What I See When I Look at My Undiagnosed Daughter

Adelaide is unique. Of course, every child is unique. We learn this in kindergarten as we cut folded-up pieces of paper into snowflakes and listen to a story about how we’re all different and special and bring our own flare to the world. But Adelaide is heartbreakingly unique.

My pregnancy was normal. Our ultrasounds were textbook. Her scheduled December C-section was uneventful. Her hospital tests were unremarkable. She was a quiet, happy baby who latched her first feed and did everything according to schedule. There were a few hiccups along the way, but she was a sweet, content baby. She was slower than her big brother with milestones, but that was just her laid-back personality. My two little snowflakes. But, almost overnight, we went from normal to taking-her-time-with-things to there-is-something-very-wrong.

The whole world stops when you start hearing words. Frightening words. Non-verbal. Bilateral frontal polymicrogyria. Wheelchair. Mega cisterna magna. Hypotonia. Physical therapy. Thinning corpus callosum. Drool bibs. Unknown life expectancy. Colpocephaly. Seizures. No cure. Hearing loss. Flattened pituitary. Leg braces. Vision deficit.

And you see a snowflake cut-out hanging up in a children’s hospital and think, “She was supposed to be unique like a snowflake. Not the kind of unique that makes doctors say they have no answers, that they have never seen another child with her mix of brain abnormalities. Mix. Like a blizzard. I’m in a blizzard now. Lord, please lead the way.”

More than two years after her first MRI and genetic tests, Adelaide still can’t be diagnosed. There is no hyphenated name for whatever happened to her DNA. There are no indicators of future progress. She is completely unique. Her snowflake has an abnormal pattern. Her brain has an abnormal pattern.

She does everything on her own timeline. This child who came into the world at exactly 8 a.m. and nursed every three hours on the clock now sets her own schedule. Some days, she defies what doctors thought possible. Other days, she makes no progress at all.

A unique mix. Drifting where she pleases and causing me to stop in my tracks every day and marvel at her rare beauty. Gorgeous and breathtaking from the moment she was born one December morning.

Read more from this journey on Little House in the City.

For all of January, The Mighty is asking its readers this question: If you could go back to the day you (or a loved one) got a diagnosis, what would you tell yourself? If you’d like to participate, please send a blog post to community@themighty.com. Please  include a photo for the piece, a photo of yourself and 1-2 sentence bio.

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.