Why Protecting My Medically Fragile Child May Not Have Been the Right Thing

The toughest paradox I’ve faced over the last six years as the parent of a medically complex child is whether to protect my child or let her live her life. I’ve struggled for a long, long time with the motherly instinct to shield her from all harm — meaning germs, sadness, injury and disappointment. By doing so, sure, I’ve done my share of protecting. But I’m not so sure I’ve done the right thing.

I vividly remember the night before my daughter Olivia’s first open-heart surgery when she was a tiny 1-week-old infant. I tried as hard as I could to stay awake that night — all night — knowing surgery was looming at dawn. I didn’t want to forget a single second of her “being.” I breathed in her smell, watched her slumbering movements and prayed she would open her eyes to see me.

She had been in a medically induced coma up until that point, biding the time until she had the strength and endurance to face this gargantuan of a surgery, and I had only seen her eyes a handful of times. I, too, had been living in the hospital for a week by this time and was quickly introduced to the exhaustion that comes along with noisy machines, beeping monitors, endless visits from doctors/nurses/hospital personnel and worrisome, sleepless nights. 

On this night, I tried to consume myself with my daughter to avoid ever forgetting a single second of it, just in case the unfathomable happened. I didn’t let myself go “there,” yet I couldn’t escape it, either.

Try as I might, I surrendered to sleep sometime in the early morning hours. But before doing so, I did this (and I’ve never told a soul but my husband): I whispered to Olivia all of the things we would do when she survived this surgery and came home. I vowed to play with her every single day, to take her to the park, to the beach, to go on walks and bike rides, to take vacations, to make the most out of everyday things and to love her with every ounce of my being. If only she would stay strong for me, for us, and survive this surgery. And guess what? She did.

My incessant quest to keep her safe began from that day forward. I prohibited sick visitors or those without flu shots from coming over, I kept her home from preschool each and every time she had so much as a sniffle and I kept her away from her peers for fear of catching an infection. I also struggled last year with the decision to send her to public school; although, in the end, I chose to let her attend. I knew the social and emotional skills she was lacking would be much improved through school, much more than any amount of therapy ever could. So I sent my medically complex little girl off to kindergarten, hoped for the best and tried to bury my worries.

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Last week I surprised Olivia by joining her for lunch at school. I sat back and watched her for a while — just watched her interact with friends. I saw how much she beamed at them, and how she was loving and living every single moment. She was truly and utterly happier than I’d ever seen her. In that brief visit, I felt something I haven’t since she was born. I felt life begin to creep back in. For Olivia. For us. And it’s changed me.

I know now that it wasn’t life I’ve been protecting her from all along but my own fears. The same fears I had that night long ago before her first surgery — of losing her. By doing so, I’ve been doing a disservice to this little girl. I haven’t been fulfilling those promises I made to her so long ago. Instead, I’ve been taking life away. And quite frankly, I’ve taken away her ability to be a child.

Olivia, I vow never to shield you from the beauty of life. I vow to give you opportunities that will make you laugh that contagious laugh of yours, light up your big brown eyes, create once-in-a-lifetime memories and make you smile that beautiful, toothless smile of yours. I vow to let you live the life you have fought so hard for.

Because without living, what would we all have?

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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