“We are uncomfortable with you around and struggle to be in your presence. We find that you talk too much and are self-centered. When you hosted dinner, you made us eat in an insulting location we did not like,” the person said. Defending myself, I said, “I am so sorry,…
Search results for:
A voice memo appeared in a text from one of my hemophilia mom friends. We usually see each other at national meetings or on social media, but we don’t talk much outside of that. She’s one of the coolest women I know, so I always wonder why we don’t…
Letting a doctor go can feel like a radical act, especially when, like me, you live with a lifelong bleeding disorder. Many of us are taught, implicitly or explicitly, to be grateful for any care we receive, to avoid rocking the boat, and to trust that the person with the…
“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,…
Cazandra Campos-MacDonald, a parent of two sons with severe hemophilia, reflects on preparing early for the transition to adult care, the challenges of letting go, and the growth that comes with independence. Read her column here.
Last year was a year of conferences for me — at least 10 by my count. It still amazes me that, in the hemophilia community, thousands of individuals and families are able to travel and attend these events at little or no cost, thanks to the support of event…
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…
When people learn that their loved one has hemophilia, they often jump straight to a mental checklist of risks: bleeding, injuries, factor, emergency plans. Safety becomes the headline. Over time, it can become the lens through which every choice is evaluated. But for many people…
I love making quilts. Some people wonder why anyone would buy new fabric just to cut it up and sew it back together. It might sound odd, but for quilters like me, creating something by hand brings comfort, joy, and satisfaction. There is a rule when preparing to make…
The first of my four alarms sounds at 6 a.m. Groggy, I roll over to turn it off, knowing I have 15 minutes until the next one goes off. I am a night owl and often let time slip away, crawling into bed after midnight. The next morning, I pay…