March 21st is World Down Syndrome Day, and I it occurred to me today that that means that it has been five years since I found out that our little Ellie Bean had Ds. I was 18 weeks pregnant when we had the amnio done, and it was about a week until we had the results back, making March 21st pretty darn close to the day we found out that she had an extra chromosome.
We had our suspicions before-hand. The extra fluid on the back of her neck at the 12 week nuchal translucency test (when we also found out that we were having twins), combined with the particular heart defect that she had pointed at Down syndrome.
But it was still a shock to the system, holding the print outs of our (now confirmed) girls’ chromosomes in our hands and seeing the third copy of number 21 sitting there. I remember calmly talking about what this all meant with a very nice genetic counselor, who tried really hard not to cringe when she told us that we still had the option of trying to selectively abort one baby, but that at this stage it was very possible that I would lose both in the process. She was visibly relieved when we told her that abortion was out of the question. We loved our girls, no matter how many chromosomes they each had.
Then I went home and cried. A lot. I’m not going to lie about it. I was heartbroken. Not at the thought of having a child with Down syndrome, per say. I didn’t have much experience with people with Ds, but from what I had seen, they seemed like pretty happy, healthy folks. I was the loss of all the things I had envisioned for my child that hurt so much. She would never drive a car. She would never go to college. She would never get married and have babies of her own. She would never be a famous writer or artist or doctor or dancer. Would people make fun of her? Would she sit in her room, crying, because her sister had a date to the prom, but no one had asked her? Would she watch Laurel drive off to college and wisht that she could go, too?
After a couple of pregnancy-hormone fueled days of this, I hopped online and started doing some research, where I found that most of my fears were completely unfounded. People with Down syndrome do all of the things I thought she wouldn’t. I had an image of Ellie being shunted off to a dreary special ed room with the other “disabled” kids, like when I was young, but that isn’t how things are done any more. Next year, when she starts kindergarten, Ellie will spend a decent part of the day in a regular classroom with the “typical” kids. She’ll have extra help, of course, but it really isn’t like it use to be. One day Ellie will go to the prom, and there are more and more colleges that are opening their doors to kids with special needs every year! Our little Bunny’s future is pretty darn bright, and you had better believe that she isn’t one to feel sorry for herself.
A lot has changed in the past five years, but some of the biggest changes are happening right now. For the first four years of Ellie’s life, she was, quite frankly, coddled by Chev and me. She was our baby long after Laurel started to become her own little person. The combination of Ellie’s developmental and speech delays made her more apt to sit in my lap and snuggle than to explore the world. But something has changed. Ellie is starting to talk, and that has made her bolder, more confident. She has found her voice and at the same time she seems to be finding herself. It is a fascinating thing to watch. Just in the past few weeks, she has started to string words together into short sentences, and she can now hold a conversation with us about simple things. She has NO problem giving her opinion, either, and woe betide the person who tries to ignore her when she wants their attention. She is growing into her own person, and that person is pretty fantastic.
I can’t wait to see what she’ll be like in five more years.
Also, if you are interested in learning more about the college opportunities for people with Down syndrome, or are feeling generous, check out Ruby’s Rainbow and take their 3/21 pledge. The Ellies of the world thank you.