To the Mama Wondering What Life With Your Baby's Diagnosis Will Be Like

I love to stare into my son’s deep brown eyes as much as possible. He just recently began holding his head up, and he seems so different now — on his way to becoming a little boy, instead of the 8-month-old baby he is. His eyes have always held a special place for me; they have a calming look. I used to stare into his eyes as I rocked him in the squeaky, broken hospital glider each night during his three month hospitalization after birth.

Those days were chaotic and scary, with doctor after doctor coming in, running tests, handing down diagnoses, scheduling more tests and crushing hope. By the end of the day, all I wanted to do was snuggle the beautiful baby boy I’d created. I wanted to get lost in his eyes. I didn’t want to think about the longterm affects of his doctors’ words — the names of the syndromes they speculated he had and the many, many things wrong with so many of his organs left me crushed. What will his life be like? I wondered in the dark, stroking his tiny forehead.

Mama, those names and diagnoses and what they entail mean absolutely nothing. That’s what I would whisper in my own ear if I could. I would squeeze my shoulder and wipe the silent tears off my face and tell myself it doesn’t matter what the doctors say. Just get him healthy enough to go home. It gets better there. It gets better when you get away.

At home, he’s just Jackson. He’s just the little boy who’s presence was a total surprise on that August morning when I randomly took a pregnancy test. I was feeling a little off and about to start a medication with side effects. Just to be safe, I checked, and there was Jack, represented in a blue plus sign.

He loves exaggerated kissings sounds, and his laugh sounds like a verbal interpretation of sunshine. His sweet, shy and unassuming smile melts me. He adores his sister to pieces, giving her more giggles without her having to ask, while his father and I do back flips to even elicit a smirk.

He’s not his diagnosis, Mama. He’s Jackson. He’s not VACTERL or Moebius syndrome or Poland’s syndrome. He’s not his limb difference or his cystic kidney. Nothing in his medical chart defines him. He’s just your little boy and always will be. Nailing down a name does nothing but give the doctors a box to check. We keep thinking that pinning a description and label to him will change him somehow. It won’t. He doesn’t get better or worse; his who he is, and he has been from his first breath.

Don’t get bogged down in the labels and the scariness of it all. Get lost in those soulful brown eyes, and see the Jackson you created.

He’s beautiful.

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.

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