My youngest son, wife, and I just returned from an appointment with our hematologist concerning plans for treatment. In the twinkling of an eye, our worlds changed. We will move to a new procedure requiring an injection given every two weeks. How could this be? Wasn’t it last year that we were dosing my stinky boy three or four times a day? We kept the port (seven total) accessed to minimize sticks. Now, we took one giant leap closer to a cure.
I sat in the room for a minute and could not speak. (For those who know me, that is a highly unusual state.) I sat on what felt like holy ground. We had our worlds turned upside down with each diagnosis. Along the way, we discovered dear friends that we never would have known if we were not in the hemophilia community. Now, all the twists and turns led us to this moment. No more one-inch needles, port, or other various and sundry medical supplies that would make pharmacy jealous. There is no longer a need for an infusion closet because the language of hemophilia is about to change for us.
I turned to my son to make sure he understood what would happen to his 13-year-old body. Life would soon change for him in ways that none of us could imagine. My boy, who experienced the ravages of the disorder only a few short years ago, now had many possibilities available to him. Some, not all, of the tight restrictions with which he lived will be cast aside to open the door to new adventures.
I turned, and in the same moment, I thought of my mother, who would sit with us and cry tears of joy for both “MacDonald the Younger,” my wife, and me. We would laugh and wonder what the future could hold for all of us. Her greatest joy would be planning vacations that were impossible before this moment. Ruby Jane has been gone for over seven years, but she still comes to mind every day. On this day, all I could hear was her laughter through her tears.
All these things are in my head, as I sit silently deciding my next move. Yes, life will be different. It will change for all of us. Many years have passed since our worlds turned upside down. Through the bleeds, hospitals, and doctor visits, we learned to accept the space that hemophilia occupies in our lives. What do we do now that our lives are turned right-side up? That is the question.
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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