I’ve spent several nights in the hospital with my son, and I play tag with my wife. It is her turn to trade duties with me. I leave the medical center and head straight to the church, lead worship, eat a meal, and return to the hospital to share some time with my family. I finally get home and relax on the couch, where exhaustion takes over every inch of my body. My desire to watch TV is replaced by dreams. Sleep comes fast and deep.
For years, my family lived on a schedule that we did not want or choose. The hospital snuck its way, uninvited, into our routine. One spouse slept in one space, while the other traded places. Hemophilia, inhibitors, and allergies became a constant source of concern every day. There were no moments of reprieve because the complications related to “MacDonald the Younger’s” bleeding disorder would not stay at bay. It kept attacking him, and in so doing, launched a campaign against our family.
Those of us who struggle with chronic illness know that life becomes overwhelming at times. For us, the constant repetition of internal bleeding into the joints did not seem to stop. We felt powerless to do anything for our son, much less our schedules or relationships. It felt as if a hurricane blew through and cast a very dark cloud over my family. We kept waiting for the storm to pass, but it stayed for a very long time.
One of the many lessons learned during a very tumultuous season is that when life leaves us exhausted and weary, when we feel that we have nothing left to give, our love for each other can lead us to do things that we never imagined possible. The greatest lessons come to us when we least expect them, forever changing our perception of life and the world around us. A seed can grow, even in the darkest of places. We may be tired and weary, but still have enough left in us to plant the tiniest of things that renews our strength.
I discovered that I have what it takes to weather the storm. In an instant, my world can move from darkness and into the light. In my days of exhaustion, my thoughts could never wander to how we live with hemophilia today. It is a different story. In a second, a moment, the world changes drastically. Nothing stays the same.
“MacDonald the Younger” gets along very well these days. He has not been in the hospital due to a bleed in almost five years. My days of weariness due to visiting the medical center gave way to being tired due to balancing the many hats I wear in the world. And for that, I am grateful.
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 Services, and are intended to spark discussion about issues pertaining to hemophilia.