What I Wish I'd Known When My Baby Was Born the Size of My Hand

If I had the opportunity to turn back time, to give myself hope when I didn’t think there was any left, I’d do it in the blink of an eye. I’d stop the clock right before the doctors took away our tiny, different bundle and tell myself she’s OK. Yes, she’s small for 32 weeks — 1 pound, 12 ounces is unreal for that age — but she’s breathing on her own, and even though you can’t hear her, she’s crying. I would hug myself and keep saying, “Just a bump in the road.”

But mostly I’d sit down with myself and have a talk about her syndrome. Cornelia de Lange syndrome. Yes, it’s rare, and yes, there are many stories we’ve found and pictures that tell sad and difficult stories. That doesn’t have to be us. We know she can’t hear us, but she looks at us, and she snuggles when we hold her close. I would tell myself, “Don’t take for granted when she eats. G-Tube surgery at 9 months for a 5-pound baby is terrifying, but we make it through. Hearing aides and a prosthetic arm will give her opportunities to do more. Don’t let doctors and other parents get in your head; she will do everything you help and push her to do. She will love you no matter what. She doesn’t feel that her being different is your fault. She’s just a happy baby. You will learn to celebrate milestones other parents take for granted –sitting up alone, lifting her head during tummy time, even every small sound she makes. Your normal will never be the same, and so many people will not understand. But that little one will be your whole world.”

I’d make sure I understood that my daughter being born early, severely small with arm anomalies, deaf, and with a rare genetic syndrome was not a punishment. It’s an amazing adventure with a one-of-kind handmade personal angel. I’d let myself know that things can change and doctors aren’t always correct. A determined little girl will do whatever she wants, regardless of what people say she can’t do.

She’s still tiny — 18 months old and only 9 pounds — but she’s sitting up alone, trying to stand alone, taking steps with help, babbling like crazy. She has improved hearing in one ear. I would want myself to know that a diagnosis is just words — words that don’t and will not define who my daughter is and will be.

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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