D-day is the worst.
Getting The Call—or sitting down with a somber-faced doctor—has to be one of the most sucker punch in the gut, knock-you-over experiences rating down there with—well, pretty much nothing.
My husband and I were fed in bits and pieces the answers to our daughter’s mysterious delayed baby milestones. Sadie didn’t make eye contact, she stared at ceiling fans, she didn’t babble or coo or sit up. We were three kids in, but we didn’t notice—love is blind—and having an infant in the house is exhausting. Then the pediatrician recommended we see a specialist toot sweet. There were tests followed by a summer-long series of results, delivered like a slow drip from a leaky faucet. Finally, we got The Call that the medical puzzle was complete, and could we please come in and meet with a geneticist? She would explain everything. In the meantime, we were warned: Avoid the Internet.
So we went in cold. The morning of our genetics appointment, I was ready with pen and pad to take copious notes. Instead, I sat and shook while a reasonably polite healthcare professional defined our daughter’s “abnormality,” an inverted duplicate of chromosome 15 in the q12 region.
I caught certain words: “autism,” “IQ of 50,” “facial dysmorphia,” and “high risk of seizures.” I remember clinging to one phrase in particular: “Not that I have a crystal ball…”
I certainly hoped not.
She sent us away with a stack of research about kids with duplicated 15. The accounts, cold and clinical, read like horror stories.
Before we left the hospital, we were directed to make a pit stop at the lab to draw blood from me and the spouse—something about who was the carrier of The Badness. An intuitive nurse saw my pale face and brought me a cup of apple juice. (Mind you, this was before they stuck a needle in my arm.)
We’d been through a d-day or two before, most notably the news that my husband’s father had bone cancer. I remembered how, in those first hours, the element of the unknown terrified us. The revelation wasn’t by any means his illness’ rock bottom (he survived, but it was rough going), but somehow it felt like it.
D-day feels like a sentencing. You’re whisked away to another world while a few onlookers gasp, and then you’re calmly given an orange jumpsuit, a number, a cot.
In the wake of Sadie’s d-day, I coped like the control freak who just got her I’m-in-charge license revoked, with research, endless phone calls, appointments all over town, epic insurance battles, and the search for the perfect therapists for broken babies. And shouldn’t we get a second opinion? And perhaps visit the chiropractor—or at least the health food store?
After the children were settled the evening of d-day, I remember sitting on our bed, feeling beat up and bruised. Words failed, but I managed to tell my husband: I’m so sad. That night, another word threaded itself through my troubled dreams: retarded… a schoolyard insult—now our lot in life.
Well-meaning folks said this was GOD’S PERFECT PLAN. One woman—with a straight face—suggested a Sadie exorcism. Countless others shared the Italy-Holland story. You know the one.
But things got better, or at least they felt better. We did what was necessary, placing one foot in front of the other, one day at a time. What else can you do? The shock wore off, especially after explaining the situation to inquiring minds—over and over again.
There are still moments of fresh grief: a baby dedication performed en masse at a large church, featuring a video of a kid going from crib to bounding onto a school bus to graduating high school to wedding day—emotionally manipulative for the parents of typical children, devastating for us. Then there was the Christmas Eve spent in the emergency room (age six) and Sadie’s first seizure (age seven). Because of Sadie’s biting habit, she was kicked out of extra super Saturday respite mornings and special needs summer camps (every single one). Just last fall, we weren’t able to include Sadie in an extended family trip. To Disney World. Leading up to departure, I ugly-cried while I got an oil change, while I folded clothes for my suitcase, while I wrote out instructions for the sitter.
But no matter what new terrible thing happens, we’re not starting from ground zero—la-la land, that magical place where everything always works out and awful only happens to other people.
It’s funny, how we’ve toughened but become more tender at the same time. Nothing surprises us, except the little things that surprise us every day. Sadie giving an unsolicited hug; Sadie saying “I love you;” Sadie singing Christmas carols starting in September.
We continue to check in with the same pediatrician who encouraged us 13 years ago to look into Sadie’s delays. She told me during one visit: “Focus on what Sadie can do, not what she can’t.”
Now that I wrote down.
And so sound advice and lots of help and the softening effects of time—and more moments of great beauty than I can count—have lessened the sting.
The anniversary of Sadie’s d-day, August 13, comes and goes. Some years I remember; some years I blessedly forget.