A back-to-school message from a cystic fibrosis parent

Dear fellow parents,

After a long summer, it’s finally time to send our kids back to school. Trust me, I’m just as excited as you to have some quiet in my house. But I’m also incredibly nervous. While returning to school is a milestone for every parent, for me, it’s a particularly huge one.

School is the first environment outside our home where our 4-year-old daughter spends time on a regular basis. It has been my full-time job to protect Claire from germs, viruses, and bacteria since her diagnosis with cystic fibrosis (CF), but sending her to school means letting go of my control over her safety.

I have to confront deep fears and place my trust in others who don’t know the intricacies of cystic fibrosis as well as I do. I know that every day presents a new opportunity for viruses or bacteria to invade her body. During drop-off, I constantly find myself listening for a cough nearby or scanning the crowd for a runny nose. Yet, I still take this risk because I know Claire benefits academically and socially from attending school.

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I don’t want her to live in a bubble. Like any parent, I want my daughter to experience the world and all it has to offer. But CF makes it difficult for her to do so safely. We have to take extra precautions to keep her healthy. So if you see me frantically sanitizing her hands or steering clear of your coughing child, know that it’s not personal, and I’m not trying to be rude.

We try to avoid illness as much as possible because of the repercussions it can bring. For Claire, a cold is never simple or quick. If our daughter gets sick, we have to increase the frequency of her breathing treatments to every three hours, which gets in the way of her living a normal life.

I know many other parents don’t have to think this way. I don’t expect those with typical, healthy children to fully understand my perspective because, frankly, there’s no way they can.

What I do ask from fellow parents, on behalf of all parents with chronically ill children, is that you respect my perspective and don’t judge. Try to understand that this is a hard path to walk, and we need everyone’s help to ensure our daughter can attend school.

What I want more than anything is for Claire to be included. CF brings with it a lot of boundaries and limitations. When Claire was in the NICU, I wondered if she’d ever go to school and have friends. Seeing it become a reality has truly been one of the most amazing experiences as her parent.

We are so excited to bring more families and friends into Claire’s life through school. We hope they’ll not only get to know her, but be willing to protect her as well.

Sincerely,

A CF mom

Note: Cystic Fibrosis News Today 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 Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.