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…

There is a children’s picture book called “How Big is Baby?” The response to the baby is, “Baby is sooo big!” It is a great book as it empowers our children to know that they are a large part of life. We remind them that the love we…

There is a funny cartoon making the Facebook rounds. It shows two images, one for “normal parents” and the other for “medical field parents.” The normal parents’ side has a duck dressed as a doctor and a mama duck holding her baby up, saying, “He sneezed! Help…

Today, I received a phone call from my dad. He wanted to talk to me about safekeeping some of his finances, as he had been planning to travel to our hometown to sort out some property-related matters. Since my mom passed away in June, he has been focused on getting…

Dear Doctor,      We are concerned about the plan regarding our son’s treatment … The letter started out that way. Like many people, we lived in a culture that treated our doctors like gods. How dare we question anything! They had medical degrees, and we did not. Trust…

I have suffered from clinical depression most of my life. Five weeks after my eldest son was born over 22 years ago and diagnosed with hemophilia, my mom passed away. It was not a good time. I had planned on taking maternity leave until after Labor Day, but…

Before I share my story, I must make a disclaimer. The pastor/counselor side of me cannot continue without acknowledging that my story is not everyone else’s story. Some people in the bleeding disorders community do not have the support that many of us appreciate. I can’t believe how…

Wash your hair. Brush your teeth. Please, for the sake of the world, put on deodorant! Hundreds of times I have given those commands to my sons. Well, not so much “commands” as directives. I know I taught them basic hygiene at a young age, but why is it…

More than 700 medical experts, pharmaceutical executives, patient advocates, and others are expected to converge on Washington, D.C., next month for the 2018 NORD Rare Diseases & Orphan Products Breakthrough Summit. The Oct. 15-16 event, sponsored by the National Organization for Rare Diseases (NORD), takes place at the…

My son has his seventh port lodged on his left side, between two ribs, just below his chest. This one is his most successful port regarding the amount of time (two-plus years) and accessibility. When the doctor placed one of the earlier ports at “MacDonald the Younger’s”…