscles for an hour at a time. These people are amazing and great with kids and don't get discouraged when the tiny little baby in front of them falls asleep or screams bloody murder. They just plug along, smiling and working towards our end goal of keeping Ella in line with her peers. I am so happy to have them here. Yes, there are times that I wonder if what they are doing is really helping, but I have to remember to take a step back, stop looking at today and look at tomorrow and then I realize it is all worth it. The fighting with insurance, the sleepless nights about her interviews with the state health agencies. They are all worth it. Ella is thriving under our team approach to her development. Doctor's appointments like today make it all worth it. When the Dr. asks if she can roll over and when Ella not only shows her but does it 4 times, I get it. I smile and I get it. Ella is only 126 days old but in those 126 days, she has beat a lot of expectations. I like that.

An entire month has gone by? Really?

2010-06-22T20:26:00.000-07:00

When I started this blog, I made myself a promise that I would never go more than 5 days between updates. I did good in the beginning, then, as life has a way of doing, I got busy and the days don't just fly by, they zoom by in supersonic time. The type of zooming where I wake up and think it's only been a few days since I posted but really it's been a week and then all the sudden, it's been a month and I want to post, but the daunting task of catching up on the month gives me writers block and well, instead of posting I drink a glass of wine and go to bed....

That's not fair to Ella though. This blog is about her and will hopefully serve as a way for us to document her milestones and remind us that even though we might get frustrated or sad, overall we have so much to be thankful for and so much to look forward too. I also hope that one day, this blog might help others who are taking their first steps into the new world of "special needs babies". So, for those reasons, let's just quickly recap the last month and then get to the important stuff - Ms. Ella... :)

In the last month I have:

Gone to Vegas
Gotten a nasty stomach bug
Nursed my 3 children and 1 husband back to health from nasty stomach bug
Spent a night in the hospital with my baby girl hoping she could survive the stomach bug
Made the biggest business decision ever
Spent a week in Denver learning how to implement said decision
Realized a nanny that quits by text because she only got an 8% raise and not a 16% raise is a nanny I can live without
Been sad that Mike's dad has been in the hospital (twice)
Been even more sad that my Grandma has transitioned from being able to be at home to being at hospice and now is spending her last days at a group home
Nursed 1 husband back to health from the stomach bug (yes, again)
Dealt with my business partner leaving me twice for a week at a time (yes, I miss her)
Learned how to fire a therapist
Learned how to love a therapist
Wished Fathers Day could have been better by my own dad not being so far away
Caught up with a long lost friend who I have neglected for way to long
Celebrated 2 birthdays

See, I have been busy. No excuse though, I know. Ms. Ella is much more important, so for that reason, here is my goal:

I will post to this blog AT LEAST 2 times a week.

If I do that, will you promise to still read it? If we pretend that the last month never happened and with the next post we all act like you knew how the last month has gone will it be OK? Because if so, hang on, I don't ever set a goal I can't reach... :)

Mother's Day

2010-05-15T22:02:00.000-07:00

It seems I am a little behind with posting about holidays. I really do try and get these things out in a timely manner, but I am often faced with the option of posting or holding Ella and having her smile at me. I usually choose the later option... Sorry... but here is my Mother's Day post.

7 years (or so) ago, I only wanted 1 child. I wanted to have this 1 child by the time I was 24 and I wanted to travel a lot, work a lot and love my one child more than life itself. I didn't believe my heart had room to love more than 1 child and I didn't really care to find out.

I had this one child when I was 23. We managed to travel a lot, work a lot and love this one child rotten. Because it was my first, everything seemed much more dramatic and awful then it really was. He has a fever! Oh no, call the Dr. ASAP and put the hospital on alert. He didn't poop today, he must be dying. Seriously, my neurotic mothering was out of control, but it was a happy little life, just the 3 of us. I think I was a good mom to my first. He ate 3 meals a day, was spoiled with love and toys and never left my side.

Then, one day, we decided that having one wasn't enough. We would have 2 kids. I mean, everyone has 2 kids. I was OK with this idea, but I am not going to lie, I was afraid my little mommy heart couldn't love my second kid as much as I loved my first. I was worried about treating them differently, about favoring one over the other. I was worried that I was now being trusted with two little lives to mold. It was like double the chance for mistakes. Then, little boy #2 arrived. Wow. He was nothing like my first. He screamed (a lot), he never slept. He made it impossible for us to leave the house. The weird thing was that once he was here, my mommy heart swelled with love and I had more than enough love for both my boys. I didn't have to work at it. I didn't have to pretend. It just happened. It was awesome. I was an even better mom to both my boys. Somehow the chaos of having two little boys made me stronger and a better mother. It made me realize when to love and when to be tough. It made me realize that I need to be fair to both kids, but I don't have to treat them exactly the same. I really liked being the mom to 2 boys. I felt pretty accomplished in my mothering skills. We were on the fast track to our perfect little life.

THEN.... one day in June 2009, somewhere between swim lessons and packing for vacation, I found out I was pregnant with #3. Really.... 3 kids. I won't lie. I wasn't estactic about this news. I spent the next 9 months coming to grips with the new reality of my life. Even up to the day I gave birth I wasn't really sure I was ready to be the mom of 3.

Well, if I wasn't ready to be the mom of 3 on the day I gave birth, I surely wasn't ready to be the mom of 3 with my newest bundle of joy having Down syndrome. I had to get used to not only having 3 kids (remember, just 7 years ago, I was happy with 1) but now I had to get used to a new world of parenting as well.

Fast forward 3 months into this mom of 3 adventure and guess what. Being the mom of 3 rocks. SUPER ROCKS. It is quite possibly the most natural feeling for me. Craziness, I know, but it just feels right. When the 5 of us are all together having dinner or hanging out, I couldn't ask for a better feeling. My heart not only loved 1 kid, then 2 kids but it pours out love for all 3 kids. My heart is happy. At night, when I go to sleep and my cuddly babies are all tucked into bed, I love it. I love the chaos the morning brings and I love driving my 3 kids around in my "mom" car and I love telling people I have 3 kids. That day in June was the best thing to ever happen to my family and made this last Mother's Day the best one yet. I have 3 awesome, totatlly unique kids that love me, that rely on me, that look up to me and it is the best feeling ever. I won't ever let them down and that is what makes me a good mommy to them (or so I like to think..).

Now, I do have a mother myself and a post about Mother's Day wouldn't be right without mentioning my mom. See, my mom and I didn't always get along. Growing up I would have to say I was that teenage girl you read about in Redbook and Good Housekeeping who doesn't like her mom, says mean things to her, shuts her out, etc. Yeah, I admit it, I was a pain in the ass to my mom. I always needed her for something, but I all around treated her poorly. Bless her heart though, she never gave up. She never walked away from me or just stopped caring. She either has a tough little heart or the ability to realize being a mother isn't always easy. At some point though, I grew up. I realized I was being a selfish little pain and I became friends with my mom and I stopped being mean and I started respecting her. I realized all she had been through in life and how hard of a worker she is and how determined and successful she has been. I realized how loyal she is and how much she loves me. I realized that no matter what happend, she would be there for me. I started to trust her opinions and rely on her advice. My mom has been a very big part of my life for about 12 years now. She has been there through everything that has mattered and she has helped me become who I am today. She taught me that you can raise a child and have a career and still find time to be Girl Scout Troop leader. She taught me that cooking is overrated but reading a book together is priceless. She is the reason my kids have clothes to wear and I never run out of toilet paper. She never sleeps and has energy for anything. She will do a shot of tequila and hang with us until 2 AM and then wake up at 7 and be ready to start the day :). She will sit next to me and let me cry when I just need to let it all out. She is amazing. She is a mom. My mom. Thanks mom, thank you for being you and allowing me to be me and for always being there and for giving up so much of your life for me. I strive to be successul to show you how much I learned from you.

5 reasons I live in paradise

2010-05-15T20:56:00.000-07:00

I think, even with all life has thrown at me lately, I would still say thay I happily live in paradise. Now, my location isn't exactly paradise, I don't have an ocean looking back at me when I wake up in the morning but overall my life is pretty paradisial (my new made up word). What makes it so?

Well...

1. Ella. I am pretty sure she is magical. Like she has little magic baby powers and she cast them on me about 2 hours after she was born and now I am caught up in her magic baby spell. That little girl is so amazing, so appreciative, so adorable. We are at this point where we are seeing her slip behind in some "milestones" and yes, it is hard, but she makes up for it in so many ways. It's like she doesn't want to be behind. She tries so hard to hold her head up or roll over. She never complains. She smiles at you like you are the best thing in the ENTIRE world. She is magic. I could write an entire book about her magicness and she is only 14 weeks old. If having a baby with special needs means you get to experience this magicness, I think you all should have one. Seriously.

