I met with my mighty warrior’s new principal and school nurse last week. I took my presentation, and thanks to the Hemophilia Federation of America, I was ready to teach and answer questions. Most importantly, I wanted these individuals to feel at ease and not scared of my son.
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I’m looking at you, insurance companies and banks who won’t approve people who have a history of chronic illness or who were born with one — such as my husband, who has hemophilia. Of course, I am looking at this from a different perspective than the one businesses take. Then…
Part one in a series. I stood over my son’s hospital bed, waiting for the morphine to kick in and give him some relief. “MacDonald the Younger” continued to scream as the pain became unbearable. My boy had once described to me his experience of a bleeding…
I’ve always had a hard time coping with the fact that it’s quite difficult for me to find a decent source of income due to hemophilia and epilepsy. Although government and private institutions say that they are inclusive of persons with disabilities (PwDs), the reality is that discriminations against…
Caeleb is super excited about starting the seventh grade this week. He loves the new town we are living in and is hopeful for the school year. He wants to play basketball. Now, most people would say that is a normal thing for a 12-year-old boy to want…
It’s almost 11 in the morning. My husband Jared and I are lined up at the mall-based satellite branch of our national health insurance system. By now, the mall has been open just less than an hour, but there must be a hundred or so people already, impatiently awaiting their…
“MacDonald the Younger” is entering the seventh grade this year. His health is terrific, and for the first time in his life, there is very little fear about participating in physical education. He knows that contact sports are out of the question and he must wear his…
Having a bleeding disorder can be frightening. In the beginning, it is normal to think about the what-ifs when you’re unsure of what to expect. “What if I don’t know the signs and symptoms of a bleed? What if I never learn how to infuse my child? What…
Last week, just after our wedding, Jared got a shoulder bleed. Jared has severe hemophilia B, but he does not get bleeds often. When he does, it’s almost like a vacation from things, a sign that we need to take things more slowly. When the bleed clots,…
My eldest son was about to celebrate his ninth birthday. He had attended a fantastic performing arts camp. My wife and I bought Happy Meals for the entire ensemble in honor of “MacDonald the Elder’s” special day. We had an announcement that we couldn’t wait to share…
