Originally published by Hemophilia News Today, April 3, 2024
What do AA batteries, binder clips, bread ties, lip balm, pens and pencils, pliers, a glue gun, and a measuring tape have in common? They’re all items in my kitchen junk drawer. It’s a chaotic place that holds them till they’re needed at a moment’s notice. I’m grateful that it’s the only place in my home that’s in constant mayhem.
What do AA batteries, binder clips, bread ties, lip balm, pens and pencils, pliers, a glue gun, and a measuring tape have in common? They’re all items in my kitchen junk drawer. It’s a chaotic place that holds them till they’re needed at a moment’s notice. I’m grateful that it’s the only place in my home that’s in constant mayhem.
When Caeleb endured bleeding in his right knee, we measured the joint at intervals to determine if it was getting smaller and thus better. For accuracy, my husband and I used a marker to delineate the exact space where the tape measure needed to be. Every few hours, I’d get the tape, set it between the lines, and hope the circumference was lower than it’d been. It was a difficult time in my son’s life, as well as our family’s.
The tape measure would often be the deciding factor that determined whether Caeleb needed to be admitted to the hospital or could stay at home. When calling the hemophilia treatment center to report on his condition, we had the numbers that detailed the increase or decrease in the circumference of his knee. That was critical. When the number increased, it was heartbreaking, but when the number decreased, joyful moments ensued.
Caeleb later began a treatment, Hemlibra (emicizumab-KXWH), that changed his life. He hasn’t had a joint bleed since 2014, so having these tape measures around and easily accessible is no longer necessary. Finding the little red plastic measure reminded me of years of heartache, but it also brought a smile to my face.
I’m happy that my son is no longer enduring painful joint bleeds. My heart overflows with joy that the years of bleeds and hospitals have passed. And most important, my soul is overwhelmed by the strength my son exhibited through those worst of times.
