With the invention of the map created by my son’s medical team, my wife, and me, the most challenging year that we ever experienced ended. My son did not have another absence while in elementary school due to a bleeding episode.
During his horrible year of hospitalization after hospitalization, “MacDonald the Younger” counted over 50 absences. Third grade, the year following the map creation, brought about five. Our son felt like he regained control of his life. My wife and I did, too. No more packed suitcases preparing to spend a series of nights at the hospital. The family routine began and ended with all four of us in the same house.
Throughout the entire year, I shared my family’s journey with different friends and other groups. Every time I spoke about my son, I talked as if I held the position of a court reporter. I did not speak with any emotion, nor did I allow myself the chance to process any of the experiences from our difficult season. Life went on, and so did I. I did not want to look back, but I later learned that to heal, I had to visit the most problematic of all times. It was not easy, but I had to face my pain head on.
I did not know that I started down the road to healing until an encounter with a physical therapist. My son began attending classes to help build muscle in his leg that suffered from so many horrific bleeds. It was right after the New Year, and we walked to the treatment center to meet our therapist. She said hello to my son, and as she spoke, I remembered her. She worked with “MacDonald the Younger” when he was in bad shape. Mary, the therapist, looked at me with a sense of amazement. She said, “I can’t believe that this is the same kid that I saw not so long ago. He can walk. He looks wonderful!”
When I began to speak, something overwhelmed me. In that instant, in the twinkling of an eye, a floodgate of memories surrounded me, and I gave thanks that my family’s journey did not remain locked in the past but continued to a place of healing and recovery. My spirit soared that day as I cried for the first time since our process started. Life is good for us, and one day we will be grateful for the many lessons we learned while on the road that we traveled.
We left Ms. Mary, and I could not help but feel like life honestly continued to improve. It took me many days to fully process the significance of the horrible year that my son endured. I spoke with many friends and groups about the things that we experienced. What makes sharing my family’s story different is that passion fills my conversations, plus the many emotions that I kept locked inside for a long time.
While it is true that managing a chronic illness can overwhelm and devastate a family, those who remain close and faithful to one another stand a better chance to navigate the tricky waters of hospitals and roadmaps that lead to healing. Standing together is the best option, and sharing joys and disappointments with a spouse or a loved one makes the journey through chaos easier to manage. And above and beyond everything, we must keep a sense of hope in all circumstances. Helplessness cannot live in a place where courage dwells. May we remember to claim the assurance that time will not stand still and what may appear lousy today will look much different tomorrow.
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.