Unique and Undiagnosable

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 are 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 very 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 am 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 8:00am and nursed every three hours on the clock now sets her own schedule. Somedays, 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 everyday and marvel at her rare beauty. Gorgeous and breathtaking from the moment she was born one December morning.

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9 thoughts on “Unique and Undiagnosable

  1. Really beautiful Lyndse.

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  2. ahdavey says:

    Thank you for this beautiful post. Although we knew our son was “special” a little earlier (a few days before he was born), I felt (and feel) many of those same feelings. God bless.

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  3. […] Adelaide’s trees are always decorated with deep clearance Christmas leftovers, supplies from around the house, and homemade ornaments. It’s a fun challenge to see what we can come up with to celebrate our little December Baby. […]

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  4. […] our family, while I semi-successfully held back tears. We already knew there was no cure, but Adelaide looked horrible on paper. And even though we knew going into that second MRI that no surgery could fix her brain, there is […]

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  5. […] the place. I can and do write about poop. Which I will then follow up with a poignant post about raising a child with a rare disease. And then I will load a bunch of photos of a cloth diapered baby. I write what I feel like writing […]

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  6. […] and the spiral ends once you get a diagnosis. And it’s almost worse when you’re in the undiagnosed club. Too many variables. They forget that any child at anytime has the potential for glitches in the […]

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  7. evendley says:

    This really blessed me. Here I am in the NICU with my first grandchild and a new vocabulary word colpocephally. I’ve worked in the special needs all my adult life. But this blog brought more cheer and real stuff than an hour of reading neurological a abstracts. Bless you!

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