Columns

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…

I will never forget the evening in the mid-80s when my parents sat my brother, my sister, and me down for a critical conversation. They told us that my father had HIV. There was a very good chance he would die before my sister graduated…

I am a work-from-home mom, which means that I have two full-time positions as a “mom” and a “worker.” I am also a full-time carer to my husband with hemophilia. Thankfully, that position affords me several “leave credits” as my husband is not always injured. (Hopefully, the investment we’ve made…

I was with my son in a store recently when a coloring book for adults caught my eye. Ordinarily, I wouldn’t have given it a second glance. But what made this one special was the title on its cover: “The Road Not Taken.” I couldn’t resist opening the book.

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…

Many of us have been there. We’ve walked into a medical office in pain, seeking relief. As the doctor completes an evaluation, we are asked that common and potentially problematic question: “Please rate your pain on a scale of 1 to 10.” I hate pain…

There is never a time that I do not worry about my sons. “MacDonald the Older” is 23, but not a day goes by that I do not feel concern for his welfare. The phrase “don’t do anything stupid” keeps running through my head. Will I get a call from…

It’s quite difficult to focus on any sense of positivity when bleeds become more frequent. After a bleed-free streak that lasted over six months, it was easy to be disappointed when hemophilia made me feel vulnerable and weak again. It’s not all that bad, though. At times, being bedridden results…

Raising two sons with hemophilia has taught me to be flexible. I have learned that my best attempts to make plans can be thrown out the window in an instant at the onset of a bleed. Treating a bleed, going to the hospital, or accommodating a rigorous infusing schedule take…

Dear Hemophilia Parent, Today, I write to you. I am a child with hemophilia. I am taking the liberty of speaking on behalf of your child, who may be 2 days, 2 years, or 20 years old. First and foremost, you are awesome, and I…