Helpless, but Not Hopeless

Helpless, but Not Hopeless

Part one in a series. 

I stood over my son’s hospital bed, waiting for the morphine to kick in and give him some relief. “MacDonald the Younger” continued to scream as the pain became unbearable. My boy had once described to me his experience of a bleeding episode as the sensation of little needles repeatedly pushing through his skin. I couldn’t begin to imagine the kind of horror he faced as we prayed that the medication would finally kick in and bring him some relief.

Three hours passed and still nothing. We thought: “When will this end?” I felt helpless as I watched. I could not will away his awful bleed. Panic set in as I realized that we had no more medical options. Little did I know that the worst part would soon show its ugly head. I looked at my son’s leg and noticed that the knee where the bleeding occurred was continuing to swell, and as it did, my son lost a significant range of motion. His leg lay at a perfect 90-degree angle. “Wait! Stop!” I pleaded. “What is going on with my son?”

I took solace in knowing that as soon as the bleeding stopped, all would be well. Then, the meds started to work, and we all breathed sighs of relief. Finally, after six hours of pain and a bent knee, my wife and I could relax. But what about his knee? Something did not appear to be right.

We asked a doctor to examine my boy. I wanted to know when his knee would settle down. The attending physician came into our hospital room and expressed satisfaction that the medicines had worked. I asked about my son’s knee, and he replied, “All will be well. His leg will straighten out in about two days.”

Two days passed and there was no change. Four days, eight days, one month, and still nothing. My boy maneuvered around with the use of a wheelchair. We had no idea how long it would be until he could walk again. While we were being MacDonald the Younger’s cheerleaders, my wife and I felt as if we were dying on the inside.

Helplessness does not come quickly to us. When faced with a crisis, my wife and I find solutions to problems. However, this time we navigated, but we found nothing that could rid us of our intense fear. Everything seemed hopeless as our incredible masterpiece of a son now faced life sitting down. Words failed us. We could not do one blessed thing but to love our surprise baby and comfort him. I set out to reassure him that no matter how severe a bleed may be, his mom and dad would find a way to comfort him until the pain went away. We will reassure him that when everything seems dark and there is no sunshine, we will keep him close.

The blackest of times passed, but it would take about a year before we saw a noticeable difference in the range of motion in my son’s knee. We used the wheelchair while we ran errands, but he used a walker on each of the floors of our split-level house. Mobility became an issue, and for a while, we explored new ways of being a family. Through all the difficulties and struggles, the one constant that remained was our unwavering commitment to our family. We thought that life would get better and that our struggles challenge us to reach into the unknown. We repeat that “while life is a struggle, we always have each other.”

Next week: The family maps out a strategy for reducing bleeds. 

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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.

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Joe is the father of two sons with hemophilia. He and his wife Cazandra are active member in the bleeding disorders community and often facilitate workshops both locally and nationally. Joe is a pastor in the United Methodist Church and writes a blog about spirituality and faith. You may follow his blog at www.joekmac.com.

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