2. My other two monsters... Yes, even Ryan and Reed make my life paradise. Watching them play football, watching Ryan become such a big boy (he's reading chapter books now!), watching Reed sing to his sister for 10 minutes just because. These two boys are the lights of my life. They push my buttons and bring me flowers from the yard. Reed tells me I am gorgeous. If that isn't paradise, I don't know what is.

3. Work. Yep, work. I love to work. Crazy, I know, but I love to work. I love to be the best at what I do. I love the fact that I created a business that has been succesful. I love the fact that I wear comfy pants to work and sit across from Erin. I like that when I want to see my husband he is just down the hall. I love that someone at my work stocks the refrigerator with Diet Coke so it is always there for me without me having to ask. I love everything that has to do with work, even the crappy no fun things like paying bills and taking out the trash.

4. My family. Sure, I might act like I don't always appreciate them (gotta keep up my tough girl image after all) but really, I couldn't do 1/2 of what I do without them. My paradise wouldn't even exist if it wasn't for all of their help and support and putting up with me.

5. and of course, my husband. He puts up with a lot of shit from me. He stands behind every decision I make, good or bad, and helps me get through the messes I might create when I am just sure that I am right and go full steam ahead without putting my thinking cap on first. He gave me my 2 monsters and my magical princess and he is the number one reason I live in paradise, no matter what I say to him when I am mad.

Yes, sometimes it rains in paradise, sometimes there are even thunder and lightening storms, but the clouds pass and I am still right where I was before the rain, in my little paradise.

This last week

2010-05-04T22:21:00.000-07:00

We had the meeting, the very big, most important meeting. It was... Odd.

Let me first say that the one thing that you should not bring to the very big, most important meeting is food poisoning. It really makes it hard to concentrate and might even make the strange people in your home think you always sweat and take deep breaths at odd times.

Yeah, I have been waiting for this meeting for about 9 weeks. It has been drilled into our head by doctors, friends, support groups, etc, that this meeting is very important. It sets the tone for what our precious little baby will receive in terms of support for the first 3 years of life. You want to be on your A-game for this meeting. You want to bring it. Me, I brought food poisoning. It sucked.

Anyways, other than trying to act like I wasn't going to vomit in mere seconds, the meeting went OK. We had an odd group of characters on our couch all hovered around a sleeping baby and throwing questions at Mike and I left and right. The weirdest part? No one introduced themselves when they came in. It was like a party and everyone was invited, but not by us, the hosts. We had to guess why they were here. Once we got that all figured out, we realized we had a state case worker, a feeding therapist and a early intervention specialist all gathered around Ella. The case worker was representing the DDD (which, by the way, stands for Department of Developmental Disabilities....) and she asked us questions like "what do you want to accomplish for Ella"? They were very broad questions. I tried to bring it back to what we wanted to accomplish for her right now and think that by the end of the meeting we got the point across. What we want to accomplish is for Ella to be as much like her baby friends as possible. If that means she needs 7 therapists and a rhinestone tutu, then that is what I want them to deliver to me. She ended up stating that her plan would, for now, include a speech / feeding therapist, a physical therapist and a developmental specialist. We have an option to add occupational therapy at a later date. I also told them I wanted all these therapies once a week. I think the way this works is it now has to be approved by some higher authority, so we are waiting on approval from the DDD to get it all started. I am hoping that happens soon.

The next lady on our couch was with Rise Services and was there as a replacement for the woman we met with when Ella was 4 weeks old. I am still unclear as to what Rise does other than set up the meeting between us and the DDD. I have gone to them to ask questions about the services, etc and haven't really received a straight answer ever, so the purpose of Rise is a little unclear to me. The woman had a box of toys more appropriate for a 2 year old than a 11 week old and asked me questions that were pretty straight forward given the baby in question was about 2 feet from her. "Does Ella open her eyes?" umm, yeah. "Does Ella bring her hands to her mouth?" Yep. I don't really know what she did with this info other than tell me Ella scored on the 0-2 month range and that you can't score below that and for her age you can't score above it either so Ella scored as expected. She then seem to watch my every move as I was changing Ella's diaper. I don't know if she noticed I was turning green or if she is a spy sent into homes to make sure we are proper parents, but she was there and part of the pow wow and seemed nice enough, so we let her stay.

The final lady was the biggest mystery and honestly, I don't know who invited her. She was the feeding therapist. She brought a giant bag of nipples and a miniature stethoscope and proceeded to mess with Ella during her feeding to the point I thought Ella might actually pull this woman’s stethoscope right off her neck. Now, yes, she was annoying with her 12 bottle types and all, but she was probably the most helpful person at the meeting. She watched us feed Ella, listened to her suck and swallow and gave us pointers for feedings. I am more interested in a speech therapist than a feeding therapist, but I am told that they come as one package this early in our plan, so I will take her and her mini stethoscope and try to get her to focus on speech with us more.

In all, the meeting was surreal. I was sitting on my couch, the couch I purchased 3 weeks before getting pregnant, the couch I laid on for weeks on end when my body didn't want to be pregnant anymore, the couch I held Ella on and cried and cried in those first few days after she was born and now the couch where I listened to a group of people I had never met before talk about my daughter and her disability. Funny how it all works. I got that couch because it was comfy and big and wouldn't show wear. It has already done its job a million times over in just 11 short months....

So. That was the meeting. I was sick, Ella was charming, Mike was trying to take it all in and then as soon as they all arrived they left and Mike and I were left standing at the door staring at each other and wondering if it all really happened or if it was a dream. I then left Mike at the door and threw up. Note to self, never eat at El Zocalo's again, no matter how good the salsa is.

Since the meeting I have had the opportunity to talk with an amazing mom of a 2 year old with Down syndrome who is willing to share her therapists with us. I am working on getting them added to our plan with the DDD and hoping they can all start within the next few weeks. I am also trying to figure out about the costs of the sessions. The state budget crisis has left a big part of the cost of the therapies to be absorbed by the families and while Ella will one day qualify for government insurances that cover the costs, right now we are in waiting for them to just look at the application. I have been told that almost all Down syndrome babies are rejected the first few years of life. I believe they don‘t have to cover it until they are 3, so it will be a long fight, but hey, I am ready. We do have private insurance so I have to see what they will cover as well. I am sure it isn‘t much as we are self employed and our insurance isn‘t the best. Yet another maze to get through. I have a feeling that in the next few months I will become an expert at insurance and government programs. Yeah!!

That sums up our Tuesday of last week... Let's see, we also had a parent - teacher conference for Reed where I was told he has a pretend cheetah as a friend ( I suspected this, but didn't really dig into it as I was hoping his imaginary friend wouldn't be a jungle animal) I was also told he has a hard time focusing and would rather talk and be silly than learn. Yep, that sums up Reed. I hope by kindergarten he imagines a cage for the cheetah or we will have all kinds of problems. He is the type of kid that would literally get up and run around the room screaming his cheetah is chasing him and then just sit down a few minutes later like it never happened. His poor teachers….

Oh, we also got a boat, drove it home from Yuma, launched it, docked it in 40 MPH wind gusts and managed not to get divorced in the process. It was a very successful week...

My kids are pretty much ready for school to be over. They just want to play and hang out and to be honest, I am ready for a couple of months of not waking up at 5 AM and not trying to seem like I am a responsible parent who utilizes all 5 food groups when packing lunches.

This week... Well, it is just Tuesday and today I managed to get someone fired from their job (not intentionally), we were served with a small claims lawsuit at work (darn tenants) and my cheetah loving son managed to overflow the sink at the nail place with soap bubbles in about 15 seconds (yes, I did leave a bigger tip than normal to hopefully make up for the mess he created). If tomorrow is anything like today, I can't wait to wake up!
Have a good night my friends!

Ms. Ella is growing!

2010-04-26T22:00:00.000-07:00

Ms. Ella had her 2 month check up last week and our little girl gained 2lbs!!! YEAH for Ella!!! She is almost 8 lbs now. When I saw 7.13 register on the scale, I was so happy I wanted to hug the nurse. It's funny how such a small thing could make me so happy, but it did. It was so awesome. I was on cloud 9 for the rest of the day. My little baby is growing just like she should. No label of Down syndrome is slowing her down! I was so proud of Ella and proud of Mike and I for not killing each other over the past 9 weeks while we have existed on no sleep and a crazy feeding schedule.

