When Special Needs Parenting Is Hard, Get Yourself a Clair

Every rare disease family needs a Clair. Jonah has had one since second grade. My friend Lauren is currently praying for one as she and her husband prepare to bring baby Izzy home from the hospital soon. Honestly, I’m not sure how we made it for seven years without one. When facing long and difficult days with more questions than answers, having a Clair is of the utmost importance.

The day Jonah was born with epidermolysis bullosa (to our complete shock), I instantly became unemployed. It wasn’t that my company let me go, but that I knew immediately I now had a different, full-time job. Maybe I wasn’t a nurse by trade (ew, needles), but all of a sudden, I was one by absolute necessity. I went from being a Spanish teacher turned office administrator to full-time medical not-so-professional.

And it was so exhausting. I was 27, had no formal training, wasn’t getting any sleep, and was making most of his care up as I went along, based on Googled articles, blog comments, and epidermolysis bullosa Facebook groups.

Finally, the summer after Jonah turned 7, a fellow special-needs mom dragged me out of my just-ignore-it-and-it’s-not-happening denial and inaction and took me all the places I needed to go and helped me fill out all the requisite paperwork to apply for CAP/C Medicaid. Shortly after, we were assigned a local pediatric nursing agency, and by late August of 2016, our life changed for the so-much better when we got our Clair.

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Clair has been Jonah’s longtime, ride-or-die nurse for going on seven years, and she’s family now. Not “like” family. Just family. She’s honestly one of the best things that’s ever happened to us. Jonah regularly refers to her as a “best friend” and misses her on weeks she’s on vacation. She almost gets more hugs than I do. (To be fair, she’s not telling him to do his required summer reading.)

When Jonah was younger, in addition to wound care, she’d play with him at recess when he couldn’t do what the other kids were doing or had to stay inside. She’d come up with a different or modified activity in PE if he couldn’t handle the activity the class was doing. She’d even sometimes pick up doughnuts on her way to school for his entire class. That’s Clair — winning hearts and fans for life wherever she goes.

She regularly includes Gideon, Jonah’s younger brother, when it’s an at-home day, finding games and activities for them to do to keep them busy. She recently taught them how to cook pizza rolls and pigs in blankets, just so Jonah had something to do since he couldn’t be outside in the heat.

She plays Uno, Connect Four, Guess Who, and even Pie Face (ew, Pie Face) to keep Jonah from being bored or feeling captive in the house. As he gets older, her love for him may look a little different based on his needs, but no matter the age or act of service, it’s clear that she loves my boy(s) with all her heart.

Nurse Clair, far right, after playing Pie Face with Jonah, left, and his brother, Gideon, in 2018. (Courtesy of Patrice Williams)

A few weeks ago, when she was on vacation, she bought me a beautiful potted plant for my screened-in porch. During the school year, she’ll randomly pick up cheese grits (mmm, cheese grits) for me from Biscuitville and hand them to me in the school drop-off line. Just because. When I can’t be with the boys, she regularly sends me pictures of their fun antics — field day, bowling, or just fun shenanigans around the house — so I can share in their joy.

And of course, all of that is in addition to wound care, medication administration, tube feedings, bandage cutting and prepping, dressing change, and cleanup. Clair regularly goes above and beyond in Jonah’s care and around our house, just to take extra stress off of me. I’m back to work full time now, and there is absolutely no way I could do it without her. She is one of only two people, outside of my husband, Matt, and me, who can do Jonah’s full dressing changes.

It was hard for me when he was young to apply for CAP/C, to get hooked up with a nursing agency, and to entrust my son’s care to someone else. But it was worth each and every headache, hardship, and piece of red tape to have what we have now. A Clair. Someone who loves and takes care of Jonah like he’s her very own. And in a world of unlucky, I still somehow feel like that boy has won the lottery.

Note: Epidermolysis Bullosa News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epidermolysis Bullosa News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.