Helpless, but Not Hopeless: Part 2

Helpless, but Not Hopeless: Part 2

Part two in a series. Read part one

My family was taught many lessons in the year that everything appeared to fall apart and hemophilia became a nightmare in our lives. The most significant lesson was to cherish every moment.

Sometimes in life’s most significant challenges, we learn to embrace hope whenever we can find it. It could be in a funny little pumpkin that we bring to a hospital room to remind us of a kid’s holiday that is nothing short of sacred. We might also discover the joy we share in finding happiness while watching a favorite Christmas movie played by a rented projector onto a white bedsheet draped over the window of the hospital bed that my wife and I take turns sharing every other night. Hope comes to us in the least expected times, and that is the most incredible thing that we discovered in the most challenging year we have known.

Our lives changed in the most unassuming way. “MacDonald the Younger” struggled with another pesky bleed and spent another few weeks in the hospital. It was February, and the ravages of the continuous stays at our home away from home began to take their toll on my entire family, my son included. He wanted to go back to school and be around his friends. Second grade seemed to pass him by. For a social butterfly like my boy, constant absences prevented good conversations and great playtime with friends. We needed to do something.

One of our hematologists came into our room and sat down and spoke with my wife and me. He explained that our boy suffered way too many bleeds and that we needed a better course of action so that we could improve the quality of his life. He suggested creating a map to chart a strategy by which every facet of his life might have a plan. We agreed with the good doctor and wanted to help.

The next day, the hematologist came in with a basic chart regarding medical issues. He asked us to look the map over and add anything we felt was missing. We agreed and brought the amended table back to the doctor. In a concerted effort, the medical team and my wife and I built a chart that served as the foundation for my son’s continued good health. He no longer bled, which meant no more hospitalizations. February 2014 marked the last time that “MacDonald the Younger” experienced a joint bleed. And to think, it all started with a map.

I often think back to sitting around the room feeling grateful the Christmas we watched “It’s a Wonderful Life.” I felt like those brief moments brought my family the hope we needed in the most difficult of circumstances. What I couldn’t see at the time was the realization that it could get much better. Feeling helpless is part of the process for those of us who struggle with a chronic illness. The key is to hope.

Next week: rediscovering mobility and teaching “MacDonald the Younger” to ice skate. 

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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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