I have been doing good these past few weeks. Not blogging as much because I am swaped with work, kids, cleaning, life in general. I always think about posting, but when I sit down to type, I just don't have the words there like I used too. In the beginning, I would sit down and my feelings would flow from my heart to my fingertips faster than I could type. I would just type and type and when I was done, it would all sound so perfect and so honest and I would hit submit and it was done. Now though, I am at this place with Ella and our feelings that is more complicated than the raw emotion I felt in the beginning. I am accepting and so in love with my new life but there are times where I will be doing just fine and then, out of nowhere, I will be at the grocery store and see a mom with her daughter and I will just tear up. I get angry for what this God we all believe in has taken from my daughter. I get mad that her daddy will never walk her down the aisle, I get mad that she will never be cheer captain. I get sad for the times that I know kids will stare at Ella and make fun of her. I feel these things, but I feel like feeling them is silly and useless. These aren't the things that matter in life. What matters is that you are loved and happy and safe. Getting married is important, but parents don't love their unmarried kids less. Being cheer captain is great, but I wasn't cheer captain and my mom and dad didn't seem to care. Kids made fun of me and I am a very capable, smart adult who wasn't adversly affected by it. See, I get mad and sad for Ella but then I get mad at myself for worrying about these silly, trivial things that don't really matter. I might dwell on what she won't have, but I need to dwell on what we will have. Love, hugs, smiles, popsicles on the patio with her brothers, shopping days with her grandmas, sleepovers with her aunt. She will be just fine, cheer captain or not but I can't stop myself from feeling this way from time to time.

Tomorrow is our appointment with the DDD. We will spend time preparing the plan for Ella's first 3 years of life and what therapies and special services she will need and when she will get them. It will be our first time dealing with a state agency with something as important as our daughters future. Wish us luck.... I won't settle for anything but exactly what Ella needs, so maybe you should wish the DDD luck instead! :)

Happy Birthday Sir Reed....

2010-04-20T20:05:00.000-07:00

I had started a post about Reed's birthday but ran out of time to post it on his actual birthday, please excuse the tardiness of the post, yes, his birthday was Sunday, but better late than never...

To my baby boy:

As I tucked you into bed tonight and answered the millionth question of the day about cheetahs and sharks, I started to tear up. I am so sad that tomorrow you will be four. I know you don’t understand why someone would be sad about a birthday, but one day, when you are a daddy maybe you will understand.

For 3 - almost - 4 years, you have been the baby of the family and you have embraced this role with your whole heart and soul. You are my love bug that never misses a chance to snuggle with me under the covers or kiss my cheek just because. You are my strong little boy that has had 2 surgeries in your short time here and never complained about the pain. You are the little boy that questions everything and never remembers anything. You are the little brother that drives his big brother crazy but is missed terribly when you two are apart for more than an hour. You are the reason I have gray hair and the reason I know how to get marker off of anything. Your laugh is so infectious that I sometimes say silly things just to hear it. Your eyelashes are the reason you get away with everything. Your smile is the reason I rush in the door at night. Hearing you say I love you is something that will never ever get old. Holding your hand is so special to me that I hope it's still cool to hold your mamma's hand when you are 12.

As you get older, you don't need me as much and it breaks my heart. You used to get up once a night just so I could kiss you goodnight again and while I might have acted mad, I loved that you missed me that much. You used to ask me to pour you a drink or open your snack and now you do it all on your own. You used to need my help getting dressed and now, you can even match your shirt and shorts! I am so proud of how much you can do on your own, but so sad to know that soon, you won't call me mama anymore, it will be just mom and you won't hide behind me when I drop you off at school and give me 15 kisses right there in front of everyone. I am sad that my baby boy, the little 5lb preemie is growing up. I am sad but also happy. Happy that I get to do silly dances with you to country music, happy that I have a friend to color with, happy that I have a partner in crime when I want to play a trick on daddy. Happy you are becoming you but sad that each day you grow older and more independent. If I could bottle your smile, your laugh, your laid back attitude, I would. You have taught me to laugh more, smile more, look at bugs more. You have taught me that, yes, kids do get in trouble at school. You have shown me love and the worst tantrums ever. You have tested my patience like nothing else, but in the end, you have shown me that your round belly and silly smile is all I need to be happy. I just need my Reedy.

Love you baby bubbies. Love you forever and infinity and happy birthday.

So tired...

2010-04-14T21:56:00.000-07:00

The lack of sleep is starting to really affect me. If you call me after 7 at night, you might think I am drunk, but have no fear, I am just in some weird sleep deprivation state and it causes me to slur my words. It also causes me to forget when I schedule dr. appointments, not buy 1/2 the stuff I need at the grocery store, call my children by random names and spell simple words very wrong. It sucks. Ms. Ella must know that I was about to pass out standing up if I didn't get more sleep and she slept great last night, so I am a little more rested today, but still, I feel like I live my life in a fog now. A fog of sleepiness.
You might wonder why I don't make Mike get up for the middle of the night feedings, Ella is formula fed so it isn't like she needs me to be the one feeding her. It's actually really simple why I get up, I love it. I love the moments we have at night when all is quiet and it's just me and her and a silly TV show. She is warm and snuggly and eats slow and takes time to smile and hold my pinky in her little hand. It is a magical time that I look forward to every day. It is the only time in my day where nothing matters but me and my baby. No Blackberry buzzing, no stress of owning a business, no 6 and 3 year old tattling on each other, just a little baby who needs me for everything and doesn't even realize how wonderful that makes me feel. We watch shows like 16 and Pregnant and I tell her that boys are bad news and I cry each time the babies are born because it reminds me of how wonderful having (not carrying, having) a baby is. We watch Project Runway and her and I critique the outfits. We watch the stupidest shows I can find and I give her my running commentary on what's happening and she eats her bottle and burps and lets out gas like a trucker but I know this is her way of telling me she likes our special time too. I won't lie, every 5th night or so I roll over and ask Mike to take the feeding because I need to get some solid sleep or I might turn into the wicked witch of the west but I miss her those nights.

My lack of sleep has become a problem for my memory. Nothing I learn, see or hear is forgotten. It's stored up in my little brain for life. Sucks if you're Mike and want me to forget that time you didn't get me a card on my birthday and I was pregnant and turning 30 and on bed rest and miserable, but most of the time my ability to recall such things as my dad's work number 10 years ago is a good thing. UNTIL I woke up one day and couldn't remember anything. That state department that will be handling Ella's therapy and care plan? No idea what the DDD's stand for. Her next Dr. appt? Thought it was last Tuesday. It wasn't. Remembering to buy lunch stuff for the kids. Whoops, looks like hot lunch for you Ryan. It's like I am living the life of a pothead without the pot and munchies (oh, wait, I have the munchies, but it has nothing to do with smoking illegal substances and everything to do with my addiction to frosted flakes and Milano cookies). I hate not being able to remember anything! I am worried my skills in Trivial Pursuit will be affected and I might not pick the kids up from school one day. I start to worry that maybe this has nothing to do with my lack of sleep and has everything to do with turning 30 and getting older. I don't want to give up my magic nights with Ms. Ella so I guess I won't know if it is lack of sleep or my advanced age for a while longer.

I had mentioned in my last post that Ella's 2 month dr. appt. was this week. It isn't, it's next week. I am so nervous for the appointment. She should of gained a fair amount of weight, but her amount per feeding hasn't really increased so I am worried that she hasn't gained enough. I am also driving myself crazy by finding developmental milestone charts and watching Ella's every move to see if she is getting to the milestones. I was so excited to come across a milestone chart for infants with Down syndrome, but honestly, it was pointless. For each milestone it gives a range of almost a year for the time to reach the milestone. I was hoping there was some more solid facts on when she might start holding her head up or cooing, but nope, it could be anywhere from now to a year old. It helped me remember that Ella is Ella and will do everything in her own time.

May the force be with you....

2010-04-08T20:55:00.000-07:00

I buy my kids fruit snacks... Yes, I know, I am a horrible mom that allows my children to eat sugar filled snacks at least once a day. It really has never bothered me though, I mean, it's just a fruit snack.. Until the day I bought Star Wars themed fruit snacks and I heard this from my youngest son.

"Mom, don't you think Ella looks like Yoda?" I looked over and he was holding a Yoda shaped fruit snack and comparing his baby sister's features to his lime green Yoda fruit snack.. Seruiously? Yoda? I mean, I would love for any of my kids to be as wise as the great Yoda, but how does a 3 year old think a baby resembles a minature lime green Yoda? I am afraid to send the fruit snacks in his lunch now for fear that he will whip out the Yoda piece and tell all of preschool his sister is Yoda. Sure, they are both pretty bald and have the same nose, but the 3 year old needs to learn you don't tell a girl they resemble a green character from a sci-fi movie.... Kids... The minute he tells me I resemble Jabba the Hut , he is out on the streets.

