The following is a slightly lengthier version of my letter-to-self that was originally published at Dear Self About Down Syndrome, a heart-filling and wonderful blog of families’ stories about what they would tell their past selves when receiving their children’s Down syndrome diagnoses. I hope it touches you in some way — thanks for reading!
Dear 2012 Self,
I remember you. You were utterly, purely delighted about being pregnant. You figured out creative ways tell family and friends. You gulped your prenatal vitamins each night before bed and lay with your hand on your belly, imagining the little person you would raise. You even started a humorous Twitter account for “Little Pierogi,” as your closest friends called the baby, posting cute after-checkup updates like “My heartbeat is perfectly in time with ‘We Will Rock You.’ #NoCoincidence”
Then there was August 17.
You had just found out the day before that you were having a boy. Your husband David was already talking excitedly about Cub Scouts and soccer and camping trips. You were sitting in your office and received a call 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 started to shake as she explained things like “soft markers,” amniocentesis, and maternal blood tests. She pointed out that 1 in 48 was barely a 2% chance… but I think even then, deep down, you knew.
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.
You scheduled the “Verifi” blood test for the next week, rather than an amniocentesis test; 99.8% accuracy was good enough for you. You wiped your eyes, opened your office door, and counted the minutes until the weekend.
That night was the first time you felt the baby kick.
The next week passed. Your blood was shipped off to a lab in California 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 congratulating you and 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.
Questions of nursery themes, preschools, and sports teams turned on a dime, to questions of heart defects, learning disabilities, and life expectancy. All at once you were drowning in it, clinging to the unborn child you already loved and to the pleasant, successful, “normal” life you had assumed he would have. You doubted yourself. You felt fearful, 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 when it was your turn to introduce yourself, you gestured to your belly and accepted congratulations with a smile. You hoped that you had fixed your tear-streaked makeup enough that your classmates wouldn’t think you were a weirdo.
That night in bed, 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 family reunion, they gently asked? Yes. Joshua was coming, and you wanted everyone to know it.
You went to the reunion, full of hugs and 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 before you announced it to others. That was okay, Self. You knew you would get there.
And over the next few months, you did. With a humongous amount of love and support, you reclaimed the wonder and delight of expecting a baby—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 decorated a Peter Rabbit-themed nursery. You put up your Christmas tree. You turned in your term paper. You gulped your prenatal vitamins before bed and lay with your hand on your belly, imagining Joshua.
Through it all you were continually lifted up by your family, your friends, your church, the amazing staffs of Magee-Womens and the Down Syndrome Center… and of course, the One who made Joshua—you were pretty darn sure He knew exactly how many chromosomes to give him.
And then there was January 3, 2013.
You delivered Joshua Lyle at 11:13am, at the same hospital where his daddy was born. He was the picture of health—a pink, squirming baby with dark hair and alert eyes. Joshua tried to put his feet down on your belly and stand up at the ripe old age of ten minutes. He was perfect. And in the 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 on August 17, 2012: “Risk.” The first (wholly inappropriate) synonym for “risk” in my online thesaurus is “danger.”
You were never in danger of having a child with Down syndrome.
The only “risk” those tests back in August presented to you was that, unlike most parents, you got to know about one of Joshua’s chromosomes ahead of time. That knowledge led you down an unexpected journey of fear, focus, peace, and (ultimately) excitement. Thank God (no really, just stop right now and thank Him again) 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. It is a uniqueness, a genetic mutation that represents both shared traits and endless individuality.
That’s why you should take the second synonym for “risk” in the thesaurus: “Possibility.” By that definition, Joshua’s life will be full of risks, in the best ways possible.
Help him to grow. 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.