When my newborn daughter was diagnosed with Down syndrome, I had no idea what to expect. I was sure of just one thing: My life was over. Ditto for my husband and our older daughter. I was completely lost, and it took me years to find my way. 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 your life – and mine – 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 AM, 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."
Drunk on your painkiller cocktail, you won't really react on the outside. But inside you will begin to scream bloody murder. "NO WAY. NO WAY IS THIS HAPPENING, NOT TO US. NOT TO ME."
You close your eyes, willing the whole thing to go away, 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 what you are thinking: You are thinking that you ruined your family, that you screwed things up for Annabelle, and that Sophie will have a terrible life. That you are all doomed.
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: Down syndrome is the most common genetic birth defect. No one knows exactly why it happens, but in about 1 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.
She will most certainly be intellectually disabled, although the extent of it won't be known for quite a while. And by the way, people still say "mentally retarded" in 2003. You have said it, but you will stop that soon. And 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, a world where prenatal diagnosis means more terminations of people like her.
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 okay. 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 even potty train a few days before kindergarten starts (whew). 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 that you've got this. And that somehow, everything is going to be more than ok.