My husband, Jared, and I are two weeks into our self-sufficiency journey. Just last week, our family moved into a rented condo. We spent some time and money to fix up the place and repair damages. So far, Jared’s handyman skills have improved a great deal. He likes that…
Columns
In June, my firstborn son, affectionally nicknamed MacDonald the Older, will turn 26 years old. Conversations include career plans after his major milestone. He hopes to sing on Broadway and continues to get better with age. A vocalist myself, I hear his progress and believe he has an excellent…
Hospitalizations are disruptive. When someone has to go the hospital, day-to-day routines take a back seat. Being at the hospital becomes the top priority and life must move around the illness. But when a patient and family experience constant hospitalizations, this becomes their normal routine. My youngest son, Caeleb,…
Recently, my husband, Jared, and I decided to move into a new home. We’d been contemplating the idea since our daughter, Cittie, was born almost three years ago. Yet somehow, financial constraints always held us back. We wanted to be full-time parents to Cittie, at least during her formative…
This week, we celebrate Balloon Fiesta in Albuquerque, New Mexico. Nearly 600 hot air balloons fly overhead while we stand in the grass, looking up at the beautiful sight. I cannot help but think back to when my youngest son was 8 years old and unable to walk. We…
Factor and supplies used to take over my kitchen. Boxes of syringes, Betadine swabs, dressing kits, monthly Sharps containers, and box upon box of factor arrived and needed to be organized and put away. The number of items was overwhelming. Sometimes the boxes would stay unopened for a…
My husband, Jared, and I are on the cusp of making a major life decision. This decision had always been part of our long-term plan. We just didn’t expect it to happen so soon. Still, one event led to another, and we found ourselves standing before the option we are…
No one likes to feel out of control of their body, but those of us affected by chronic illness know that when the disease rears its ugly head, we may struggle to find a sense of power. As the father of two sons with hemophilia, I understand how the storms…
Is it starting again? Is hemophilia about to take over my world? For more than seven years, my family has enjoyed life with hemophilia in the background. My youngest son, Caeleb, is 15 and has severe hemophilia A with an inhibitor. His early years were filled with complications that led…
I’ve been busy setting up my personal website and blog lately. So far, chronic illness and disability are two of my major themes. My husband, Jared, has hemophilia and a seizure disorder, and I see him face the challenges of being disabled every day. His conditions affect our marriage, family,…
Recent Posts
- In sharing our rare disease stories, our collective light shines brighter
- New test may help fine tune care for those with acquired hemophilia A
- Mild hemophilia patients should monitor their clotting risk after surgery
- Rethinking care expectations in an adult partnership
- Growing up before treatments for hemophilia were safe, part 1