In the Twinkling of an Eye
— Joe MacDonald

My oldest son, Julian, caught me completely off guard recently. “Dad,” he said when I answered his call. “When the hematologist and her medical team entered the hospital room to tell you and Mom that I had hemophilia, what did you need for them to say to help you…

There is a moment in every person’s journey when they realize that their story is messy, complicated, and imperfect — and it holds more power than they ever imagined. Living with a bleeding disorder often means navigating a world that doesn’t fully understand what we face. We can feel isolated…

My youngest son, Caeleb, is home from college for spring break. He has no big trips to far-off hot spots planned. Instead, he’s in his room, enjoying the comfort of his bed. Our fur babies, Laggie and Hildie, enjoy spending time with their favorite human. Caeleb’s love for art and…

My youngest son, Caeleb, faced many health challenges with hemophilia during his early years. Throughout early elementary school, he missed more than 50 days a year. He’d go to school for a few days, and then a spontaneous internal joint bleed would take him out of school for…

I like to think my wife, Cazandra, and I did a decent job of teaching our two sons, Julian and Caeleb, how to manage their bleeding disorders. We drilled into their heads the importance of maintaining health insurance, as their hemophilia medications are too expensive to afford…

My son Caeleb called me last night, sounding stressed. “Dad, I have so much to do that I don’t know where to start,” my youngest son told me. “I have big projects due early next week in three of my classes, my knee is killing me, and I have…

A week ago, my oldest son, Julian, left home to begin rehearsals for a musical that could open doors to a long-term career. The show is a parody of the slasher movie “Saw.” Its producers hope to have him rehearse for a few weeks in San Antonio before sending him…

Second in a series. Read part one. Both of my sons were diagnosed with severe hemophilia A a few days after they were born. But that’s where their similarities end. As I shared last week, things went smoothly after we switched to a more flexible way of caring…

First in a series. When our sons were babies, my wife and I depended on our home-care company to infuse them with a clotting agent to combat the internal bleeding caused by their hemophilia. Infusions require a steady hand to hold the needle, insert it into a…

Most of the writing I see about mental health suggests that addressing the obstacles in your way is crucial to discovering joy. While it’s important to discuss the challenges we face in the bleeding disorders community, we must also remember to celebrate and give thanks when we conquer a mountain.

“Long-sleeved shirts,” I say to my younger son, Caeleb, as we run down the list of things he will need for his dorm room. “Check,” he replies. “How about pants, deodorant, toothbrush, wheelchair, cane, Hemlibra [emicizumab-kxwh]?” He confirms he has everything packed and ready to go. We continue packing,…

I often tell people that my mind is a dangerous neighborhood and that I should never venture into it alone. This usually gets a laugh, which the comic in me appreciates, as I often say it to lighten a difficult conversation. A little release of tension doesn’t hurt anyone. But…