When You Parent Differently Because Your Child Is Medically Fragile

Conversations you have with your friends about your kids are quite different when your child has a life-threatening illness. Today my friend, Amanda, and I talked about what the plan is for our boys. What is their purpose, and how much will they experience before their time is up? We talk about all the things we want to give them and pack into their lives because we don’t know what tomorrow will bring, and we want to make sure they’ve had full and amazing lives.

I believe parents in the medically fragile community breathe air a little differently, and we also plan our days differently. The things other parents might worry about — “Will they make the basketball team?” “Will they have friends at school?” Will they pass their spelling test?” — just aren’t high priorities in our lives.

Instead, we might mark our days with needle pokes, blood draws, medication schedules and therapy appointments, and we measure milestones with new hand coordination, new words, better motor skills and a better ability to concentrate. Planning a year from now, a month from now or a week from now isn’t always an option. We make and break plans constantly because our children’s health can turn on a dime. They stay home when others get to play because the germs and the allergens could be high that day.

Our children might live in a bubble so one day they can grow strong enough to take this world on full force. But our kids also get amazing opportunities. Nonprofits exist solely to make their days here more fun and have more memories. Organizations exist that make pillows, blankets, pajamas and care packages of toys and stuffed animals for their long stays at the hospital.

Success is measured when our kids can just be typical. When they’ve gotten through the day without choking, vomiting, passing out from low blood sugar or screaming in pain after recovering from surgery. When they can simply be outside playing with friends, or having a moment when they laugh and watch a movie. People might silently judge us and wonder why we’re so protective our of babies. They might think we do too much or shelter them too much. Therapists sometimes tell us they need less screen time and more play time. However, on days when breathing is really hard for the kids, or they are tired from medications or their system isn’t fighting that allergy the same as mine would, a movie or show might be the only way to keep them happy.

I believe we do things so much differently than the average parent. For example, I go to classes with parents of healthy children and feel like I’m painted in green because I can’t relate. I don’t know what it feels like to have only a pediatrician. I don’t know what it’s like to plan a play date without preparing for the worst possible outcome. My friends have become other parents in the community, doctors, nurses and therapists. Crying at appointments when I get bad news is standard, and high-fives and cheers when my child reaches the growth chart are common. You might also talk about what happens if your child dies and hear doctors talk about death.

kiss each morning a little differently when I wake up. Today I may get an amazing day at home, or I could end up in the hospital. Either way, I will make the best of what happens.

As parents of children who are medically fragile, we don’t always know what our kids’ plans are or what they will do. Planning for college could seem impossible when we don’t know if they’ll make it to high school. We hope they can find a way through this and deal with the pokes and needles. We hope the surgeries we opt for them are the right choice. We might always prepare for the worst-case scenario.

With that said, I believe we always know how blessed we are to have this time with these amazing miracles. We’re taught so much more than we ever expected. We inspire others on our journey and meet so many amazing people. I believe this journey is a blessing and a curse, and it’s a journey I can’t imagine not being on.

Follow this journey on Von’s Super Hero Facebook page.

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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