Discovering ‘Aha’ Moments While Raising Sons With Hemophilia

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by Joe MacDonald |

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I am convinced that many of us live for “aha” moments. I’m referring to those times when an unexpected realization occurs that either confirms or changes the course of one’s life. These moments are often welcome guests, but sometimes they rage like a fierce hurricane, and the best we can do is batten down the hatches and wait for the storm to clear.

I experienced several aha moments regarding my boys and their bleeding disorders. As a dad, I had dreams and expectations for my sons. Although I am not one to sit around and watch many sporting events, I decided to work through my issues, hold steady, and support my children.

“Even if they play football,” I thought to myself, “I will attend every game, ready to cheer them on.”

A big aha moment came as I surrendered to the fact that certain contact sports posed too great a risk for my boys. I moved from allowing my children to be what they wanted to be, to gently guiding them to participate in things they could do to achieve their goals. As it turned out, my sons didn’t like participating in sporting activities. My oldest son is a theater and music geek who thinks anything off stage is a waste of time. My youngest loves art, and has no desire to participate in athletics.

Another aha moment occurred when my oldest son was about 6 months old. I’ll never forget sitting in his room and watching him sleep in his crib. There was little light to pierce the darkness. I looked at my incredible boy and wondered how the diagnosis of hemophilia would change my family’s life. What did the future have in store for him?

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How I’m ‘Future-proofing’ for My Chronically Ill Family

The only thing I knew to do was put my hand on his tiny back and pray for safety and assurance that my wife and I could weather the storms that a bleeding disorder brings. I surrendered my fear to something greater. I set aside my worries and focused on my son’s needs rather than my feelings of helplessness.

My youngest son struggled with a big fear of needles, and he wouldn’t remain still when it came time to infuse him with factor VIII. I tried everything to keep him still, but nothing ever helped. Finally, I looked at him and said, “Son, whenever you feel ready to infuse, stick your thumb up real high. Then, when I see it, I know that you are calm and ready to start the process.” To my delight, this trick worked, and he remained still. We never struggled with a fear of needles after he realized he had some control over the situation.

My aha experience occurred when I realized that my boy needed a sense of control over his body. He wanted something that I take for granted — a sense of being in charge of what happens to him.

I realized that my part of the journey included a commitment to being present and providing for their needs when events occurred. Surrender and gratitude are the most important spiritual disciplines that I maintain while raising my children. Through my absolute focus on their joy, aha moments come into my life. These moments might be in the form of a new friend, a discovery, or a deepening love for what I have.

May we all stay present in the moment and allow those aha moments to strengthen, encourage, and empower us.

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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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