As you may imagine, I have had so many thoughts and emotions running in and out of my head and heart over the last several months - many of which I cannot put into words. There is a lot of weird things that happen when you face a crisis or more specifically when your reality changes dramatically. We never know what the future holds for ourselves much less for our children, but it feels more confining and sometimes less hopeful or more complicated and hard when you have a child with special needs. For L*ily, the future is undefined just like it is for Z*oe, but it feels like the box she has been given is smaller or as if someone has already determined what it will look like. Some of this is in my head of course - I have really heard nothing but encouragement from almost everyone I have encountered since learning of L*ily's diagnosis, but I struggle back and forth at times with being hopeful because I need to and she deserves it, but trying to keep a foot or maybe just a toe in reality - whatever that may mean. Everytime some stranger comments about her adorable tongue, I want to say - well, it sticks out so much because of her Down's Syndrome. Or when someone tells me that kids with Down's are always happy and I think about how no one is always happy and she should be allowed to feel something other than happy sometimes and that's okay. Then I remind myself that this is not what people mean or they just mean well, or D*ave reminds me that I might be a little sensitive and I should give people a break. He's probably right. As I sat in the Down's Syndrome conference a week ago, I was overwhelmed yet appreciative of the information and support. But at times I admit I wish we were not in this group of "those families" - you know how you sometimes say things like that - well, now we are there. Living it.
A few people have forwarded me a blog of a woman who is a writer and has several thousand followers. She has an almost 3 year old girl and a 3 month old girl with Down's whose diagnosis, like L*ily's, was unknown to them. I don't know how to just link you there - maybe one of you can assist me for next time! Her blog is www.kellehampton.com. When I read her blog for the second time about a month ago, she had put into words my thoughts of what this all means and I cried - she gives permission to share from her site with credit to her, so I wanted to share this excerpt from her from Mar*ch 29 since I can't figure out how to get you there directly from here:
"I've been thinking about perfection lately. I've stared at Nella so many late nights and marveled at her perfection. Because she is...perfect. And I wonder what it is about
different that makes us think it's not perfect? Why is it that we set the bar higher and higher and expect ourselves, our children to be flawless? What is it we strive for and once we reach it--this perfection--what have we acheived? It's never enough. Even the razor I used in the shower this morning tries to outdo itself with now six blades layered to give a more perfect shave because apparently the five-bladed prior model didn't quite master the hairless perfection we're attempting to achieve. It's just that I have learned so much about this perfection thing these past weeks, and I am finding myself cozily curling up with a new
me. A
me that has been cultivating for years, but is truly arriving to the place it's needed to be. The concept of
perfect is not flawless or four-point-oh. It's happiness. Happiness with all its messiness and
not-quite-there-ness. It's knowing that life is short, and the moments we choose to fill our cup with should be purposeful and colorful. And that's
perfection. And our Nella--what the world may view far from perfection--has begun to teach me that."
This is where I (Jennifer) am at these days. My dear friend A*my, who has a son with special needs, shared some thoughts with me when we were in the hospital. I couldn't hear it then so much but I am reminded of it often. She told me that when you have a child with special needs, its not that you forget about it, but you begin to see your child and the diagnosis is just a part of who they are. L*ily is an amazing little girl who is lighting up our life in so many ways and some days that extra chromosome makes me mad, but most days its not in the forefront of my mind when I look at her - her beauty and her potential and all the ways she is defying odds and melting hearts already overshadow the diagnosis and whatever it means.