I forgot to mention something really awesome about our vacation. We got to see my Dad (Grandpa Jeff) and the boys got to spend time with him flying kites on the beach. It was so neat to watch them all flying kites and bonding. He doesn't get to spend a lot of time with the boys since he lives in California, so to get pictures of the 3 of them doing something together is so special to me. I love my Dad (and my Mom too, but we'll save that post for Mother's Day). My Dad is a quiet guy but he never missed an opportunity to tell me he loved me or how proud of me he was. Seeing him interact with my kids and just enjoying it so much was pretty cool. He isn't a "kid" guy, I think their fast movements make him a little nervous, but for my boys he trys so hard and I love him so much for that. Dad, thanks for the kites and bubbles and calling me right after the earthquake to make sure I wasn't dead. I love you....

Tomorrow is Friday, which means softball. I am a little nervous. I am going to be playing again and well, it has been 11 months since I have played.... Now, don't get me wrong, I suck at softball whether it has been 11 days or 11 months between games, but at least when I play regularly I am able to make it to first base without falling on my face. If I don't post for a week, please assume I fell on my way to first, broke my wrist and can't type. I really enjoy softball as I take pleasure in sitting in the dugout and trash talking the first base coach from the other team. It started when I was pregnant and bored since I couldn't play. No guy would hit a pregnant girl, so I assumed I was safe to tell them their batter hit like a girl. Now though, I have to actually play so no more smack from me. Back to trying to remember to step with the opposite foot when throwing and to drop the bat if I have to run to base.

Well, off to bed and a busy day at work tomorrow. I feel like I should post something about Ella as this is her blog, but really, not much to say other than that according to Reed she is Yoda.

Silly boy, he is.

Happy April my friends!

2010-04-06T22:08:00.000-07:00

April is a happy month, full of sunshine, pastel colors and my baby boy's birthday. It's the kick off to Spring and Summer and I am a warm weather girl, so I am in love with April!

We just got back from what we like to call the happiest place on earth. Not Disneyland, but Coronado, CA. I have been going to Coronado since I was about 10 or so. I am in love with the beach and the Hotel Del and the shops and the food and the jets that fly overhead and everything that is Coronado.

We always go at Easter. I just love seeing all the flowers in bloom and helping my boys find Easter eggs on the Windsor lawn at the Del. We couldn't wait to show it all to Ella. She seemed rather unimpressed...

We did get to experience an earthquake while we were there and that was an adventure. I have been in one other earthquake and it pretty much scarred me for life, so this was rather traumatizing for me. Have I mentioned I have control issues? Well, an earthquake is something you can't control. One minute, you can be sitting on a patio enjoying live music and a diet coke and the next thing you know you feel like the ground is rumbling and you wonder if the second story patio you are on is about to hit the ground. The worst part is thinking that if the patio does collapse you will probably crush your very favorite sister in law who is is her hotel room directly below you. No fun. Give me a hurricane or a tornado any day, those, I can prepare for...

The trip home...Well, let's just say that we were about 2 inches from Ryan throwing up on Reed's head and for some reason Mike and I couldn't stop laughing as the whole scene played out. I think we were exhausted and not really believing that Ryan was throwing up in the back of our new car, but it seemed pretty funny at the time. Reed made it out OK and Ryan seemed fine too... :)

Other than that we had a great Easter and spent time at the beach and Legoland. Ms. Ella got to experience her first theme park, first beach visit, first earthquake and first Easter all in one weekend. We were busy bees.

Ella has entered this stage where she is more awake during the day and curious and just wants to take in everything around her. She has "cooed" a couple of times and it is so darn adorable. I am busy at work so she has started spending some days at her Grandma's so I can focus on work again. I miss her so much during the day and can't wait to get home to cuddle and have bath time and hang out with her. She is getting so big.

I really don't dwell on Ella having Down syndrome these days, I tend to dwell on more important things like crushing Brigid in an earthquake or the fact that it is now hot out and I can't fit into anything but sweatpants and that sucks, but sometimes, when someone tells me how beautiful she is (which happens all the time of course!) I hold my breath and wonder if they will ask if she has Down syndrome. I don't actually think anyone would because it sure would be akward for them if they were wrong, but I wonder to myself when are people going to notice? Will they stop telling me how beautiful she is? Will they look away because they don't know what else to do? Will they whisper to their partner about how sorry they feel for us and they are glad it isn't their baby? I spend a few sad seconds thinking that people will, one day, look at her differently, but then I remember that it is my job to educate them on why she is still beautiful. I mean, Ryan is so skinny that at football I spend 1/2 the time making sure the other moms know I feed him, so really, it isn't any different, right? Instead of talking loudly to Mike about how much Ryan ate at dinner the night before, I will tell anyone who asks or looks curious that she has an extra chromosome and how it makes us love her even more.

We have a busy few weeks coming up. We finally are going to meet with the DDD -can't for the life of me remember what it stands for, but it is the state program to get Ella her needed therapies. We want her therapy to begin by the time she is 12 weeks old, so we are anxious to get the meetings and paperwork out of the way so my little Ella Bella can get going on her strength training. We have her big 2 month appointment next week and she better have gained weight and she finally sees the eye dr later this month. Oh, it's also Reed's birthday soon and the little chunky boy wants a robot. See, we failed at Christmas and got him a robotic dinosaur, which, according to Reed, is NOTHING like a real robot. He wanted a real robot, that walks and talks and is white, so I am now on a massive hunt to find a real robot that is easy for a 4 year old to control. I tried at Christmas and came up with the Dinosaur robot, I can't fail again...

In parting I leave you with a picture of the boys. Reed is going through a stage where he thinks smiling nice isn't cool....

What a week...

2010-03-29T22:04:00.000-07:00

Sorry I went missing! I had so much pent up emotion that the first week of blogging was easy, I just sat down and the words poured out of me. This week, it has been harder. I sit down to write and I type a whole post and then delete it. I mean, do you really want to hear about how difficult it is to own your own business or how my children and husband embarrass me on a daily basis? I didn't think so. :) But, just in case you did, scroll down.

Spring break is over and life has settled into this crazy but normal routine. I have been watching this:

Reed at his first flag football game

and adoring this:

Between sports, school and my kids, by the time I have the peace and quiet to blog, I am fast asleep. I miss writing though and am hoping I get my writing mojo back this week!

Why do my husband and kids embarrass me? Well... Ryan had his first real "play date" this last weekend at our house. I was a little bit of a nervous wreck. At some point each day, I am afraid one of my kids might get hurt by randomly running out into the street and getting hit by a car or by ingesting 10 pretzels at a time and choking. SO, now I not only have to worry about my kids, but for 3 hours, I have to worry about another kid that I don't know all that well. Sure, I could let them go off and play alone, but leaving 3 boys alone in the basement seemed like a bad idea, so I came up with the idea that we should all go to the park. Bad idea. First - Ryan doesn't seem to play well with others. I am horrified by this fact as I thought it was just his little brother, but apparently any idea that isn't his just isn't cool and he refuses to do it. Great when he is 13 and offered weed, but not so great when he is 6 and needs to occupy his friend's time for 3 hours. The park was turning into a disaster. But wait, Mike would save the day! He was going to play football with the boys. Perfect! Oh, wait, you mean it isn't a good idea to kick a football as high as you can into the air and hope the little boys know it should bounce first before they catch it? No, it isn't a good idea at all. Poor Ryan's friend got beaned in the head with the football. Awesome. First playdate and the friend probably has a black eye. I was so embarrassed. How do you tell the mom that the giant bump was from a football thrown by your husband? Yeah, it wasn't fun. I don't know if he will be allowed to come back...

Work on the other hand wasn't embarrassing, it was just awful last week. It was a week where if you didn't own your own business you would call in sick for 3 days straight just to avoid the gloom. I don't have that luxury, calling in sick means the gloom just finds you at home under your covers so while the week sucked we all forged ahead and hopefully bad news comes in 3's so we are officially done with bad news for a while.

