In the Twinkling of an Eye
— Joe MacDonald

Fresh off the heels of the National Hemophilia Foundation’s virtual symposium earlier this month, I just attended another online conference hosted by the Hemophilia Federation of America. One thing that drew me to this event was the number of sessions dealing with mental health, for both caregivers and…

I will never forget the first time the Hemophilia Federation of America asked me to facilitate a discussion group for parents of the newly diagnosed, at the federation’s annual symposium. About 30 parents attended, each with their own issues regarding their children. I sat in my chair and quickly…

Despite the challenges associated with holding a large conference online, the National Hemophilia Foundation did a fantastic job at this year’s Bleeding Disorders Conference by virtually presenting participants with essential information about treatments and future methods of living with bleeding disorders. Nothing will replace great friends getting together…

I remember the first time I put my hand in your hand. You seemed to smile out of a sense of familiarity. You knew me in a way that knocked me to my knees. Your tiny hand filled my palm with delicate fingers and fresh new strength. Your touch seemed…

Saturday afternoon marked the opening of the virtual edition of the National Hemophilia Foundation’s Bleeding Disorders Conference. I immediately missed the in-person experience, meeting old friends, walking through the exhibits, and other benefits that come with traveling to another city. But I like the opportunity to hear great thinkers in…

As we continue to practice social distancing, I find it exceedingly difficult to stay connected to brothers and sisters in the hemophilia community. I gain strength and hope from dear friends who struggle with medical issues like mine. Why then do I find it hard to take advantage of…

I am the first person to insist that a diagnosis does not define my children. In my home, we never call our children hemophiliacs, rather we focus on the fact that they are human beings who have hemophilia. I never want my sons to think that their whole person is…

At times I struggle with documenting my journey as a caregiver for a loved one with a bleeding disorder. I can’t offer medical advice because I am not an expert. The most I can do is share my experiences and hope that something I write might speak to someone…

Two weeks ago, my family moved back to New Mexico. Today, I find myself attempting to bring order to my office. I started matching books with the subject matter and made sure that each volume found its right place on my bookshelves. I held my Doctoral thesis in my…

I entered my 3-month-old son’s room and stared at him as he peacefully slept in his cradle. Streetlights shined through the window into the darkened room. I glanced out at a serene view that reminded me that everyone uses nighttime to rest. I turned to my baby boy, unsure of…

If there is one word in the English language that drives me batty, it’s “chaos.” It implies a lack of control and an inability to stand on firm ground. It isn’t pleasant to be forced into a world that lacks any sense of stability. I must find a way to…

As caregivers of loved ones managing chronic illness, we face questions that, when first heard, knock us to our knees. For my family, it was not so much a question as a statement. When “MacDonald the Older” was 4 years old, we set up to infuse through his port-a-cath…