Columns

When I was a young girl, I sat next to my father while he self-infused. I handed him his supplies — butterfly needles, syringes, alcohol, cotton, and medical tape — as he needed them. I watched every step. The factor was mixed, then drawn into…

I celebrated Mother’s Day a week ago at home with my family. We held a sale at our Instagram shop for the family jewelry business and sold several Mother’s Day goodies. It was a relief that this sale was successful. Having enough resources for our family is enough of a…

I have celebrated Mother’s Day, as a mom, for 24 years. In those years I’ve experienced tremendous joy and insurmountable grief. Some of my deepest grief came right after both of my sons were born. Instead of a time filled with happiness, a cloud of despair loomed as they were…

Spoiler alert: This column shares brief plot details from the Netflix series “Atypical.” Caregiver fatigue is real. It’s normal, and people should talk about it. Lately, my husband and I have been watching the Netflix series “Atypical,” which focuses on the life of an autistic teenager,…

I first noticed the survey as I headed down the street while the sun was rising last Sunday morning. A rock painted bright orange with the words “poll of the day” anchored a sheet protector. Inside, a green index card asked: “Would you rather have a lifetime subscription to Netflix…

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,…