I vividly remember attending my first bleeding disorder conference in 2008. It was overwhelming. The exhibits had products and services that my son would need, and the workshops and topics were new and very unfamiliar. The attendants seemed like they were at a family reunion! How did they…
Hemophilia 24/7 - a Column by Cazandra Campos-MacDonald
At this time of the year, I like to clean. Not just dusting and mopping, but also purging my home of unnecessary items. Unworn clothes, worn-out shoes, and overwhelming stacks of papers and magazines. The other important area that needs a thorough inventory is my home medical supply…
The Thanksgiving holiday is upon us. It’s my favorite time of year. Family feasts, playing games, going to the movies, and watching football are some of the traditions that many of us hold dear. One Thanksgiving tradition my family keeps is that each person at the dinner table…
PTSD Will Not Define Us
My seventh-grade son, Caeleb, is the new kid in a small, rural community where everyone has grown up together, so it’s hard to fit in and make friends. He comes home most days with a tale of mistreatment or insensitive comments directed at him. It breaks my heart,…
Perhaps the most important lesson we learn at school is to keep our hands and feet to ourselves. I have thought about this rule every time my sons have complained about an incident at school. I remember my kindergarten teacher, Miss Paula, teaching my class that lesson. Best.
My mighty warrior Caeleb is 12 years old and officially an inch taller than me. Every day he stands next to me, checking to see if that inch has stretched. I watch him from my office window, playing with his friends on the street; amazingly, he is turning…
Invisibility Is Not the Easy Way
I loved watching the Harry Potter movies with my sons, especially the earlier ones where Harry, Ron, and Hermione were much younger. The magic and wonder of wizards and Quidditch were fun to imagine. I especially liked Harry’s invisibility cloak. “Mom,” my son said, “wouldn’t that be cool?”…
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…
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…
Lessons Learned, the Hard Way
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…
Recent Posts
- Holy Week brought back memories of the power of kindness
- Music helped us find joy after my oldest son’s hemophilia diagnosis
- Most men with hem A bleed-free 5 years after 1 Roctavian dose
- Supporting mental health when hemophilia treatment isn’t guaranteed
- With factor IX deficiency, saying I have ‘hemophilia’ isn’t specific enough