I didn't really have much to post about Ella. She is doing great, but then, tonight, as I was feeding her, I looked at her and got so sad. She looks so big now and I miss my little baby. To most she is still a little baby, she probably only weighs 6.5 lbs, but to me, she is no longer the little newborn. She has grown out of her preemie clothes and is up more during the day and eating more at each feeding. All signs she is growing up. I don't like it. I want my little 5.5 lb baby back! I can't believe that tomorrow she will be 6 weeks old. The time has flown by. In 6 weeks I have changed so much as a person and have come to love my little bean more than I ever thought I could love something. I relive the day we had Ella alot in my head. Not the Down syndrome part, but the having a baby part. I relive the first night at home, the first bath, everything. I cherish it all because I know this is the last time I will ever be doing this and I love every minute of it. I wish I could freeze time for a while. Ryan would stay 6 and so helpful and caring, Reed would stay 3 and be my little heartbreaker and Ella would be 6 weeks old and need me so much. Every day that passes seems like a year in terms of how quick they are all growing up. I just want them to be little. I think this is how people have 10 kids, they just love the little feet and kisses and cuddles and don't want to miss it. Now, I am not delusional, I am no super mom and 10 kids is 7 to many for me, so instead, I will hug the 3 I have more, I will play instead of vacuum and sing instead of talk on my cell phone. I will go on the field trips and save box tops for box top day at school. I will swing Ella in my arms instead of using her swing. I will do what I can to live these moments with them.

I am off to bed. I'll be back tomorrow. I got my mojo back.

Just a boring day around here...

2010-03-23T21:59:00.000-07:00

I don't have much to report tonight. I did spend an hour dancing with Ryan, Reed and Ella to a CD it took me about 4 hours to make (apparantly I am MP3 challenged). Is it bad I am in love with a song called Bartender by T Pain? I am so unhip, I guess this song is old, but I just heard it a few weeks ago and yes, I did wake up this morning and go straight to the computer to play it. I am trying to hold on to my youth... Unfortunatly, I think the longer I try to hold on, the more silly I look. Imagine a mother of 3 jamming to rap music in her SUV. Yep, that was me today. I am so cool. :)

Other than that it was a normal day filled with work, homework and kids who don't want to go to sleep.

Mike started a new workout routine and since I refuse to give in to working out (how long can I milk this having a baby excuse?) I have an hour a night to spend time alone. Before Ella was born I would have spent this time catching up on all the shows I missed, but now I save that for her middle of the night feedings. I normally post to the blog, but I said I was taking a break for a night, I mean, I am not that exciting and I didn't have anything to post. BUT then I went on the computer, typed down syndrome into google and spent 2 hours reading news articles about down syndrome. I tend to stay away from reading to much about down syndrome as I am trying this one step at a time approach to life, but I figured reading news articles was different, so I read everything google had posted on the first 2 pages. It was awesome. I read about advances in medicine, weddings, early intervention techniques that have worked, etc. There was so much to read and it all seemed to actually reference real people with Down syndrome, not text book speak and clinical research jargon.

I came acrosss one thing I wanted to share. It probably doesn't mean as much to you as it does to me, but reading these quotes was a good way to end my google searching.

http://www.thepreciouslivesgroup.org/uploads/What_Parents_Wish_Theyd_Known.pdf

Wish I had more to say, but I am even boring myself tonight, so I am off to bed now. Ms. Ella is fed and hopefully asleep for the next 3 hours, I must get my beauty sleep in now!

2 steps forward and one step back

2010-03-22T21:09:00.000-07:00

Today stared out crazy, kids back in school, forgot to set the alarm.... Reed was, oh, just an hour late for school... Ughh. Welcome to Monday. The middle of the day was uneventful. The last part of the day? It sucked...

Why did it suck? Well, first, Mike and I had to start preparing ourselves for the tax bill we have to pay in less than a month and that was no fun. Since we are self employed we save money from each paycheck for taxes and then, right around April 15th we part with all that money and while it was never ours in the first place, it still makes my stomach drop a little to write that check every year (well, technically Mike writes it. If I was the one handling our finances we would own 1 boat and 1 very fast Maserati and have zero to pay to Uncle Sam, which is why I handle dinner and Mike handles the bills :) ) Thinking about taxes started my afternoon off poorly and it just got worse...

We have been waiting for Ella's Karyotype blood work to come back from the lab for 5 weeks now. The Karyotype blood work is where they photograph the chromosomes and cells in the blood and count them. Basically, it is the way to confirm Trisomy 21 (Down syndrome). We received the preliminary results from the blood work on the Friday after she was born, but we have been waiting on the "written proof" since then. We wouldn't be so anxious to receive the results (being we already know that she has Trisomy 21) but without the results back we can't move forward with her therapies and the state application for aid. So, I have been waiting and waiting to get it back. Today I had finally had enough waiting and after some google searches realized it shouldn't have taken this long to get the results and I started calling around to see how we could speed it up. I reached a nice woman in medical records at the hospital where Ella was born and she told me to come in and get the results.

I was frustrated that the results have been there since 3/3 and no one has figured it out but happy that they were there and we could get moving on with the state stuff.. What I wasn't prepared for was actually reading the results...

I don't know why getting this one piece of paper affected me so much. I sat in the car after we got her records and read and re-read the results. It was pretty basic stuff, confirmed she was a girl, listed her birth date and height and weight, but then, right under her vital information it says:

INTERPRETATION: Female chromosome complement with an extra copy of chromosome 21 (trisomy 21). Trisomy 21 is consistant with the clinical findings of Down syndrome.

I read this and right then and there, in the parking lot of Fry's (where I was stopping to buy the oh so important chicken nuggets for dinner) I started to cry. I don't know why, but holding this piece of paper, seeing the words on it, made me sad and angry and almost sick to my stomach. I know Ella has Down syndrome, I didn't need this paper to confirm it, but seeing it in writing by a genetic doctor seemed to make it so much more real. My little girl got her first ever progress report and it alreay has her labeled. I wanted to take the paper and throw it away.

Soooo.. How did I get myself from crying in the car to buying chicken nuggets? By calling Erin. By telling her I finally got the results. By telling her it almost made me cry (I didn't want to admit to actually crying). By hearing her say. "OK, so you have the results. You have known she has Down syndrom for 5 weeks, what's the big deal with a silly paper saying it?" Right. What's the big deal with the paper? I couldn't answer her. I just agreed and then, right there between waffles and whipped cream, I stopped feeling sad and angry and remembered that just 1 hour ago there was no big deal and I thanked her and found my chicken nuggets and came home to my boys and life went on.

I needed to remember that no one, no doctor, no genetic counselor, no one is going to label my baby as anything. Not me, not a doctor, not a teacher, no one. She might be slower to talk or read or walk, but that doesn't make her a simple diagnosis on a piece of paper. That makes her - her. I know this piece of paper is important for the state and her doctors but to me and Erin and everyone else, that piece of paper is so unimportant in the whole realm of Ella's life. Yes, she has Down syndrome, yes, it was confirmed by a dr. but that test, that paper will never define her. NEVER.

My night got better. I got my bottom kicked by a 6 year old in the Wii and I ate some green beans (did I do a blog post yet on how much dieting sucks?). I looked at facebook and admired a VERY cute 10 month old baby I know and I cuddled with my husband and my baby. Screw her paper diagnosis. She rocks at cuddling and looking cute in her swing. That's all I need! Thank you Erin, thank you Mike (for basically being the guy version of Erin and saying the same exact things) and thank you to my mother who bought my babt what resembled skinny jeans and called them capris. Oh, to be Bridget.... (yes, I did tell her to take them back.)

I am off to bed. While I was very happy spring break was over, I forgot that meant I have to wake up early and get kids fed and off to school. No fun and not easy to do when you spent the 4 AM feeding watching 16 and Pregannt and crying your eyes out.

Eyes, toes and pinky fingers...

2010-03-21T21:35:00.000-07:00

Today was one of those days where you want to run away and hide from your kids. The kids who don't stop asking for things or yelling at each other over who gets to sit where on the couch. It was one of those days where no matter what tactic you tried, they refused to listen. I was nice, I was mean, I tried bribes, nothing. It was as if I was talking to the air. I have never been happier for bed time. Now I get to sit with Ella, admire her little fingers and toes and stare into space. I love my boys, but spring break couldn't of ended at a better time.

Speaking of little fingers and toes.. A lot of people meet Ella for the first time and when they hear she has Down syndrome they are shocked. They tell us they don't see it and ask how it was diagnosed. It was officially diagnosed with blood work called Karyotyping, but when she was born the dr or nurse (I have no idea who saw the signs first) thought she might have it based on her eyes, her pinky fingers and her toes. I guess that often, Down syndrome babies will have pinky fingers that curve inward and Ella sure does have that. The other sign is called "sandal toe" when a Down syndrome baby will sometimes have a greater space between their big toe and the next one, like where the strap of a sandal would go. I don't see this one at all. Her toe spacing looks very normal to me. Compared to my toes which seem to have a very large space between the first and second toe, Ella looks almost like there isn't enough space, but the Dr. assured me that she has the space, so I believe her and moved on. The other thing is her eyes, they are more almond shaped and slant a little upward at the corners. I love her eyes, regardless of the shape or slant. Right now her eyes are the only way I can tell how she feels (she likes to squint and grunt when she is mad and when she is happy she refuses to shut her eyes, even if she is dead tired) and when they are open they are so clear and big that I just can't stop staring into them. I love her eyes, toes and fingers, even though they make her different, they make her so darn adorable.

