I Will Never Let My Daughter's Disability Limit Her Life

Because Brenna's skin is hyper-susceptible to infections, family vacations at a bacteria-filled lake seemed impossible.

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As we tended to our newborn daughter at the hospital and talked to the doctors and nurses about her, we didn't imagine a world of possibilities. Instead, her world felt like a list of limitations that grew longer and longer as the hours passed after her birth.

Our daughter Brenna was diagnosed at birth with a rare and severe skin disorder called Harlequin Ichthyosis – a condition that was almost always fatal in the past but now offers much more hope of survival due to medical advances. It's a chronic condition with no cure. As my husband Evan and I, overwhelmed and emotional, continued to learn more about this disorder, we initially felt like the expectations we had for our growing family were doors closing in our faces.

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Because Brenna's skin is hyper-susceptible to infections, family vacations at a bacteria-filled lake seemed impossible. Because she cannot sweat, it also seemed impossible to think about hot summer afternoons watching her brother Connor on the sports fields. Because her skin can be very tight and restrictive, it felt like any future of sports, dance, or gymnastics were being erased.

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We faced a lot of unknowns in the first few months — and even years — of Brenna's life, but somewhere along the way, Evan and I made a choice: We could allow this severe disorder to hold us back and let the fear of what might happen stop us from trying new things with Brenna...

Or we could push the limits.

Instead of saying "she can't do that because of her skin," we decided our default answer would be "Let's try it. Let's figure out how to make this work."

As her mother, I know that my role often feels more protective. I am very aware that many experiences are much harder on me than on her because I tend to want to protect and defend my daughter rather than potentially allowing her to get hurt or sick.

But I also know it is crucial for Brenna's confidence and self-assurance to choose her own path and her own reactions to what life brings, instead of taking her cue from me and my reactions. One of the greatest gifts we can give our children — disabled or not — is the opportunity to chase their passions and pursue their interests, even if those attempts end in what looks like failure.

What we have discovered in just four short years is that Brenna is able to do so much more than she can't. We have been able to do so much more as a family than we ever thought possible as we sat in the NICU pod struggling with her chronic diagnosis.

Instead of saying "she can't do that because of her skin," we decided to say, "Let's try it. Let's figure out how to make this work."

Brenna's condition certainly has and will continue to have a huge effect on our lives. But we are discovering that it is only as limiting and defining as we want it to be.

The other day, Brenna slid out of her car seat and slowly crawled out of our minivan. In an attempt to save time, I started to pull her out and close the door.

"No, I can do it myself!" she stopped me. I almost informed her that she wasn't tall enough to reach the automatic button to close to sliding door, but I held back, waited, and watched.

Brenna balanced herself on the floorboard of the van, stretched as far as she could and barely pushed the button, before sliding back out as the door lurched forward to close.

We remind ourselves every day not to put unnecessary limitations on our daughter so that she will not put unnecessary limitations on herself. And, because of this, we hope we will hear those empowering words much more often in the future: "I can do it myself!"

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