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I am the first person to insist that a diagnosis does not define my children. In my home, we never call our children hemophiliacs, rather we focus on the fact that they are human beings who have hemophilia. I never want my sons to think that their whole person is…

School is about to start — at least that’s the plan as of this week. With such havoc in our world, plans for students to return to school are ever-changing. My 14-year-old son, Caeleb, will enter high school this fall. His school has a plan for three groups of…

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…

Our baby girl, Cittie, is 18 months old. She’s feisty and curious about the world around her. Currently, her favorite words are “up,” “open,” and “close.” She likes being carried so she can observe things from an adult vantage point. She also wants to touch and tinker with every object…

At times I struggle with documenting my journey as a caregiver for a loved one with a bleeding disorder. I can’t offer medical advice because I am not an expert. The most I can do is share my experiences and hope that something I write might speak to someone…

The past few months have been filled with change. My family and I moved from Texas back to New Mexico, my husband and I started new jobs, and our youngest son, Caeleb, begins high school in a few weeks. Our home is finally getting into a new rhythm and…

When my husband, Jared, and I started dating, I was aware that he has hemophilia B and epilepsy. Not long after that, someone close to me gave me a gratuitous warning about dating someone with chronic illness. They told me I would face more challenges and…

Two weeks ago, my family moved back to New Mexico. Today, I find myself attempting to bring order to my office. I started matching books with the subject matter and made sure that each volume found its right place on my bookshelves. I held my Doctoral thesis in my…

I am a sucker for routine. Spontaneity does not come easily to me because I do not like surprises. I missed routine when my now 14-year-old son, Caeleb, was younger and hemophilia seemed to be the ever-present, unwanted guest in our lives. I joked that I missed boring…

Last week, I met a new local hematologist. He is not my main hemophilia doctor, but with my hemophilia treatment center eight hours away, it helps to have a local connection. He is a hematologist/oncologist who specializes in cancer treatment and knows very little about hemophilia.