Columns

I recently took a photo of my husband, Jared, looking after our daughter, Cittie. They were both snuggled up on a foam mattress laid out in front of the television. It was a sweet photo, but their perfect smiles and adorable cuddles obscured a dark reality: At the time, Jared…

“L’hitraot” is a word I learned while living in Israel. It is a gentle way to say goodbye, essentially meaning “see you later.” I am transitioning to a new job at a nonprofit organization, and this will be my last column here at Hemophilia News Today. It has been an…

I sit waiting for my youngest son to complete an MRI of his right ankle. He has been overwhelmed with pain from constant breakthrough bleeding episodes. For a while, recombinant factor VIII was working to treat his hemophilia and we were euphoric, but we soon learned that internal…

I use a handicapped placard for my youngest son, Caeleb, who has hemophilia and deals with complications from the clotting factor used to treat his illness, which causes him to have pain. Caeleb, 15, participates in his school’s marching band and practices after school four days a week. At the end…

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…

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…