Dear 2012 Self,
I remember you. You were utterly, purely delighted about being pregnant. You figured out creative ways to tell family and friends. You even started a Twitter feed for “Little Pierogi,” as your closest friends called the baby, posting cute updates like “My heartbeat is perfectly in time with ‘We Will Rock You.’ #NoCoincidence”
Then there was August 17.
You had just found out that you were having a boy. Your husband David had already started talking excitedly about Cub Scouts and soccer. You received a call at work from the OBGYN’s office. An intentionally perky voice informed you that your blood screenings had indicated an “elevated risk” of Down syndrome.
“What’s elevated?” you asked.
“Well, for your age it’s typically one in 1,000. With these results it’s 1 in 48.”
You hung up the phone in a fog. You called David and your mother in tears. To say this was unexpected was an understatement. You had had the “perfect” pregnancy so far—no throwing up, no weird cravings, no diabolical mood swings—and you, like any expectant mother, were certainly not “expecting” a child with Down syndrome.
That night was the first time you felt the baby kick.
The next week passed. Your blood was shipped off and tested. Results weren’t expected until after Labor Day weekend—the weekend of your family reunion, where second cousins you hadn’t seen in months would be excitedly asking all about the baby. What would you say?
And then there was August 30.
It was your first night of class for the fall term, a class you had been so excited to take. You almost didn’t go. The doctor called you that afternoon—the results had come back early, confirming that your Little Pierogi had three copies of his 21st chromosome. Your “elevated risk” had gone from 1 in 1,000 to 1 in 48… to 1 in 1.
Thoughts of nursery themes and diaper brands turned to questions of learning disabilities and life expectancy. All at once you were drowning in it, clinging to the unborn child you already loved and to the “normal” life you had assumed he would have. You felt bewildered and powerless, more deeply than you ever had in your life.
But here’s what happened next, Self.
You went to class that night. You pulled it together enough to sit in one of those molded plastic chairs and accept your classmates’ congratulations with a smile. You hoped that you had fixed your tear-streaked makeup enough that they wouldn’t think you were a weirdo.
That night his name came to you: “Joshua.” It wasn’t even on your list. But it was, simply, his.
The next day you and David drove to your mother’s house for the weekend. Did you still want to go to the reunion, they gently asked? Yes. Joshua was coming, and you wanted everyone to know it.
The reunion was full of congratulations and well-meaning questions. You told them his gender and his name. You didn’t mention Down syndrome yet, because you needed to wrap your head around it first. That was okay, Self. You knew you would get there.
And you did. With a humongous amount of love and support, you reclaimed the wonder and delight of expecting, not just any baby, but your Joshua. The Joshua who would be your firstborn, your amazing son, your “Goosie,” your “Honeybee,” your precious child. You were continually lifted up by your family, your friends, your church, amazing doctors and medical staff… and of course, the One who made Joshua—because He knew exactly how many chromosomes to give him.
And then there was January 3, 2013.
You delivered Joshua at 11:13am, at the same hospital where his daddy was born. He was a pink, squirming baby with dark hair and alert eyes. Joshua tried to put his feet down and stand up at the ripe old age of ten minutes. He was perfect. And in the more-than-two years since, Joshua has amazed you at every turn with his abilities, his curious and insightful mind, his kind spirit, and his sense of humor. He’s still perfect to you, and (spoiler alert) he always will be.
I want to tell you one more thing, Self. It’s about that word you heard back in August 2012: “Risk.” The first (wholly inappropriate) synonym for “risk” in my thesaurus is “danger.”
You were never in danger of having a child with Down syndrome.
The only “risk” you faced in August was that, unlike most parents, you got to know about one of Joshua’s chromosomes early. That knowledge led you down an unexpected journey of fear, focus, peace, and (ultimately) excitement. Thank God that you didn’t get stuck at “fear.”
Despite “risk” being a pretty standard medical term, I do not think it fits into a discussion of Down syndrome itself. Down syndrome carries increased risks of medical complications throughout one’s life, yes, but Down syndrome itself is not a danger, a threat, or even a loss. It is a uniqueness, a genetic mutation that represents both shared traits and endless individuality.
That’s why you should use the second synonym for “risk” in the thesaurus: “Possibility.” By that definition, Joshua’s life will be full of risks, in the best ways. Let him take them.
Let him try. Lift him up. Cheer him on. Tell him he can do it. Tell him he’s smart. And never forget what you told your family when you announced that Joshua would be born with Down syndrome:
“We plan to raise Joshua with limitless expectations and limitless love.”
A life without limits is full of risks—possibilities. And you wouldn’t want anything less for Joshua.