Next week, my youngest son will celebrate his 16th birthday. It’s hard to believe that so much has occurred in his young life. He has experienced the heartache of living with a bleeding disorder, and has often been paralyzed by his fear of needles. He has undergone 16…
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Teaching teens to take control of their bleeding disorders must begin early. I believe in empowering my sons with the information they need to go out into the world. When they were toddlers, I talked about the different items they’d need when we did infusions, and they began to…
After three months of living in a rented condo, my family is moving to a full-size house. My husband, Jared, and I want to think of this event as our Christmas and New Year’s blessing. Though the change was unexpected, we welcomed it with open arms. The only hassle,…
Welcome to 2022, a new year and a clean slate. Year after year, my New Year’s resolutions are the same: eat a more healthy diet, work out, and lose weight. This year will be different. Recently, a nurse phoned from the specialty pharmacy that provides medication to treat my von…
I will never forget the day my wife told me that she was pregnant with our first child. I stood there, unable to process her announcement of our boy’s impending entry into the world. I couldn’t fathom how my life would change. I struggled to figure out how I might…
I still need to select my one-word resolution for 2022. I usually have an idea by the end of November, but 2021 was busy and fruitful, and thinking about a word was not on my radar. I relished every moment of the year because I genuinely found peace. Instead…
I’m standing in line at a convenience store after my appointment at the salon. It’s almost lunchtime and my stomach is grumbling, as I left our condo without having eaten breakfast. My husband, Jared, who has hemophilia and a seizure disorder, had a series of seizures the day before…
I start every year by promising to make meaningful changes in my life. I hope to lose weight, exercise more, live a healthier life, and be a better parent to my children during their bleeding episodes. These New Year’s resolutions sound great, and when I am in my “safety…
So I get into the shower, and as I wash my hair, a memory comes flooding back to me. In a moment, I am standing face to face with it. My oldest son was 6 and struggling with a prophylactic infusion of recombinant factor VIII. The needle terrified him…
A friend called to tell me her teenage daughter finally received a diagnosis of mild hemophilia. Her daughter experiences bleeding complications and had been seeking a diagnosis for more than two years. While it is a relief to have one, it is another story to figure out what the…
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