Advocacy can be uncomfortable, but it’s necessary
A hemophilia mom must speak up for her children, even when it's difficult
I often put myself in uncomfortable situations, especially when the health and well-being of my sons are at risk. There was a time when my youngest son, Caeleb, 17, was in the hospital more than he was at home. During those years, dealing with his hemophilia and inhibitor became the center of my universe. Taking care of him was my No. 1 priority.
In those exceptionally stressful years, I became an overbearing hemo mom. I was never cruel or unkind; speaking up for my son was necessary. But it can be intimidating when the people who need prodding are doctors.
At one point, my husband and I took Caeleb to the Hemophilia and Thrombosis Center at the University of Colorado Anschutz Medical Campus for a second opinion. It was the best thing we ever did. The trick was to get our hemophilia treatment center in Albuquerque, New Mexico, to work with the center in Denver. While the physicians in Albuquerque had encouraged us to go to Denver, coming back with a plan for all to observe took work.
I remember one particular instance when Caeleb was hospitalized with an active bleed. The doctor was unsure how to treat Caeleb, who was getting worse.
I immediately asked, “Did you talk to Dr. Manco-Johnson in Denver?” They hadn’t, and I explained that being in touch with each other was the only way my son’s condition would improve.
I felt like a rabid dog that wouldn’t let go of a throat. But my insistence paid off, and the herding of cats between both institutions finally began to work.
Today, I find myself advocating differently. Caeleb has always had a 504 plan at school, but this year is different. Caeleb’s high school has him on a medical exception plan. So far it’s worked out well regarding his absences and occasional need for mobility assistance between classes.
However, Caeleb is now dealing with the aftermath of years and years of joint bleeding, which is causing him significant pain (hemophilic arthropathy). He’s missing a week at a time due to pain and is getting behind in school. Because of his extreme pain, catching up is almost impossible. The school administration is extremely supportive, but I’m still worried about Caeleb’s academic struggles.
My husband, Caeleb, and I are looking forward to a Zoom meeting with his principal to make a plan. The hope is that after my son’s upcoming ankle surgery, he will have less pain and will be able to get back to school.
I know many in the bleeding disorders community who have struggled for years with their child’s school. Unfortunately, administrations don’t always want to listen. School nurses are limited in what they can provide, and some teachers don’t want to be burdened by a student’s special needs.
If any parents out there are facing these struggles, here’s my advice: Don’t give up. Speak up for your child; don’t take no for an answer. Surround yourself with people who can help you voice your child’s needs.
Speaking up to those with medical and educational degrees can be intimidating. But no one knows a child better than their parent.
Never stop advocating.
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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