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....|
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
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.....|
Haha, LOVE that wine bottle!! And I can relate to pretty much everything you wrote here!! Good to hear Ella is doing so great :)ReplyDelete
What a great blog! I am an author and the proud father of a 38-year-old daughter with Down syndrome. I have written a novel in ebook form, A SPY AT HOME, which is available on Amazon. In this book I have a central character, Noah, who has Down. I invite you to read this ebook, and I would be very interested in your thoughts about the story. I can be reached directly at email@example.com.ReplyDelete
Thank you for your blog and for sharing your child with Down syndrome.