Today was World Down Syndrome Day. I wish I could say we did something to help raise awareness of Down syndrome, but if you read paragraph one of this post, you would see Ella's big brothers made our day a little challenging and the only thing we raised awareness of was how many times I could take away Super Mario Brothers for the Wii before I was taken seriously (4). I feel bad, like I should have done something to make this day count for Ella, but I didn't know what to do. I am thinking that at only 4 weeks old, I can let this one slide but next year will be different.

One last thing I have been wanting to share. People constantly ask us how we have been able to handle this so well so soon. For us, finding out our baby has Down syndrome was no different than someone else finding out their child has autism or sending your teenager off to school one day and they get in a car accident and are severly injured. The initial news is hard to process, very hard. As a parent you never, ever want there to be anything wrong with your kids. We would all be kidding ourselves though, if we think that you can raise a child without there being a moment where something happens that is so horrible that it makes you want to roll into a ball and cry for them and for you. Whether it happens at birth or 20 years later, every parent will be faced with a challenge that won't be welcomed. Maybe it isn't health related, maybe it is a developmental delay or maybe something like seeing your child experience rejection for the first time, but there will come a time when you wish it wasn't happening to you and your family. It is how you handle this moment, this experience, that matters. You might run away from the problem at first, you might throw a fit or break a window with your fist because you are so angry, but when you are done experiencing the pain of the initial shock, you just have to pick yourself up and get on and that's what we have done. My new favorite saying is "It is what it is". I can't change what God has given us, I can't pray every night that Ella will wake up and be free of her diagnosis because that would be useless. All I can do is accept it and accept her. That is how we get by, by knowing our situation isn't unique and by accepting everything that is thrown our way, whether we like it or not.

I am off to bed and a busy week ahead. :)

World Down Syndrome Day - March 21st

2010-03-20T22:53:00.000-07:00

Ms. Ella enjoying tummy time....

I am not much of an activist. I have never had a cause to support or even really wanted to have a cause to support. I was happy working, playing with my kids and drinking wine at night with Mike after the kids were tucked safely into their beds. I vote for the president and I stand up for myself and my beliefs when I need to, but I don't really have one thing I support and pour my heart into.

By having Ella I now have something that I not only support but will be pouring my heart into. The day after we had Ella, I told Mike I was going to take everything that has happend to us and everything that I will learn as we go along and I am going to use it to make a difference. I really think what I want to do is be there for moms and dads right after they find out the diagnosis of Down syndrome. I can't tell you how important it was for us to have people come visit us in the hospital who listened to our feelings and then validated our feelings of loss and selfishness. Alot of what I was dealing with was how horrible I felt over how I reacted to the news but hearing other moms tell me they felt the same exact way made me be able to put those feelings to rest and just get on with our new lives. I know that I am not expert on Down syndrome, Ella is only 4 weeks old after all, but I am an expert on processing the raw emotion of receiving crazy, life altering news and not driving my car into a river to deal with it. I want other moms and dads to cry and know it is OK, I want them to know that I did think for about 2.5 seconds about just giving her to a family that could handle a special needs child and that it was ok to feel that way, that you will love your new baby so much that it will all be just fine. Your baby needs you, but in a way, you learn you need them more. You need them to look at you and grab your finger and fall asleep on your chest and just do those baby things to help you remember to take it one step at a time and to cry when you need to and to hate the world still every now and then but that you have a baby that needs you and that's the only thing that matters. New moms and dads of a Down syndrome baby need to know that life isn't over. I want to help them with that.

SOOO, why all this talk about my new found feelings of wanting to help others?? Well, tomorrow is World Down syndrome Day. I have one request for all of you. Send my blog to other families you know because somewhere out there is a parent who will be just where I was 4 weeks ago and they might just need this little blog to help them out in those first few days. They might need to talk to a new mom and dad of a Down syndrome baby and I want to be there for them. As Ella gets older I imagine we will use these types of awareness days to help raise money for research for those with Down syndrome, but right now, only 4 weeks into it, all I can offer is my support to those who are just like us.

On another topic, I am feeling guilty.. Why? Because I have 2 other kids and no other blogs named RaisingRyanMichael or RaisingReedMatthew.com... I think I have already taken more pictures of Ms. Ella than I have taken of Ryan and Reed combined in the last 6 years. I feel like if my other two kids knew how to type a web address into the browser window and saw how much time I am spending on blogging about Ella they would use it to get more toys and a later bed time... I know that this is a silly feeling and Ryan and Reed are just fine and in fact I have been so much more aware of spending time with them lately that they are probably sick of me hanging around them so much, but I still feel bad. I think this has to do more with learning how to juggle the needs of 3 kids more than anything else, but mommy guilt is no fun. I keep telling myself that Payton and Eli Manning are 2 of a 3 kid household and they all turned out just fine, but because none of my kids are exhibiting superior football skills quite yet, it isn't helping as much as I would like it too. I just don't want my kids to be the one on a reality show one day saying that had their mother just of paid them a little more attention they wouldn't be searching for their 15 minutes of fame by eating cockroaches or proclaiming their love to a washed up singer. So, because of that fear, I took pictures of all 3 of them tonight and I sat and watched The Princess and the Frog with them and I read about kangaroos and I let them have popsicles and stay up late. I also practiced throwing a perfect spiral with them and talked about how silly March maddness is (really Kansas and Villanova????) They better remember this!

I will leave you with a picture of my 3 kids...

I guess this is a milestone...

2010-03-19T22:55:00.000-07:00

See this picture below?

Well, about 2 hours ago, my dear little baby fell off a bench in this carseat and I have never been so horrified in my entire life.

I would consider this a milestone. Not one that you put in a baby book or brag about to your perfect friends, but more of a milestone for a not so perfect parent to remember and reflect on one day when the baby they watched tumble off a park bench in their car seat is 10 and seems to have gotten on just fine with life, regardless of the park bench incident.

It took me 3 kids to achieve this milestone, but tonight, in front of friends and a softball team, I did it, I somehow managed to let my child fall off a bench on to the dirt in her carseat while I was rocking her.. Yep, I rule as a mom.

She didn't seem harmed at all by the event but I was mortified. Does this really happen to people in public? How embarrasing! I picked up the car seat, saw her still strapped in tight and I realized she was fine, but let me tell you, I will replay this incident in my head for a while.. How is it possible I have two other kids and this never happened to me before? Everyone around to witness this event told me that this happened to them with their own kids at some point in time, but I think they just said that to make me feel better.

To add to my great night, the housekeeper decided to overload one of the outlets while vacuming and the entire house smells like an electrical fire just took place (but there was no note to explain the incident, just a burnt outlet, an extension cord keeping the fish tank running and a VERY bad smell throughout the house). My super duper husband left his cell phone at the restaurant we had dinner at and I went to target to buy formula and of course they were out of Ella's super expensive and apparantly super exclusive formula. I didn't remember that Target was out of formula until her 10PM feeding... So, poor Ella not only got dropped in her car seat tonight but she had to settle for different formula for her feedings until morning. I swear, when it rains it pours...

On a happier note, it is Friday and I am looking forward to no work, no deadlines and hanging out with the boys and baby this weekend. I need a do over of today! I am heading to bed. Kiss your babies and don't rock them on park benches this weekend, it can be a dangerous sport!

Just Breathe...

2010-03-18T22:45:00.000-07:00

Ella had her 4 week check up on Tuesday. It was a huge deal for us for a few reasons.... 1. She HAD to gain weight at this appointment or we were back to more dr's and tests... 2. Mike and I were sure that this was the big appointment, the one where we would hear all the things that we were going to be different because Ella has Down syndrome.

Well...

1. She gained 7 ounces!! Yeah!! I have never been so excited to see weight gain in my life. Her goal was 7 ounces and she did it! Not an over-acheiver, but thats OK, she did just what we asked of her and that's all that mattered.

2. After the big weight gain excitement, I was ready for the "talk". I was sure Dr. Sudha would sit us down and tell us all the things that we would find different about Ella in this next month. She didn't do that... I thought maybe she forgot to bring it up. I asked her what we should be looking for with Ella and her having Down syndrome and if there was anything we need to do differently. She looked at me, said - Nope - and went on talking to us about tummy time and RSV warning signs. I didn't want to dwell on the Down syndrome question, but I asked her again if we should be doing anything different or if Ella would be doing anything different. She told me no again and basically told us to love her and feed her and play with her and that is it. She is just a normal baby..

