I didn’t really know anything very true about Down syndrome before our son came along two years ago; what I knew were notions — fuzzy, outdated, misinformed notions. The truth of the matter is, having a child with Down syndrome has opened up a whole new world for me, full of fascinating people and spirited little children with wills of steel. Our son has taught me more than I could ever teach him. It sounds corny, but just about any parent knows that lots of things that sound corny actually turn out to be true. He teaches me that everything in life is hard earned — even joy, even laughter. That the highs are so high because on some days you think they might never come around — but then, they do! He is the most impressive person I know, simply because he works so hard to get to the starting line for every task that a baby person must learn. But once he gets there, look out! He can’t wait to keep going ….as far as he’s concerned, he’s the funniest, handsomest, most charming person in the room. And he’s right.
In the days after his birth, I never imagined he would literally bring so much laughter into our living room. But it has been an emotional ride for me, trying to come to an acceptance, an understanding of him without always thinking about his Down syndrome first. It’s just that everything seems colored by it sometimes, even though the literature always tells you that your baby is a baby first. But separating the two has been harder than it sounds, and I’ve had many more tough days than inspiring ones. So it’s OK if you feel down about having a child with special needs, or about how you are coping with it. It really is. And trust, me you will get through it, and it will get better.
I hope to use this space to share some stories about how we got this far and what happens now. I’ll write about the rest of my “crew” too. That I’m here at all is through the graciousness of my son’s speech therapist, Sherry Kornfeld, who owns Early Bird Developmental Services and provides therapy through the North Carolina Early Intervention program. She asked me to write a blog one day when she must have been especially sleep deprived. I am receiving no compensation, and the opinions I express are solely my own.
My modest hope is that this blog can provide a few moments of respite or validation to any parent, but especially to parents of children with special needs, who on average have it harder than most. I won’t aim to be comprehensive or newsworthy, though if I am don’t expect me to repeat it. I hope to at least make you laugh once in a while, even if you’re laughing at me, not with me.
To introduce my family, there is my husband, who got a great job offer last year that brought all of us here to Charlotte, NC, from New York City. Now we are all living off his toil, as I had to quit my editing job and throw out my business cards (I saved a few) when we moved. Then there is our oldest darling, our nearly 5-year-old girl. Next are the twins, a boy and a girl, now 2. We came to Charlotte with our beloved white bunny, Jojo, but sadly he moved on to the rabbit farm in the sky early this year, leaving us petless.
As for our son, we found out about his diagnosis at birth, which was fine with me. I think knowing ahead of time might have made me sad or scared, and having twins in the belly is enough of a stress without that. But I can say now that there wasn’t anything to be sad or scared about. Please, above all things, try not to be scared if you have just found out your child will have Down syndrome. There will be plenty of time to be worried, or frustrated, or mad or sad, or confused, but just don’t let fear get to you. The expectations for what people with Down syndrome can do with their lives has never been higher, and there is plenty of help and support out there. Every child is different, of course, but our son is doing just great, and keeping up with his twin sister wherever possible. He also happens to be lucky in that he has none of the medical complications, like heart problems, that can sometimes come with Down syndrome. I know many people whose children have dealt with these issues, and although their lives may be harder at first, the rewards and the triumphs are the same. While I certainly feel blessed that our son is healthy, things have not always been easy emotionally. From the first, it was strange, traveling along this road with him.