Friday, October 28, 2011

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

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.

Monday, October 24, 2011

Almost Halloween!

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.

Friday, October 21, 2011

A lesson learned

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.

Friday, October 14, 2011

Hawaii has charts - Did you know that?

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.

Saturday, October 1, 2011

Welcome to October

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!

Wednesday, September 14, 2011

Ella has an Entourage!

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?

Monday, August 8, 2011

Upswings and Downswings and Wine with cool names...

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.....

Wednesday, July 20, 2011

Silly Toys R US...

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.

Tuesday, May 31, 2011

Did you know I have a sister in law?

~~~~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.


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.

Wednesday, February 16, 2011

The R- word..

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.

Tuesday, February 8, 2011

Already February...

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...

Friday, January 14, 2011

Thinking back..

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...