Sometimes chronic illness holds us completely captive, and we lose moments due to pain or other complications. My family is no exception, as my youngest son experienced one year. He spent almost every holiday between October and February in the hospital. I helplessly stood by and watched my son lose…
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I know people who constantly run around to deliver their kids. Soccer, swimming, acting, tennis, dance … and they find little, if any, time for themselves. We lived in the city for the past six years, and running my kids to sporting events was not the norm.
“Help, my partner has hemophilia! What now?” I’ve been dating a person with hemophilia for four years. In those years, we’ve had a lot of memorable experiences together, but as his carer, I have also faced struggles. I’ll be honest and say that being a HemoGirlfriend isn’t exactly a…
We Struggle and We Move On
Both of my sons packed and all three of us MacDonald guys were ready for what my youngest calls a “Daddy and Son Mad-capped Adventure.” My wife had an out-of-town speaking engagement, so that meant the youngest had to travel with my oldest and me. We were on our way…
Frogs, Snails, and a New Chapter
We are in a new town. A fresh start. My mighty warrior already loves the landscape that allows him to catch frogs and snails and marvel at the rain. When we lived in the desert, the eyes of our little boy didn’t see these things as easily. While…
I have diabetes and give myself insulin shots every evening. There is not much to the process. I draw up the insulin into a syringe and find a place in the area around my stomach. Once I choose the site, I plunge the tiny needle into my skin. No harm,…
I’m Learning to Accept My Normal
My condition, hemophilia, has always been an enigma for me. It’s been a huge challenge to my personal development, physical health, and mental stability. I wanted to believe that this disease was given to me for a reason. However, as the years progressed, I was wracked with hemophilia complications, and…
My family just moved. My husband’s job has led us on another adventure. With moving comes boxes. They are everywhere, and we are in the midst of finding our way in a new house, and a new town. So far, things have gone well despite the stress of moving.
My partner Jared and I are confined to our bed. He got a small ankle bleed from tripping on an uneven sidewalk yesterday, whereas I woke up with a terrible case of nausea — just as I thought my morning sickness was starting to improve. Apparently, I have good days…
My youngest son wanted to play baseball. “Come on, Dad!” he pleaded. “I will wear a helmet and knee pads and anything else.” I wrestled with how to answer him. My son had a considerable complication called an inhibitor. Failure to make the correct decision might cause a horrific bleed…
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
