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…

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,…

The topic of fatherhood is often an awkward one to talk about with other men. To an extent, I have that same sort of apprehension as I always find myself asking the question, “Am I truly ready to take care of a child?” I imagine others may find it difficult…

Summer vacation flies by so quickly! We start preparing for the new school year by shopping for new clothes, school supplies, and shoes. However, prepping for school when your child has a bleeding disorder adds another aspect of preparedness to shoot for. Additional educational support for sports, childcare, or…

In an instant, things can change and redefine who we are. One minute life appears to take us down one road, and then we encounter something that brings us toward an entirely different destination. Whatever happens, we know that life will never be the same again, and our entire perspective…

Special education. Those two words strike fear into the hearts of many parents. “But my son doesn’t need special ed!” I know, because I was one of those moms. When my oldest son Julian, now 22, was in elementary school, the idea of a 504 plan — based…

Sometimes chronic illness holds us completely captive, and we lose moments due to pain or other complications. My family is no exception, as my youngest son experienced one year. He spent almost every holiday between October and February in the hospital. I helplessly stood by and watched my son lose…