In the wee hours, navigating life’s challenges with community
All kinds of families offer comfort during the crises of early-morning darkness
A phone call in the wee hours of the morning makes the heart skip a beat, as it often brings bad news. A baby crying in the middle of the night means a sleep-deprived parent going through the motions of changing diapers and warming bottles. When the quiet hours of the night are disturbed, the light of day seems far away.
I received a life-changing phone call in the early-morning hours one day in July 1996. It was a doctor calling to tell me that my mother had died from a heart attack while recovering in the hospital from an unrelated illness. The hours until the break of dawn were filled with grief while my newborn son, Julian, was sleeping in his bassinet at home. The joy I felt with my new baby had been taken away by the news of my mother’s sudden death.
The wee hours are not my favorite time of day.
My son’s early a.m. crises
Raising two sons with hemophilia meant many late-night trips to the emergency room. Waiting for CT scans and infusions often took hours. Those early hours turned into daylight, and the world went on despite the interruption to my schedule. Did it care what happened to my sons?
When my youngest, Caeleb, spent several years battling joint bleeds, his hemophilia found the time of day irrelevant. When would the next bleed happen? I lived with heightened anxiety during his difficult years.
I was grateful when bedtime came and everyone fell asleep. The house was quiet, and I planned for the next day. There were times, however, when Caeleb would crawl to my side of the bed in the middle of the night. He’d reach out to touch my arm, and through tears he’d say, “My knee hurts, Mommy.” My adrenaline kicked in, and my husband and I packed a bag before one of us left for the hospital with Caeleb.
During those hospitalizations, my husband and I would take turns staying with our son. Caeleb often needed hours to fall asleep because of the pain from his internal bleed. Once he did, I was often wide awake, listening to the beeping monitors through the night. At that time, though, there was something that made the wee hours beautiful.
Alone in the quiet, I’d go online and scroll. I checked social media, articles, and blogs, my mind racing as I waited for my son to wake. One morning on Facebook, I saw a green dot signaling that a “hemo mom” I knew well was online. I reached out via chat, and we talked by text for over an hour. She helped calm my heart.
While the early hours of the day are still not my favorite, if I’m awake and online then, I respond when someone reaches out. Being in the darkness alone can be frightening.
That darkness doesn’t last forever, though. It can be unnerving, but if you wait long enough, the light comes.
Living with hemophilia isn’t a 9-to-5 existence. Incidents happen during the day and night. Having a support system in place helps make the scarier, lonelier times more bearable. I’m grateful for my friends in the bleeding disorders community. While there’s always wisdom to offer and stories to share, this family always knows when to give advice and when to simply listen.
Members of this community are alongside us, day or night, as if our struggles were their own.
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.