Just a normal baby.... How funny that sounds now, 4 weeks after what I thought was the worst day of my life... 4 weeks ago nothing was ever going to be normal again, no beach, no eating out, no playing outside, nothing normal for us.. Well, let me tell you, in the past 4 weeks, Ella has:

1. Gone out to eat with her mom and dad who were dying to get out of the house after a long time on bed rest.

2. Is going to the beach for Easter

3. Played outside (or slept peacefully as her brothers played around her)

4. Been a totally normal baby

Only 4 weeks old and already she is proving me wrong... :)

I know that the challenges of having Down syndrome will come eventually and that just makes me a nervous wreck. I wish Down syndrome had a timeline that I could reference to know what to expect and when to expect it, but it doesn't. She could walk on time or she couldn't. She could say her first word right on schedule or it might take her an extra month, or year, we just don't know. This is what is no fun. I am the type of person who likes to control everything. I know we will be putting her in physical, occupational and feeding therapies to be proactive with her development, but god, do I wish I knew which areas of development she would need the most help in. I am sure as she grows we will be figuring it all out, but right now I feel like I can't focus my energy on the things that she will really need, I just read about EVERYTHING that might go wrong and make myself a nervous wreck. I am learning to be different though, trying hard to just slow down, live one day at a time and just worry about what I can control right now. It's not easy, but I am working on it!

Not much else to report. It's spring break here in Phoenix, so the boys are home this week and having a blast making the house a mess and annoying Mom. I am having a blast with them too. I love feeding Ella while the boys sit with me and tell me stories and try to get me to laugh with their newest knock knock jokes. It is just a perfect way to spend a few minutes a day... Me, my boys and my baby.

4 weeks already?

2010-03-16T13:20:00.000-07:00

Ms. Ella Lynn is 4 weeks old today. These 4 weeks have flown by and have been so life altering and so predicable all at the same time.

We are just like every other family with a new baby. No sleep, worrying over how much she eats and poops, begging for just 10 more minutes of sleep before the next feeding, hoping our 2 other kids are getting enough attention, taking the older two to sports, birthdays, homework, you know, just normal life.

On the other hand, nothing is normal in our lives right now. We are going to doctor after doctor checking on her heart (all good), her eyes (still waiting), her feedings (getting better). We are learning all about early intervention programs and how to apply for the disability programs she will need through the state. We are meeting moms and dads of other kids with Down syndrome and learning about their experiences. We are making sure Ella is going to be afforded every ounce of therapy and extra help she will need.

I am embracing my new role of being Ella's advocate but sometimes still feel like I am in this dream world and I will wake up from it still pregnant with a baby in my belly that doesn't have any extra chromosomes. I know that isn't going to happen and I have accepted our new life, but there are times I catch myself thinking "is this really happening to us". I wouldn't trade Ella for anything but just 2 months ago my thoughts about having a newborn were more along the lines of how fast I could get back into my bathing suit, not about how fast we can get physical therapy lined up and what exactly having extra chromosomes mean.

Everyone we meet keeps asking us if we are allright. They look me in the eyes and say things like "are you sure you are OK" and "do you need to talk?" I feel weird because I am OK. I am still me, I still get mad at my kids and frustrated when Ella won't eat. I feel like I should feel different or be crying all the time or not want to hold her or something. The only things I feel are happiness at our new family and anxiousness (is that a word) for the future. I worry about a lot of things that are out of my control right now but I worry anyways. Will Ella have friends in school? Will people look at her funny when are out? Will she drive, go to prom, have a boyfriend? I stay up at night worrying about these things and I know I have to stop and only worry about tomorrow, but I can't. I guess if that is the worst thing that I feel then I am OK. I worry about the same things for my other kids too and that helps me get through the night. Just because they are "normal" doesn't mean life won't be hard for them too at some point. Life is hard for all of us and how we embrace the challenges makes us what we are as adults and I hope Ella learns that even with the challenges she faces, she will have a family that is always there for her and love her no matter what.

Ella has her 4 week doctor appointment this afternoon, I am anxious to see how much weight she has gained. The weight issue has been our only problem so far. She is little and the dr had wanted to see more weight gain by now. We have been doing everything we can to get her to eat more, but she is very strong willed already and when she is done, she is done. No amount of bribing (I tried to bribe her with her very own Prada purse as soon as she could walk, no luck) works. We think she is just a slow starter and want to give her time to figure out this new world and eating and all that. The dr's like to immedialty jump to scary things like feeding tubes but we think that option is a long ways off. Hopefully I will have good news to report about her weight gain after the dr. apt this afternoon!

Other than being a little shrimp, she is doing great. She loves watching her brothers argue and she seems to love to be out and doing stuff with us. She justs fits into our lives so perfectly and while I miss my sleep, I wake up to feed her so excited to just stare at her for a little while. Ryan and Reed are the best big brothers. I worry that their excitement might result in smothering her little head sometimes, but with a gentle reminder they back away and admire baby from a far.

Ella has been a little trooper and is coming along to work with Mike and I. She does great and makes it much more fun to be at work, I mean, there is nothing quite like using my desk as a changing table or answering the phone while I am holding a burping, squealing baby. I still plan on conquering the world, so it is good that she is so laid back about hanging out with us at work. :)

I will leave you all with a picture her Grandma Bridget took this weekend of her. I think she is precious and perfect, don't you!

Friends... Who needs them...

2010-03-13T14:01:00.001-08:00

I do!!!

I think most people would say I am not an overly "friendly" person. I am pretty guarded and always felt that I didn't need alot of friends. One or two close friends was good for me. Well, let me tell you, Ella taught me a very important lesson in her first few days of life. Friends are just what you need when you feel like the world has caved in on you.

I mentioned that Brandy and Susie stopped by that first night. It was so great to see them and such a shock that someone would come to the hospital to see us! It was even better when Brandy came back the next day just to say hi. I was on cloud 9. When I found out I was pregnant with my third baby, I felt like part of the "3 kids" club. When I found out Ms. Ella had down syndrome, I felt like I would be kicked out of the club (irrational, yes, there isn't even a club). Brandy coming back that next day made me feel like our friends would still like us and hang out with us! It was such a silly feeling but a process I needed to go through. We were then visited by Wade and Jill (friends from softball) and I suddenly felt like Ella was bringing me out of my shell. She was forcing me to talk to people and I actually liked it!

Ella also made me think about a friendship I have had for almost 17 years. There was a time when Erin and I were inseperable and there was a time when we didn't talk for almost 4 years. Having someone with you on a day like the day Ella was born who knows you so well was so important. The few days after Ella was born were so confusing and emotional, I needed to talk to someone that knew the "real" me. I didn't have to hide anything from Erin. I really didn't have to say anything either. She knows me so well that it was like her being in the room was enough. We became friends again because of work, but I wonder now if this God I say I don't believe in knew that one day down the road I would need her to be there for me and he was just getting us ready for that day.

That was the first time I remember thinking that Ella having down syndrome was actually helping me in a good way. She was forcing me to talk to people about more than silly little things like what vodka I like (I could talk about that topic for days though) or things to do in San Diego. She made me realize friends are good to have. They don't judge you or stop coming around when life gets hard. They actually come around more and do things like get you in touch with others in your same situation or make you dinner or just be there and make you laugh. I want to be a good friend and have good friends. Thank you Ella for helping Mommy realize this.

A new day...

2010-02-25T19:35:00.001-08:00

I know that I am so fortunate to be married to Mike. He is the rock that sometimes even a strong, control freak, type A personality like me needs. I think I held his hand for 2 days straight while we were in the hospital. He never left my side. He also has an ability to cut through emotions and just get to the root of a "problem" and talk so sensibly that it allows me to "see the light" and move on. We spent so much time talking about our new life and Ella and he allowed me to say everything I felt multiple times over and never once did he tell me I was silly or to stop talking. He did though just make it all seem like it was going to be OK. He was calm and collected and everything I wasn't. He was pretty much amazing and he has been amazing through everyday of this journey. Just a few weeks ago I don't think I could have loved him any more than I already did, but I was wrong. He is the strongest, most kind hearted husband and father and loves Ella so much and is so accepting of our new life. I am one lucky girl.

