Amid the excitement of hemophilia, find pockets of joy

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There are moments when dealing with hemophilia is overwhelming and we lose ourselves in the struggle to overcome the pain Breakthrough bleeding.

My youngest son, affectionately known as “MacDonald the Younger,” looked at two target joints or areas where bleeding occurred repeatedly before his current treatment. His right knee would flare up as soon as we got him medical attention recombinant factor VIII, another bleeding would begin in his right ankle. The child could never take a break.

In the midst of all the excitement, we learned to find little pockets of joy to carry us on. As a family we played board games when the pressure was on Bleeding disorder did not raise their ugly head. Once we rolled the dice, our concerns gave way to winning and hemophilia took a back seat to our fun.

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My family knows me to this day as an air hockey champion. My reign will come to an end one day, but I hold my title high and I am proud. For me there is joy in seeing my sons forget their worries for brief moments.

Laughter has to be a part of our day as joy fights disease and reminds us that we are more than a diagnosis. We are complete human beings with a range of hopes, fears, and dreams. Hence, as we take care of one another and travel on our life journey, our sanity must be nourished. When we experience hope, we fight the ravages of disease and remind ourselves that despite the storms, we will rediscover happiness.

I am not referring to a false sense of happiness with fake laughter. The games I play with my smelly boys celebrate a lot more than just artificial satisfaction where the primary intent is to create a sense of an alternate reality. We laugh because we can take a few moments to celebrate our bond as father and son. Thank you again for each other and for the bizarre way we belong together as a family. Our joy celebrates the connectedness that flows deep through our veins.

Treating a chronic condition like a bleeding disorder can leave someone feeling helpless or out of control. However, we know that we can work together to overcome the enemy that rages within us during difficult times. Hope finds its way through the toughest of circumstances and into the world of joy. We come together to celebrate how we made it through the dark and into the light.

One family game that we like to play together is Chinese checkers. My eldest son, MacDonald the Elder, takes his reign as champion very seriously. We try to think at least four steps ahead to beat him, but he always stays victorious no matter how hard we try. MacDonald the Younger cannot lose while playing Mario Kart. We indulge in his miraculous ability to drive faster than any of us.

No matter who wins or loses, the joy of sitting with my smelly sons and my beautiful bride fills my soul. Sometimes while playing a game I sit back and feel the presence of hope permeate through a hospital room or wherever we are. His presence seems to scream, “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 one another in good times and bad. “

Hearing the message of hope true in my family’s life brings me comfort and great joy. So let’s celebrate the special moments we have when our medical concerns subside for a simple moment and we can laugh and share in the company of our loved ones.

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Note: Hemophilia News Today is a pure news and information site about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended as a substitute for professional medical advice, diagnosis, or treatment. Always contact your doctor or other qualified health care provider with questions about any medical condition. Never disregard or hesitate to seek professional medical advice because you have read something on this website. The opinions expressed in this column are not those of Hemophilia News Today or their parent company BioNews Services and are intended to have discussions on topics related to hemophilia.


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