In an instant, things can change and redefine who we are. One minute life appears to take us down one road, and then we encounter something that brings us toward an entirely different destination. Whatever happens, we know that life will never be the same again, and our entire perspective changes. We are left to pick up the pieces and trust that something deep within ourselves will help us to find our footing.
For those of us who care for a child with a chronic illness, we know that circumstances can collide to guide us to the instant in life that redirects our course. These circumstances can be a sudden incident or a continuous injury that irritates a joint or an internal organ. When we realize that what we have encountered is beyond our control and that sometimes there is no medicine to help curtail the ravages of the storm, our world changes. We are left to figure out how to pick up the pieces and move forward.
My youngest son had the mother of all complications regarding a bleeding disorder. While hemophilia affects roughly one in 5,000 male births, one-third of these have something that acts like an allergy called an inhibitor. He also had something so rare that only a handful of people in the world have it: an allergy to the product he needed to clot. In an instant, life changed for us with unique diagnosis, upon diagnosis, upon diagnosis. Would the struggles ever stop?
In a moment, bleeds became the norm, and we called the hospital home. We started dreaming of the days that my son could participate in school for at least a week without visiting a doctor. The ravages of my boy’s bleeding disorder sought to claim the very heart of our family. The kid who yearned to play baseball and soccer now found himself in a wheelchair. He did not walk without assistance for well over a year. My split-level home had a walker on each floor so that “MacDonald the Younger” could experience some element of freedom.
While we continued to live in and out of the hospital, we encountered another “instant.” While in the hospital an on-call hematologist visited my son’s room and encouraged us to help the medical team develop a health map for my son. The doctor started by writing about health issues and ways to manage bleeds and other hemophilia-related complications. We followed up by chronicling educational and psycho-social developments. Between us, we put a tangible plan in place to treat my son. This guide eventually led to a kind of healing that we couldn’t have previously imagined.
In an instant, new circumstances arise, and we must accept a new reality whether we want to or not. Our journey is not beautifully laid out, scripted, or planned. We must take it step-by-step, trusting that we have what we need within us to stay on the path. Life happens when you are busy making other plans. It is up to us to embrace our reality while the blueprints we envisioned fade away, at least for a season.
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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