The Roller-coaster Ride of Parenting a Child With a Bleeding Disorder
It's a crazy journey full of extreme ups and downs, says this columnist
I am not a fan of roller coasters. Dropping straight down in a car on a wooden track makes me feel like my heart has left my body. Why would anyone want to feel that way?
However, I have one exception: the Rock ‘n’ Roller Coaster Starring Aerosmith at Disney World. The speed, corkscrew turns, music, and neon signs depicting a superfast ride on the highway are enough to rev up a person’s heart rate.
Somehow being flipped upside down on the corkscrew turns isn’t a problem for me, so I voluntarily get on the ride. The thrill is intoxicating, so losing control for a bit feels like a reasonable trade-off.
If parenting is like riding a roller coaster, preparing for a baby to enter the family is like waiting in line. It’s a long, tiring line filled with subtle turns, yet the anticipation of what’s to come makes it worth the wait.
The coaster takes off when the baby arrives but suddenly switches tracks if they’re diagnosed with a rare condition. This was my experience with my sons, who both have hemophilia. The disorder leads to even more ups and downs, and the downs are significant. The ride never stops.
I remember holding my breath when my sons began to walk on their unsteady, chubby legs. Falling was inevitable, and catching them was only sometimes possible. But eventually they became steadier and raced to the next adventure.
As my children grew, each developmental stage brought new challenges. For example, new teeth meant gum bleeding, and running meant falling harder. Bleeds into joints caused damage and pain, which meant missed school days. Missing school meant less socialization with peers.
Fortunately, there are times when the ride slows down and people can catch their breath. These are the times when there is less bleeding and fewer missed school days for children with hemophilia. If we’re lucky, the slow ride coasts along for a long season.
Like parenting, having a bleeding disorder is a journey filled with ups and downs. A chronic health condition multiplies the joys and sorrows in life, and it’s up to parents to help their children be empowered when managing their condition.
When my children were little, I watched them cautiously as I sat behind them on the ride. I could still grab their hand, hold their shoulders for encouragement (and make sure they didn’t fly out of their seat), and always have my eyes on them. But things have changed.
My youngest son, Caeleb, is 16 years old and beginning to think about his future after high school. I realize that I’m no longer sitting in the car next to him or even behind him. Instead, I’m on the platform at the ride’s controls, sending people off to enjoy the thrill.
I’m glad to be on the platform. My son is enjoying the ride with every twist and turn. It’s a terrifying yet exhilarating experience. He is screaming at the top of his lungs, racing a hundred miles an hour. With each pass by the platform, he sees me confident, watching and cheering him on. He expects to see me when he whizzes by, feeling the comfort and calmness I bring him amid the craziness of a bleeding disorder.
It’s a great place to be.
Note: Hemophilia 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 another 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 Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.