One issue that faces many families with chronic illnesses is lengthy hospitalizations. The entire household is affected by the disruption in schedule and routine. Life changes drastically for everyone involved. The child in the hospital must spend precious time away from regular activities and friends. Social interaction moves from…

So I get into the shower, and as I wash my hair, a memory comes flooding back to me. In a moment, I am standing face to face with it. My oldest son was 6 and struggling with a prophylactic infusion of recombinant factor VIII. The needle terrified him…

When my youngest son, Caeleb, was 5 years old, he participated in our church’s yearly Easter egg hunt. We divided the children into younger and older categories to help even the playing field. The smaller church members started first, gathering as many eggs as they could find. After the little…

We all enter history at a different point; our entry into the timeline of the world marks where the future of us begins as individuals and families. Sometimes, we accelerate into the on-ramp that launches us, and sometimes we bumpily move toward our mark. On our first date, my now-husband…

We are in the middle of January and some of the resolutions we promised to keep just a couple of weeks ago already seem to be fading away. Our intentions were wonderful and our commitment admirable. So what happened to our fortitude? Did something act as a roadblock…

Heroes come in all shapes and sizes. Sometimes, it is challenging to recognize the people in our lives who overcame overwhelming odds to remind us that life means more than merely accepting our condition. We must thrive, even when we face uncertain futures, painful treatments, or life-changing issues. Our champions,…

Note: This column describes the author’s own experiences with factor replacement therapy. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. It is 10:30 a.m. and I am having my blood drawn. I am doing a trough level test, which…

Many of us have names that represent legacies and traditions handed down from generations past. My mom named me after my grandfather’s brother who died when he was 11. I often think of him and wonder if I carried on the family name with pride. Would he have been…

Last week I hit a significant personal milestone. In order to keep myself mobile and healthy, I ride a recumbent indoor bike — a lot! I used to ride over 100 miles a week. Riding my bike has kept me and my joints healthy. It’s also helped…

Recently, I opened an email from a company inviting me to share my insights regarding bleeding disorders and how my family handles the struggles of chronic illness. Before my sons were born, I think I would’ve hit the delete button without giving a similar invitation a second thought. But…