Now and then, my husband, Jared, loses consciousness and falls to the ground. To an unknowing onlooker, the sight is alarming. Some wonder if he has fainted. Others worry about his heart or think he may have had a stroke. As his wife of one year and partner for five,…
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I recently noticed that our healthcare providers offer virtual visits as part of our current insurance. I was fortunate last week to attend an event hosted by the Virginia Quality Healthcare Network. The presentation featured a talk on telehealth by Dr. Karen Rheuban, co-founder and director of…
My wife and I were trying to find the perfect gift for one of our favorite people. We needed to find a bow tie, but not just an ordinary, humdrum kind. It must have a road map from one place to another. Our friend, who happened to be one of…
My 13-year-old son Caeleb, who had severe hemophilia A and an inhibitor, has not had a bleed in five years. For three of those years, he received a daily infusion with a plasma-derived product, and for the past two years, he has been on a treatment that…
A conversation Last night I dreamed that I spoke with my father. I asked him how he knew he had a bleed. Did his knee bubble like a soda? Was it tight, but not painful? I yearned for his input, but my alarm sounded before he was able…
A few days ago, I gave my husband, Jared, a factor IX infusion for a back bleed. It wasn’t so bad that he couldn’t move around, but in his words, it felt “annoying.” He was already suspicious about it the night before, but he decided to wait it out,…
Last week, I did something I never dreamed I would do: I taught “MacDonald the Younger” how to ride a bike. At 13, he is considered a senior statesman in our neighborhood. Other children learn at age 5 or 6 how to balance on two wheels and head down the…
When your children move into adulthood, managing their bleeding disorder becomes their responsibility. I have worked hard to prepare my adult son. He says “adulting” is not fun. I laugh and tell him that he’s joined the club. He has ordered his own factor since middle school, but I…
I am not merely a carrier of hemophilia. I am certainly not an asymptomatic carrier of hemophilia. I am not even a symptomatic carrier of hemophilia. I am a woman…
I’ve recently taken to collecting pearls. It started as a stock-obtaining activity for the jewelry business I run with my husband, Jared, who has hemophilia. It has since grown into a full-fledged personal obsession. This means I’ve been making a lot of sentimental purchases, but I have absolutely no regrets.
Recent Posts
- January’s reset means the system restarts, but our bodies do not
- People with hemophilia face 46% higher risk of bone fractures
- It’s important to find moments of joy amid the darkness of hemophilia
- With hemophilia, time went from standing still to flying by
- An unsettling dream reinforced the importance of building connections