Dear Friend, We live in a world where people want to help each other. I know you mean well, but there are a few things I need you to understand. When I tell you that my son is having a bleed and is in pain, don’t feel sorry for me.
Organizations such as the Hemophilia Federation of America and the National Hemophilia Foundation provide the bleeding disorder community with a wide array of resources, support, and platforms to connect with others. The National Hemophilia Foundation held its annual meeting recently, and I watched as friends in the…
Last year was difficult for my mighty warrior Caeleb. Moving to a new school in a town where everyone knows everyone is not something you wish for as an incoming seventh-grader. This year was better until I discovered that a couple of boys were bullying Caeleb and he did not…
My 13-year-old son, Caeleb, is a victim of bullying. This school year had a better start than the previous one until a couple of boys decided to pick on my mighty warrior. Name-calling and lies are hurtful, but at least words don’t leave marks on our bodies. But when…
My mighty warrior, Caeleb, has been in great health for the past five years. Five years of the occasional ear infection, strep throat, or allergies, but no bleeds. In the community where we’ve lived for the past 15 months, my son is seen as a regular eighth-grade boy. Many know…
My 13-year-old son Caeleb has had five years without experiencing any bleeding episodes. He developed an inhibitor at 11 months old, which is still active. Sometimes I find it hard to believe that he has been in such a good place with his health in recent years.
The start of a new school year is one of my favorite times. It smells of new pencils and crayons, lunchboxes, and my favorite, spiral notebooks. It’s a season of new beginnings, and when you have a child with hemophilia, you need the adults who will be teaching them…
Caregiving is hard work. When your child is chronically ill, caregiving goes beyond the expected parental duties. You have overwhelming responsibilities. There are doctor’s appointments, infusions, and treatments at home. There are hospital stays, lab work, and missed school days. Keeping up with your child’s medical condition can…
Over the past few months, my son Caeleb has complained of knee pain. “It’s not buzzy or achy, Mom,” he would say. “It just really hurts.” After his annual visit to a hemophilia treatment center this summer, his doctor recommended an MRI of Caeleb’s knee and ankle. Because…
It’s easy to look back and think about what one could have done differently. Handling a crisis with grace rather than anger, calling the doctor immediately instead of waiting, or keeping a diagnosis secret to avoid others’ judgment. We all make mistakes and, hopefully, we learn from them. Forgetting…
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