I often wonder what my sons feel when they are in the middle of a bleeding episode. Both boys tell me that a bleed into a joint or muscle feels like needles constantly stabbing into the skin.
The pain is unbearable and doesn’t let up until a medical clotting agent helps their bodies stop the steady stream of blood into parts of the body not designed to handle it. The time it takes for the medicine to kick in seems like hours, when in fact it works almost immediately upon entering a vein.
For “MacDonald the Younger,” bleeds did not heal as quickly. Because his body fought against the medicine (he had what we call an inhibitor), treatments often took days to produce any relief.
We did anything we could to help keep his mind off the bleed. We played games, watched his favorite movies, even went on journeys around the hospital. Sometimes, distracting him from the pain proved successful, while at other times, we could only sit with him and hold his hand.
As a father, I constantly felt like a failure. I am the person who is supposed to protect my child. Dad always finds a solution to a problem. I am the cheerleader, but many times, I needed someone to cheer me on.
Thank God for my wife, who always offers support. We are very good at helping each other through difficult times, when life feels out of control and the chaos of hemophilia takes over. Her strengths are my weaknesses, and vice versa. We stay aware of each other’s needs and offer unwavering support through difficult times.
MacDonald the Younger is in a much better place with treatment. He no longer faces bleeding, and the new approaches to therapy are incredible. Gone are the lengthy hospitalizations and constant pain that plagued his life for years. We do not face the possibility of medical chaos with each breath. Life is — dare I say it? — consistent and routine.
Over 20 years of being the dad of two boys with hemophilia, I’ve learned that no bleed lasts forever, and that the way we demonstrate hope through the worst moments teaches our children how to manage the darkest of times.
Even great pain will subside, and we experience peace, even if only for short amounts of time. We have no idea what the future holds. Today’s pain can be resolved tomorrow.
I hope my boys have learned that my wife and I love them with all of our hearts. We move heaven and earth to give them the best quality of life possible. We give them the best we have to offer. Hopefully, we know how to say the right words or hug the best way to convey comfort in all circumstances.
If we leave our sons with a great legacy of love, everything else is manageable.
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.