Finding Pockets of Joy Amid the Commotion of Hemophilia
There are moments when dealing with hemophilia proves overwhelming and we lose ourselves in the fight to overcome the pain of breakthrough bleeding.
My youngest son, affectionately called “MacDonald the Younger,” dealt with two target joints, or places where bleeding episodes occur repeatedly, prior to his current treatment. His right knee would flare up, and as soon as we medically treated him with recombinant factor VIII, another bleed would start in his right ankle. The kid could never catch a break.
In the midst of all the commotion, we learned to find little pockets of joy that carried us onward. As a family, we would play board games when the pressures of a bleeding disorder weren’t rearing their ugly head. Once we rolled the dice, our concerns gave way to winning, and hemophilia took a back seat to our fun.
To this day, my family knows me as air hockey champion. My reign will someday come to an end, but I raise my title high and am proud. For me, joy comes in the form of seeing my sons forget about their worries for a few brief moments.
Laughter must be a part of our day as joy fights back against the disease, reminding us that we are more than a diagnosis. We are complete human beings with a range of hopes, fears, and dreams. Therefore, our mental health must receive nourishment as we care for one another and travel on life’s journey. When we experience hope, we fight against the ravages of disease and remind ourselves that although storms may come, we will rediscover happiness.
I am not referring to a false sense of happiness involving fake laughter. The games I play with my stinky boys celebrate much more than manufactured contentment, where the primary intent is to create a sense of alternate reality. We laugh because we can take a few moments to celebrate our bonds as father and son. Once again, we give thanks for each other and the quirky ways we belong together as a family. Our joy celebrates the bond that runs deep through our veins.
Managing a chronic illness such as a bleeding disorder can leave someone feeling helpless or out of control. Yet, we know we can work together to overcome the enemy that rages within us during difficult times. Hope finds its way through the hardest of circumstances and into the world of joy. We come together to celebrate the ways we made it through the darkness and into the light.
A family game that we enjoy playing together is Chinese checkers. My oldest son, “MacDonald the Older,” takes his reign as champion very seriously. We try to think at least four steps ahead to beat him, but he always remains victorious no matter how hard we try. “MacDonald the Younger” cannot lose when playing Mario Kart. We surrender to his wondrous abilities to race faster than any of us.
No matter who wins or loses, the joy of sitting with my stinky sons and beautiful bride fills my soul. Sometimes, while playing a game, I sit back and feel the presence of hope pervade through a hospital room or wherever else we may find ourselves. Its presence seems to cry out, “Here I am. I have you in your darkest days and in the days that shine brighter than the sun. I gave each of you to one another, to care for each other through good times and bad.”
Hearing the message of hope ring true in my family’s life brings me comfort and great joy. So let us celebrate the special moments we have when our medical concerns subside for a simple moment, and we can laugh and share in our loved ones’ company.
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.