One Thanksgiving season, nothing seemed to go right. Both of my sons suffered in completely different ways. “MacDonald the Older” faced bullies who looked forward to nothing more than terrorizing him, while “MacDonald the Younger” faced hospitalizations that lasted for lengthy periods. Hemophilia took its toll on both my sons and we couldn’t catch a break. We kept asking ourselves time after time, “When will this stop?”
Bullies aimed at “MacDonald the Older” like a target. He is very creative and does not march to anyone else’s beat. My son values artistic expression and sings beautifully and purely. Because he approaches life from an entirely different perspective, those who cannot understand his unconventional approach merely find ways to humiliate him. One day, two boys physically assaulted him. He required an extra dose of Factor VIII, and we thereafter lived in fear that our community was not a safe place. Our answer to his problem was a change of scenery. Life changed for him after moving to another city, but the scars remained.
“MacDonald the Younger” struggled with hemophilia in a way no one should have to in the 21st century. For him, bypassing agents proved only a temporary fix, if they worked at all. We often celebrated Thanksgiving in the hospital. His bleeds left him in constant pain and isolation from his friends. All he wanted to do was play with other children. Hemophilia made sure that my son would not run any time soon. The fear of developing another bleed caused us to take extra precautions during recess.
During that challenging season, we felt like there was little, if anything, for which we could be thankful. We moved through the rough seasons like robots. Put this pumpkin here, that basket there, and so forth. Joy did not seem to be present. We struggled along, hoping to get through the holiday and pack things away.
Chronic illness can be an unwelcome guest who refuses to leave. We drop many hints, expressing the need for it to go away. But sadly, that doesn’t happen. The illness not only stays, but dictates our schedule, demanding attention and holding on tight to the most precious things in the house, refusing to let go.
But there are glimmers of reasons to be thankful in even the darkest circumstances. While life continues to be interrupted by bullies, bleeds, and chronic pain, there are ways to find hope. My family bonded together and became a stronger, more united house. We held each other’s hands and knew that everything was OK. We celebrated in a hospital, still thankful, for gratitude did not depend on the responses of others. Real joy illuminates when hearts share with other hearts, laying claim to souls.
Remember that no matter where you are, love and support surround you. Let’s empower our brothers and sisters to remember that their stories matter because we learn how to move forward by reading and hearing the lessons learned by others. Your story influenced my story, so both of our stories grow. I will learn from you, and you can learn from me. Our journey together is endless, leading to what is beyond struggle: Thanksgiving.
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.