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Families who live with chronic illness have quickly learned to place trust in medical teams to determine the best course of action. If doctors and nurses suggest we quarantine, we may not like it, but we follow the guidelines, believing that the prescribed course of action will deliver the…

I used to be great about determining if my now 14-year-old son Caeleb was having a bleed. Identifying the symptoms of a joint bleed was second nature to me. Swelling of the joint, warmth to the touch, redness in the area, and pain are a few of the telltale signs…

Our hemophilia community has been here before. A novel virus — previously, it was HIV — hit the world, and our community was uncertain about how it would affect us. Patients were told to turn to doctors for help and guidance, but the information each patient received varied…

What’s new, month of May? Why hello there, extended coronavirus lockdown!   Our community quarantine was set to end on April 30. In the last few days of April, I felt so excited to go back to how life was before COVID-19. I missed going out, eating…

Losing family members is hard. Long-lived lives that come to an end, distance that prevents relatives from remaining close, and estrangements following family squabbles are a few ways to lose family members, and it can be devastating. Yet we manage to pick ourselves up and go on with our lives,…

My husband, Jared, and I recently talked about getting a dog. I’m excited and can’t wait. We spent an entire night flipping through pictures of various dog breeds. We finally managed to narrow down our selection to four possible types. At the top of the list is the Cavalier…

If I had to define my self-quarantine in one word, it would be peace. I live in a peaceful, small, rural town. My street is quiet and my porch has a wonderful view. Three of us are at home — my husband, one of my sons, and me. My…

In the past month, it has been hard for me to focus on hemophilia advocacy efforts, which normally are a burning passion. Disappointment over an opportunity to work more deeply with the hemophilia community that didn’t pan out and COVID-19 realities have me pulling back.

My husband is down with a bleed for the second time since the COVID-19 quarantine began.   It hasn’t even been a week since he recovered from his latest abdominal bleed. We were only starting to settle back into our usual routine. I was happy to…

“A River Runs Through It” is one of my favorite movies, but calling it that doesn’t conjure up just how deeply I feel about it. This movie is more than a favorite — it is like a cherished dream. With Robert Redford’s voice richly narrating the story of…