My youngest son wanted to play baseball. “Come on, Dad!” he pleaded. “I will wear a helmet and knee pads and anything else.”
I wrestled with how to answer him. My son had a considerable complication called an inhibitor. Failure to make the correct decision might cause a horrific bleed into one of his joints. What if he couldn’t keep up? What if the other kids noticed that he struggled? Did I give into the fear of being injured or did we take the risk and let him participate with the rest of his friends? Up to now, this proved to be the hardest decision I had to make. In the end, I allowed my son to decide, and I supported him. He would also be the one to tell me that running around the bases was too tricky.
I went to practice and watched as he ran with joy, playing with his friends. Unfortunately, each time at bat grew more difficult. In the Pee Wee leagues, the ball is placed on a cylinder cone, assuring that every child hit the ball. One time, my son swung his bat and hit a grounder to second base. I watched him run, and I wanted to go out and take him away. I tried to protect him, but I couldn’t.
I looked at his feet, and his right ankle swelled up like a baseball. All the running put pressure on his joints, causing an internal bleed. We were living in a small town, approximately a two-hour drive from a hemophilia treatment center. Immediately we put him in the car and drove as fast as we could to Albuquerque. My son began to cry because the pain he experienced felt like knives pounding into his flesh. His mother sat with him in the back and held our 7-year-old amazing young man as I tried to avoid any bumps in the road.
My biggest fear appeared right before me. I knew that I should not have allowed my boy to play. What was I thinking? I blamed myself for his bleed. I know that if I only would have been more adamant that he not play we would not be in this mess. Riddled with guilt, I entered the hospital.
The hematologist responsible for my son’s care greeted us and looked at his bruised and swollen ankle. She spoke to “MacDonald the Younger” and asked him how the injury occurred. Fighting through his pain, he described the events of the day. The Good Doc thanked him for talking with her and asked if she could speak with my wife and me for a moment. My son required hospitalization until the bleeding stopped. She also suggested that “Mr. Man” not play sports that cause unnecessary strain on his joints. With the complications of having an inhibitor, playing baseball was not a good choice for him at the time. She told us that she would talk with “MacDonald the Younger” about not participating.
We were conflicted over how we should talk to our guy concerning his involvement in activities. Initially, we thought we should tell him, but one of the nurses told us, “Let his medical team be heavy-handed so that you can be his parents. He will need a shoulder to lean on as he processes his limitations. Be the shoulder that he needs.” I looked at the nurse, and at that moment a wave of gratitude swept over me for our team. I mean all of us: his medical team, his parents, and those who love my son with all their hearts.
“Mr. Man” spent two weeks in the hospital. The bleeding eventually stopped, and we returned home. He could not wait to go back to school to see his friends. Unfortunately, more bleeds far worse occurred over the next several years. In fact, things generally got a lot worse. What came out of this event was a realization that we share a part in my son’s treatment. Our voice compliments the other voices that make up his medical team. Together, we are a passionate group of people, hoping to make a difference in “MacDonald the Younger’s” life.
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.
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