Let me tell you one of my secrets: I have anxiety. I don’t mean the kind of anxiety you’d feel if a package hadn’t arrived days past a delivery date. Or if you were lost in an unfamiliar place at night trying to find your way home. That kind of…
Columns
Part three in a series. Read parts one and two. With the invention of the map created by my son’s medical team, my wife, and me, the most challenging year that we ever experienced ended. My son did not have another absence while in elementary school due…
It’s not easy to live with hemophilia in the Philippines. When we hear stories of hemophilia care around the world, it’s hard not to feel envious of hemophiliacs outside of our country who receive proper healthcare and can live a normal life. In this column, I will tackle the issue…
My eldest son, Julian, is 22. He is studying music at college. It’s his passion, and as I have a music education degree and my husband has a music degree, his course choice did not come as a surprise. With our recent move, Julian changed schools, and his…
Part two in a series. Read part one. My family was taught many lessons in the year that everything appeared to fall apart and hemophilia became a nightmare in our lives. The most significant lesson was to cherish every moment. Sometimes in life’s most significant challenges,…
I met with my mighty warrior’s new principal and school nurse last week. I took my presentation, and thanks to the Hemophilia Federation of America, I was ready to teach and answer questions. Most importantly, I wanted these individuals to feel at ease and not scared of my son.
I’m looking at you, insurance companies and banks who won’t approve people who have a history of chronic illness or who were born with one — such as my husband, who has hemophilia. Of course, I am looking at this from a different perspective than the one businesses take. Then…
Helpless, but Not Hopeless
Part one in a series. I stood over my son’s hospital bed, waiting for the morphine to kick in and give him some relief. “MacDonald the Younger” continued to scream as the pain became unbearable. My boy had once described to me his experience of a bleeding…
I’ve always had a hard time coping with the fact that it’s quite difficult for me to find a decent source of income due to hemophilia and epilepsy. Although government and private institutions say that they are inclusive of persons with disabilities (PwDs), the reality is that discriminations against…
Caeleb is super excited about starting the seventh grade this week. He loves the new town we are living in and is hopeful for the school year. He wants to play basketball. Now, most people would say that is a normal thing for a 12-year-old boy to want…
Recent Posts
- My grandmother had a bleeding story. I had a hemophilia diagnosis.
- Care disruptions fueled pandemic stress for patients in China
- From our voices to theirs: Teaching our sons with hemophilia to self-advocate
- Oral hemophilia A treatment shows promise in preclinical studies
- Learning to pause and remember when the miraculous becomes routine
