The Secret I'm No Longer Keeping About My Medically Fragile Daughter

I have a secret. We all have them. Sometimes they get discovered, and sometimes they stay secrets. I’ve never been good at keeping them. Yet, there are aspects of my child’s life and diagnosis that people aren’t always comfortable discussing. 

I don’t blame them. When I think about our secret I always cringe a bit myself. Squirm and change the topic fast. But when you live day in and day out with a medically fragile kid, you come to a point where you can’t ignore the elephant that shares the same house with you.  

Our secret? My daughter has a shortened lifespan. By the estimations of the medical community at large, she will not make it to adulthood. When she was born to her birth mother at 24 weeks, she endured a stage three brain bleed, which left her with a long list of medical conditions.  

When we started the adoption process, we knew our daughter had a lot of strikes against her. We knew there were issues. Three days after we brought her home, we ended up in the hospital.

It was here that I heard big, scary words. Talking to people about her multiple issues was hard. When we came to the delicate topic of her longevity, people wouldn’t know what to say or do. Death is uncomfortable. We’re all going to die, but it’s usually not the general topic of discussion around our coffee tables and water coolers. So we hid it, and it became our secret.

It was painful to keep and grew harder to hide. Every sickness, every hospital visit, people would ask questions, and I would say it was fine when really it wasn’t. 

Then, slowly things began to change. I met an amazing group of women — women who were going through the same roller coaster I’d stepped onto. No subject was off limits, and nothing was too hard to discuss. I let my secret go. Support and unconditional love surrounded me. 

I learned not to look out the window for the grim reaper. We celebrate life and live every day to the fullest. Because we don’t know what the future holds. No one does. Every day is precious, and every second is a chance to make a memory. My family and I will live and celebrate every moment and embrace what life brings our way.

The Mighty is asking its readers the following: What’s one secret about your or your loved one’s disability and/or disease that no one talks about? 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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