It's not because I don't think about writing about it. And it's not at all because I don't have opinions on the subject, or that it doesn't affect our lives. But the truth is? It's just not that big a deal in our daily lives.
Yes, Lilly was born with an extra 21st chromosome. And yes, it affects her in certain ways. She's a late walker, but she's getting so good at it now! (She's taking about 10 independent steps well now between Jon & I, or the couch to the TV, etc.) She's arguably delayed with verbal speech, although she's saying so many new words each day. She's even learning Maori words at school and sings them in their songs. And she's still using and learning new signs daily, over 100 signs in regular use. And yes, we do certain things with Lilly that most parents don't experience - speech, occupational, and physical therapies regularly.
But. It doesn't change the way we live our lives. We are just raising a little girl the same way anyone raises a child. She is just as beautiful, just as charming, just as devious as the next kid. She goes to preschool each day, loves her friends there, plays on the playground, comes home with red and green paint in her hair, and debates with me over what she eats for dinner. (My hope? vegetables. Her decision? bread, followed by cookies.) It's not that Down syndrome doesn't effect our lives, but it's where we place it in our lives.
But we're not hiding from it either. I am so proud of her every accomplishment, knowing that it takes her extra efforts in some circumstances. I think about her future, and whatever her goals are, I will 100% support her. And sometimes I worry - am I a bad parent for not focusing on teaching her shapes and colors yet, or not making her eat broccoli?
But I have faith in her. Faith in her abilities, faith in her spirit. If anything, she's taught me over the past 2 years that she will be whoever she wants to be (and what a wonderful person that is!). And she is not someone to be pitied, or underestimated. She is exactly who she wants to be, a strong, smart, amazing dancer, who has an obsession with Cookie Monster and Elmo. Who is memorizing the lines and dances in High School musical. Who loves to read and talk to her mommy. Who loves tackling her daddy, and holds hands with him as she falls asleep at night. And who is becoming an expert potty trainer, at the age of 26 months.
I've never quoted Colin Farrell before (and probably won't make a habit of it), but he has a son with a angelman syndrome, and I love his quote: "As far as I'm concerned, he's exactly the way he should be." I feel the same way about Lilly.
She is everything her mommy always wished she would be, even before the thought of Down syndrome came into our world. Someday, I'd like to write our story. About being told at 3 months pregnant that something was probably "wrong" with our baby and that we had "options." And worrying for the next 6 months that our child wouldn't be "good enough" for the outside world. (And yet, somewhere along the way, I changed my prayer to God that my child would be blessed with Down syndrome, instead of the opposite. I knew in my heart that she was the right child for us.) And meeting miss Lilly Sherman and knowing that she was such a tremendous gift; and from the very first day feeling so protective. And realizing along the way that she was not only a beautiful baby (she looks like her mommy as a child!) but that she was so smart as well.
The only negatives that we've faced along the way are not from my precious Lilly, but from those outside our immediate family, those who tell us negative stereotypes, or misinformation, with the thought they're being helpful. I could rant and rave for days about what DS is, and what it isn't, but I think more than anything, Lilly speaks for herself. At 32 inches tall and 27 pounds, she is changing the world, with each person she meets, and with each funny dance move she does.
I am so proud of the little lady that Lilly is becoming, and thank God every day that I have such a gorgeous little girl in my life.