I often wonder what my sons feel when they are in the middle of a bleeding episode. Both boys tell me that a bleed into a joint or muscle feels like needles constantly stabbing into the skin. The pain is unbearable and doesn’t let up until a medical clotting…

When my oldest son, Julian, started elementary school in 2001, I was encouraged to proceed with a 504 plan for his protection. Section 504 refers to the Rehabilitation Act of 1973 that guarantees the needs of students with disabilities are met in school. I was surprised when I…

Last week, my 16-year-old son, Caeleb, had a physical therapy session at 1 p.m. Unfortunately, the business of the day prevented us from visiting a museum. I felt disappointed that I didn’t hold up my end of the bargain regarding our plans for regular Friday “museum days” during…

When my husband, Jared, was younger, he was “the sick child.” With severe hemophilia B and a seizure disorder, he stood out like a sore thumb — or a rare gem. In any case, he was distinct as the child who required special accommodations at school or who missed…

Spring is in the air. With flowers blooming and birds chirping, this time of year is filled with new life and new beginnings. It’s also graduation season, a time that brings hope. Families share loved ones’ accomplishments and celebrate the end of one season and the beginning of the next.

I’m diligent about oral healthcare. I use an electric toothbrush, floss every day, and visit my dentist every three months. My reasons for this diligence are many, but mostly I am afraid of bleeding from dental procedures. Mouth and gum bleeding are common for those living with von Willebrand…

My youngest son continues to celebrate good health. The last time he suffered a joint bleed was in February 2014. A million years seem to have passed since the days of horrific bleeds and endless hospital visits. We used to know every nurse by name on the pediatric…

When I was younger, I often yearned for a fast-paced life. As a teenager, I rarely got to leave the house by myself. I coped by working on novels while locked away in my hot, stuffy bedroom. I loved writing in silence, but a greater part of me really wanted…

It amazes me how people with a bleeding disorder just go with the flow, living their lives and accepting their routines as normal. They forget that what they do on a regular basis is nothing short of phenomenal. A little boy self-infusing is an amazing sight to see.

As someone living with hemophilia B and epilepsy, my husband, Jared, has faced numerous health challenges throughout his life. From medical tests to hospitalizations, he’s endured his fair share of pain and discomfort. So when I recently confided in him about an unsettling taste lingering in my mouth…