A Letter to Myself on the Day I Found Out My Daughter Has Down Syndrome
When my newborn daughter was diagnosed with Down syndrome, I had no idea what to expect. Looking back, the cliché “if I’d only known then what I know now…” resonates more than I would have thought possible. That realization prompted me to write a letter to my 36-year-old self — that scared woman with a tiny baby and a lot to learn. Now, standing on the brink of 50, I realize I really am older and wiser. And very, very lucky.
Hey, it’s me. Well, rather, it’s you 13 years older and wiser. I’m writing to tell you a few things I wish I’d known on the day my life changed forever.
Before you read on, take a deep breath.
Ouch. Not that deep. You’ve just had a c-section! You’re still in the recovery room. You have just given birth to Sophie, your second daughter. The OB pulled her out, and everyone cheered. You promptly demanded more painkillers and passed out.
Now you are waking to dim and quiet. I know you want nothing more than to sleep. It’s not even 10 a.m., and already you have been through so much. Your water broke four hours ago — and three weeks early. You and Ray had to get 2-year-old Annabelle over to his parents and rush to the hospital. Then you had major surgery that resulted in a baby. What you deserve now is rest.
But something is about to happen, and I want you to be prepared. Oh, man, I so desperately want you to be prepared.
In a few moments, you are going to open your eyes and look around. You’ll notice that Ray and a strange woman (the recovery room nurse) are hovering over the baby, talking quietly. You’ll ask what’s going on, and Ray will say in a matter-of-fact tone, “We’re measuring the placement of Sophie’s ears. It looks like she has Down syndrome.” You close your eyes, certain Ray has made a mistake.
I want you to know two things. First, Ray is right. Sophie has Down syndrome. Second, everything is going to be OK. Really. I mean it. I know you are worried about how this will affect your family. You’re worried that Sophie will have a terrible life. But none of this is true. Oh, Amy, I wish I could hit fast forward on the remote control so you could meet the Sophie who just turned 13. She is mainstreamed in the eighth grade, meaning she goes to school with “typical” kids her age. (You will learn all the terminology soon enough.) She reads well and does math way better than you do. She’s got mad fashion sense, sings in the choir, and is a cheerleader. Yes, you — former president of your school’s speech and debate club — have a daughter who is a cheerleader.
Sophie gives you a hard time. (She is a teenager, after all.) But you are her favorite person in the universe, and she will give you a cuddle whenever she can. And believe it or not, you hard-hearted person, you will love it. Sophie is a fierce self-advocate, and she will teach you to fight hard both for her and for yourself. Sophie will make your marriage stronger. And she will give her big sister a chance to show that she is an awesome, empathetic kid who is far more patient and loving than you ever were. Most of all, Sophie will make you laugh harder than you ever thought possible.
When you finally have a definitive diagnosis, you will begin to learn the basic facts: In about one out of 700 live births, the baby winds up with an extra 21st chromosome. Sophie will also have a higher risk of future health problems, from leukemia to Alzheimer’s disease.
You’ll spend a lot of time considering just how society should refer to people with intellectual disabilities. You’ll wonder about Sophie’s place in the world.
She will give your life a meaning and purpose that you never expected to have, and she’ll give you hope daily, as you watch her make a best friend in kindergarten, dance in her first ballet recital, and tell your father, the family curmudgeon, “I love you, Papa.”
But first, you’ve got some scary stuff to deal with. A pediatrician will eventually tell you that raising a kid with special needs is like riding the rapids: The swells come one after another — some big, some small, and some unexpected. Some will knock you overboard. And actually the first rapid you’ll hit is huge: Sophie has a heart defect commonly associated with Down syndrome. She will need open-heart surgery when she’s just 4 months old.
You’ve got this, Amy. I know it doesn’t feel that way, but you do. At one point during Sophie’s first summer, you will yell at a nurse wearing hospital scrubs decorated with cartoon characters that there is no freaking way are you shoving a feeding tube up your baby’s nose and into her stomach. But you’ll do it. You’ll see things in the hospital that no one — not even I — can prepare you for, and you’ll handle it.
What I want to tell you is that you’ll be OK. More than OK. You’ll bring Sophie home after her heart surgery, and that will be terrifying. But you’ll keep her alive, and she will grow and walk and start kindergarten. She won’t be able to do everything her sister can, but she’ll come close.
You will never believe that everything happens for a reason, or that the universe only gives you what you can handle. You are not one for platitudes now, and you never will be. But eventually — not today, but someday — you will know you’ve got this. And that everything is going to be more than OK.
Amy Silverman is also a contributor to the Seleni Institute, a nonprofit mental health and wellness center providing clinical services, provider training, research funding and online information and support for women and mothers. A version of this article was originally published on the Seleni Institute website and is reprinted here with permission. Amy is the author of My Heart Can’t Even Believe It and you can follow her on Twitter @amysilvermanaz and Seleni @selenidotorg.
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