But I digress.. this is about Ella, not my perfect husband... :)

That next morning I felt like a new person. It's amazing what sleep will do for a person! I just wanted to be with Ella. I wanted to hold her, study her, let her know that mommy and daddy are here and will always be here for her. I didn't feel so sorry for myself. I felt sorry for her and the challenges that will come her way but I wanted to be with her to protect her.

We met with the Dr. for the first time and it was so helpful. She was great (as was all the hospital staff) and took the time to talk with us about Down syndrome, next steps, worries and anything else I asked her about. She said that we did need to worry about 3 things at that moment: her heart (she would need an echocardiogram to rule out heart issues), her hearing and her intestines. Ella was not yet sucking so eating was quite a challenge. I equated that to Down syndrome. She put that fear to rest and reminded me that a lot of babies don't eat right away. I then remembered that one of my other kids (bad mom, I can't remember which) had the same problems. That was so helpful. We made plans to get the testing done for the 3 issues we could have at hand right now and she then just told us to love Ella and do nothing else but that!

We spent that day reading about down syndrome, crying a little and just being new parents. I had asked our family not to tell anyone about her diagnosis yet as we wanted the message to come from Mike and I first. We composed an email and sent it out to our family and friends. This was a huge relief as now the "secret" was out and we could go about talking about Ella to everyone without having to go through the "she has down syndrome" speech 50 times.

Is this really happening? Day 1

2010-02-21T12:01:00.000-08:00

I wrote this the day I came home from the hospital. I didn't want to forget any moment of how I felt that day. I really enjoy writing and feel my true personality comes out when I put words on paper, but this time, writing this, I felt different. Like I was telling someone elses story. It was only 3 days later and yet, writing my story I felt a disconnect from the feelings I was writing. Looking back now, 3 weeks later, I think I was still in shock, still trying to grasp my new life. I was confused. I had a beautiful baby in my arms and emotions I had never had to face before. It was overwhelming.

Writing about the day Ella was born is the hardest thing I have ever had to do. On that day our lives changed forever. Having a baby always changes your life, but having a special needs baby and being forced into this new reality is surreal. I hated being pregnant, everyone knew that. It was a tough 9 months. From throwing up constantly to bedrest. I hated every minute of it. The only thing I liked was feeling her move in my stomach. It was a little secret her and I shared. I would be complaining about money, or bed rest or anything, and she would give a little kick and I would stop and smile. It was her way of kicking me out of my funk and it worked. Had I known then what I know now, I would have cherised every minute of being pregnant and her being safe from this cruel world in my belly.

My birth was amazing. I had never experienced true "labor" before. I was induced with my other 2 kids and had the epidural before I even really felt a contraction. This time, I went into labor on my own and felt these contractions that were awful, but so amazing at the same time. Mike and I were a little team ready to meet the contraction waves and time them and get through it together. It was such a great birth that it almost made what happened afterwards seem even more like a dream.

-----

The moment Ella was born, I held her amd compared her tiny features to my other kids. She had Ryan's lips and Reed's nose. She was little like Reed and just perfect looking (in that new born baby perfect way). I cried over the fact that I just gave birth and that she was finally here. It was a long pregnancy. From severe morning sickness to preterm labor, hospital stays and bed rest, the 37 weeks felt like years. It took a toll on the whole family, but now, finally Ella Lynn was here and perfect and our lives were all going to be back to normal. I think my tears were as much for the pain of giving birth as they were for being happy that the pregnancy chapter was now closed.

About 20 minutes after she arrived, all the sudden the dr's whisked everyone from the room and said they needed to talk to Mike and I alone. It was a weird feeling. I didn't get the feeling something was wrong, I thought that maybe this was what they did with all new babies. A little bonding time with Mom, Dad and the baby. My Dr. was standing at my side and there was a nurse practitioner I had never met standing next to her. I started to get a little worried. Why were they standing so close? The Nurse Practioner blurted out words that,while they didn't exactly make sense to me, made me shake. "Your baby has Down Syndrome". I went numb, I started sobbing immediatly. Giant, heaving sobs with a sound that I don't remember ever hearing my body make before. I kept telling Mike I was sorry and asking when I would wake up from this bad dream. I think she kept talking, showing us the "markers" that made them certain she had Down syndrome and telling us everything was going to be all right. People would talk to us about it, blah blah blah. This is really what I heard, words mixed with just noises coming out her. I am sure she said things that made sense and were meant to comfort us, but all I heard was my life was over.

I didn't want this, I wanted a healthy baby. I kept repeating over and over that this was a dream, that I didn't want this to happen. I was watching my super strong husband cry along with me. It was the worst day of my entire life. I had just delivered this beautiful baby, who to me, looked just like my other two kids and you tell me she has Down syndrome? It didn't compute with me. I cried and held on to Mike so tight I thought my fingers would break and felt bad for myself and thought my life was over. I wish I could tell you all of what the nurse and Dr. said, but I don't remember a single thing of that. I hated them right then. I hated that they had healthy babies and that they got to go home to their perfect families. I hated everything.

I don't remember if I was holding Ella or not, I don't think I was, but I don't remember. I remember the dr's faces and Mike sitting so close and holding me so tight, but I don't remember where Ella was right then. I now hate that I don't remember who was holding her. I hate that at that moment I was thinking about myself and not her.

We had our family come back and we told them and we sobbed some more and it was all around miserable. I cried and cried for everything I felt I had lost. I kept thinking my life was over. All the things we do, travel, go out to eat, play in the backyard, swim, it was all gone. I wanted to give her back. I wanted nothing more then to just go to sleep and wake up tomorrow and have this all be a dream. I kept thinking they were wrong. This wouldn't happen to Mike and I. We had a perfect life. I am only 30. I had some testing done to rule this out (and they did!!). I hated everyone who kept coming into our room and asking if we were OK. No, we aren't OK. We will never ever be OK again.

At this point, Mike and I had been up for about 30 hours. If the news we had just received wasn't enough, we were dealing with exhaustion and just the pregnancy hormones in general. It was all really overwhelming. I would say that I cried and sat and stared into space for a good 5 hours. It was just so much to take in. I knew nothing about Down syndrome. I hardly remembered how to take care of a baby and now I have to add this? It will always be one of the worst days of my life. Not because I don't love Ella, but hearing your child is going to be different than the other kids is the hardest thing to ever hear. Parents don't want their kids to suffer or be different. Life is already so unfair, why make it harder. We delivered a beautiful baby girl, but we also found out our lives would forever be different. How do you sort out those emotions? Why was I being so selfish and worried about my life. What about hers? I thought all of these things and I thought them over and over again. Like a highlight reel that wouldn't stop playing in my mind of all these emotions. It was hard to take. I remember they gave me a pill to help me calm down. It didn't work one bit.

I kept thinking about the things Ella wouldn't experience. Date's, driving, cheerleading, calling her brothers from a party because she drank to much and was scared to call mom and dad. I just wanted her to be like the other girls.

My family and best friend Erin were the reason I didn't get up from that hospital bed and run away. They each told me they loved us and they loved Ella and we are a family and together it would all be OK. Erin ran out and got me a book on Down syndrome, Brigid told us about other kids at her school with Down syndrome who were just awesome and thriving in a mainstream school environment. My mom called and broke the news to my Dad so I didn't have to go through it again and just sat by my side and admired Ella with me. Mike's mom was so calm (a little unlike her.) and just said that all was going to be fine. She hugged her son and was so strong for him. It was like we all just came together and formed this bond - a bond for Ella. My dad flew in (I told him not to, but he knew we needed him and was there so fast) and everyone just made Mike and I feel like life wasn't over, it was all going to be just fine.

We were really blessed to have our night nurse be a wonderful woman by the name of Mary Sullivan. By some act of God, Mary picked up an extra shift and worked that first night as my recovery nurse. Mary has 9 kids and her youngest has Down syndrome. It was as if someone knew we needed to talk to someone who had "been there / done that" and would be able to answer the questions we had. Mary is an awesome person and telling us about her daughter Kara is what got us through that first night. I will never, ever forget Mary and I hope to be friends with her and her family as we go through this journey. Mike and I aren't religious people, but Mary was a blessing from God for us. She made me realize that the way I felt was OK and normal. There is a mourning process you go through and that is totally OK. That helped us so much.

Our friends Brandy and Susie stopped by that night and I feel so bad for them. They walked in thinking all was peaches and cream and I felt the need to just blurt out that Ella has Down syndrome. I am sure they were shocked and uncertain of how to act. I just felt that I needed to get out that "first" time of telling someone and they were it! Sorry girls, but you helped me realize that I could tell someone and they wouldn't run away and never talk to me again. thank you... :)

After 40 hours of no sleep, Mike and I finally fell asleep and our very bad, horrible day was behind us. Thank God...