21 March 2016

World Down Syndrome Day 2016

Happy World Down Syndrome Day! We spread awareness on March 21 (3/21) because Down syndrome is diagnosed with 3 copies of the 21st chromosome are present. As in keeping with our tradition, I’d like to share a brief reflection on our lives this past year.

“And then, of course, we’ll do some genetic testing,” the nurse said as she unwrapped the blood pressure cuff from my arm. She was describing for me the upcoming OB/GYN appointments. I already had a child with Down syndrome and a miscarriage in my history. Naturally, everyone in the office assumed I was dying for a doctor to stab my pregnant belly with a huge needle.
“Nope, we’re going to pass!” I said with forced cheerfully.
She looked at me like I was crazy. “But aren’t you worried you’ll have another special needs kid?”

Everyone thought I was crazy. They pestered me at every appointment until it was too late for an amniocentesis, and then they said things like, “I see you refused the amnio,” like I’d won the lottery but was insisting on living in a two-room shack and eating Ramen noodles. It was a question I heard a dizzyingly number of times: “But aren’t you scared?”

And the deep down truth is that I was not scared. Not even a little.

So what if we have another child with special needs? The scar running down the front of Abigail’s chest is a testament to our strength. The small patch sewn on the walls of her tiny heart, the pink orthotics that stretch out her sparkly sneakers, the stack of appointment cards all witness our ability to thrive despite our special needs.

There is no big secret to surviving as a parent of a kid with Down syndrome. My life looks a lot scarier than it really is. I never would have believed it the first time I held Abigail. My heart was in my throat, choking off my words, eels slithering around my stomach, turning me nauseous. She has the dreaded curse (hushed, whispered) Down syndrome. Nearly five years later, I well know that no matter what happens to my kid, she’s still my kid.

There is a balance that I keep. On one hand, Down syndrome means serious business: heart defects, a spine and neck that are dangerously flexibility, early onset dementia. I was at a playgroup prior to Abigail’s heart surgery and the other moms there were honestly freaking out as they tried to pick a nursery theme. I realized in that moment that I will never fit in with those moms again. The day you have a conversation with a doctor about your daughter’s heart failure is a life-changing kind of day. Sometimes I am overwhelmed. Because on one hand, Down syndrome is a Big Deal.

But on the other hand, Down syndrome is trivial: Abigail walks, talks, colors on the wall, says “Please” and “Thank you,” and bosses her little sister and brother around on the regular. Statistically, she is extremely likely to graduate high school and get a job. There is a chance that she will live on her own, at least for a little while, and I just read a story the other day about a man with Down syndrome who sold his restaurant in Arizona so he could move north to marry his sweetheart. Once when Abigail had to have her blood drawn, doctors sent us to the children’s cancer ward (apparently the staff there were better trained for baby vein finding), and we had to walk through a circle of beds holding tiny, bald children, whose arms and legs were as skinny as wooden pencils. Towers holding plastic bags and tubes pumped drugs into their scrawny arms. With all that Down syndrome includes, it does not entail praying my child won’t die; wondering how to explain death to preschool siblings; buying a child-sized coffin. It is safe to say that at the end of the day, every day, I will be reading yet another rendition of Goodnight Moon and tucking Abigail into her toddler bed with her pink and white blanket. On the other hand, Down syndrome is a little deal.

I’m trying to raise Abigail and her sister, Eleanor, and brother, Theodore, to be productive citizens of the world. She comes with some unique challenges, sometimes they are harder and scarier, but most of the time they are not. As the parent of one special needs and two typically developing children, I can confidently say that all are equally stretching me to become more patient, forgiving, and selfless in that demanding yet endearing way that all small children have.

I will fight for my kids, lay down my life for my kids, and use my own personal allowance to buy them ice cream. At the end of the day, these babies are my babies, and that is all my Mama Bear heart cares about.


Kindra said...

Love this post.

Anonymous said...

This is beautiful, and your family is amazing.

Aunt Ellen said...

Always worth reading your posts. Thanks for being the amazing mom you are - your children are blessed to have you caring for them! Love, Aunt Ellen

Anonymous said...

Ditto, Aunt Ellen! TB

Anonymous said...

I grew up with two friends, twins, who were adopted and also Down Syndrome. I loved hanging out with them and only later realized that they were "different". But to 8 year old me, I didn't notice/care to ask. I think it's really admirable to approach this with an attitude like "yeah, just a different flavor of awesome, wonderful, crazy children" because at the end of the day, we're all different, and there's always something we each can learn. Lovely post. Also, your kids names are wonderful. Perfect!