Sometimes chronic illness holds us completely captive, and we lose moments due to pain or other complications. My family is no exception, as my youngest son experienced one year. He spent almost every holiday between October and February in the hospital. I helplessly stood by and watched my son lose the ability to walk. He suffered from an internal bleed that occurred right in the knee joint. As the bleed progressed, he lost mobility in his right leg. He could not fully extend his leg, and the bleeding continued for almost four months.
My oldest son suffered the effects of bullying when two boys pushed him from a 6-foot-high banister. While he experienced some bruising, the mental anguish proved far more challenging to overcome. In time, he managed to overcome the effects of the horrible words and violence hurled at him. His path looks promising as he continues to study musical theater in college.
Hemophilia reared its ugly head in our family many more times than I care to admit. For me, as the caregiver, it is sometimes overwhelming. I can’t imagine how my son must feel.
Last week, my stinky, younger boy and I went to the ice rink near my home. He wanted to go with me to see me skate. I enjoyed seeing him sit in the stands. Figure skating was a part of my life that I had not shared with him. The ice is my solitude.
As I left the ice, my MacDonald the Younger said to me, “Daddy, I wish I could skate.” It never occurred to me that he would want to join me. I quickly searched for the right words to say to him. I said, “Son, I will teach you how to skate.” As I listened to the words come out of my mouth I realized that all I have to offer my amazing boy are words of assurance. For “MacDonald the Older,” I shared my love of singing with him as I taught him voice lessons for several years. Sometimes a quick message of hope is all that we can bring to the table in the toughest of times. These powerful words filled with confidence and a promise that things will not stay the same.
I give thanks today that we are at a new point in our treatment that continues to empower both of my boys. Both mighty MacDonalds follow a healthier path than any of those with bleeding disorders before now. My youngest, with the help of a good physical therapist, stepped away from the wheelchair several years ago and never looked back. My oldest sings and everything else fades away. We will look back on our seasons of struggle and give thanks for the lessons that we learned through these difficult times. I will teach him to skate, and I will teach him how to sing. I will also show them both many other things reserved for dads and sons. I will continue to be their biggest cheerleader, their most prominent advocate. I will …
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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