I’m Always Ready to Advocate for My Son With Hemophilia
A columnist describes the parental instinct to fight for a child's needs
I’ve never met a parent who enjoys the school drop-off. It’s frustrating when someone doesn’t follow protocol and stops without moving their vehicle to the front of the drop-off zone, thereby forcing everyone behind them to wait. And in my experience, the line forms at least half an hour before kids need to be dropped off or picked up. Many parents aren’t concerned with the drivers behind them. When the protocol is breached, drivers get exasperated.
My youngest son, Caeleb, is a junior in high school and not yet driving, so his father or I must endure the pain of the drop-off zone. In the early morning, Caeleb often has difficulty getting his ankle and knee to cooperate. Chronic pain from numerous joint bleeds often means my son needs a cane to walk.
The drop-off zone is quite far from Caeleb’s first-period class, which is in the back of the school, where student drivers park. One morning, despite my son’s plea that I was not supposed to drop him off in the back, I did. A security guard looked at me and shook his head.
I was guilty of breaking protocol. I was that mom.
In that moment, I realized it was time to step up and speak up for my son. I began to feel that ball of fire that starts in the bottom of my stomach rise into my heart and throat. The hair on the back of my neck began to tingle. I liken it to seeing the hair on a dog’s neck stand on end. Yet I had no reason to think I’d need to fight in order to advocate for Caeleb.
For years, I had my defenses up the way a boxer enters the ring. I was always prepared to fight for my sons, who both have hemophilia. Fighting is challenging when we have an excellent rapport with the educator or provider, but sometimes, the gloves must come out regardless.
This readiness to fight surprised me. Because Caeleb no longer endures regular bleeds or complications from his inhibitor, I hadn’t experienced it in several years.
That fiery feeling is one that most parents of children with bleeding disorders understand all too well. Parents of chronically ill children are experts in their child’s care. We may not have a medical degree or professional clinical training, but we have a keen understanding of our child’s condition and needs. And we’re often willing to fight to ensure those needs are met.
I emailed the principal and asked if we could meet to amend Caeleb’s 504 plan, allowing for his drop-off location to change. The principal made a medical accommodation, so we didn’t even need to add to the 504 plan. Problem solved.
The urge to advocate for a child can take over a parent. While I haven’t had to go to extreme lengths to advocate for Caeleb the way I did when he was younger, it’s good to know I still put the gloves on without hesitation.
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.
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