Milestones Have Resonance When Living With Hemophilia
A columnist considers life when a family member dies near her birthday
“It’s my party, and I’ll cry if I want to,
cry if I want to,
cry if I want to.
You would cry too if it happened to you.”
On Sept. 6, my birthday, this 1963 Lesley Gore song, “It’s My Party,” played in a continuous loop in my head and became the theme song for the day.
This birthday was unlike any other. Two days earlier, my aunt Linda unexpectedly had trouble breathing while we were playing the Oh Hell! online card game. It had become a near-daily event since the onset of the pandemic and kept us connected.
After she nearly won the first game, Aunt Linda’s breathing became strained. I said, “Are you OK?”
“No,” she said.
She told us in a frail voice that she couldn’t breathe. I told her I was going to call 911. Aunt Linda was in Illinois, and I was in Florida. My other aunt and uncle had been playing the game from California. We did our best to coordinate a cross-country recovery effort, but it wasn’t enough.
Seven minutes after I called 911, the ambulance arrived. Her heart had stopped, and she’d probably been without oxygen for several minutes. The paramedics restarted her heart. A ventilator kept her alive for another day, long enough for us to say a proper goodbye over the phone.
My mom and I rushed to Chicago to be with family. I wanted to cancel my birthday, but birthdays were important to my aunt, so we did our best to celebrate. I cried while my relatives sang the “Happy Birthday” song.
Lessons learned
Aunt Linda taught me the importance of birthdays, family, and thank-you notes. She had a close relationship with her two sisters. Holidays were important to her, too — she hosted every Christmas I remember. “To have a friend, you have to be a friend,” she said.
Hundreds of friends and family came to the funeral home to pay their respects. One of her grandchildren’s friends remarked, “I hope there is no room in the parking lot like this when I die.”
As those of us with bleeding disorders know, each year is a gift that should be celebrated. Thanks to considerable advances in treatment, most of us lead normal-ish lives, but you never know what surprises lie around the corner. Most days, I feel invincible, even with my hemophilia. I’ve survived a tainted blood supply in the ’80s, life-threatening bleeding episodes, and pulmonary embolisms in my lungs. This event reminded me how life can change in mere seconds.
COVID-19 robbed us of many celebrations. From now on, I vow to celebrate birthdays, write thank-you notes, and be a friend. Rest in peace, Aunt Linda.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
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