Wouldn’t it have been nice to receive an instruction manual when first diagnosed? The doctor might share a blueprint, surefire way of raising a child with a bleeding disorder: “Follow this when this happens, and all will be fine.” Those who manage chronic illnesses know full well that there is no such thing. A disease or disorder does not come with a one-size-fits-all method of treatment. There are bumps along the way, followed by doubt and insecurity. Many times, complications overwhelm us and knock us to our knees.
I always refer to our times of great struggle as a sea of chaos. It is unmanageable because I have no control over when a spontaneous bleed may flair up, and no plan for when on an exciting outing — and bam! — my son hits his head. We give up our plans and spend the next hours, days, or weeks in the hospital. The feeling of being out of control is an awful sensation. Sometimes it seems like we will never again know how to feel normal.
The saving grace is that we have access to an excellent hemophilia clinic with a fantastic healthcare team. My family learned that although we may not have an instruction manual, our doctors have helped to form a road map regarding treatment and critical information, which empowers us to manage the illness. The relationships we develop within our community are a lifeline when things appear to unravel. It is nice to hear from other people who know my family’s struggle because they share similar experiences. We breathe a sigh of relief because we realize that we do not live in a vacuum, alone in life’s challenges.
As a caretaker, it is easy to become overwhelmed and feel like we are entirely alone on the journey. In our anxiety, we miss opportunities to bring balance and wholeness to those we love. “MacDonald the Younger” often laid with unbearable pain, screaming at the top of his lungs because of complications due to a bleed. I was powerless to stop the problem, but I stopped and took a deep breath and sang to him or tried to play games to take his mind off his pain. By staying with him, we both learned a valuable lesson. He discovered that he was not alone, because he had me right beside him. I realized that my love for my son yields more passion than I could ever imagine I possessed. Together, we depended on one another to get through a time of difficulty.
As caretakers, we get to share in the highs and lows with our special loved ones. We stand as witnesses to their lives, assuring them that they matter, no matter what the situation. We also let them know that they are more than patients with a disorder. They are complete human beings who are multifaceted and sacred to us, and so we hold them close, assuring them that there is nothing more important than their happiness.
I learned I would never use an instruction manual because the best part of the journey is experiencing life with my sons. Sometimes we drive on a straight path and handle medical issues quite easily. Other times, the road curves with sharp turns and hidden twists, leaving us breathless and unsure of where the way ends. That is OK. We are in the car together; that is what counts.
Hemophilia is a part of our world, but it is not the only facet of our lives. We live to have grand adventures, sail uncharted territory, laugh with one another, and exude incredible joy. Sometimes we forget that life is more than a diagnosis. It is the legacy that ties us together and reminds us of the essential gift we share.
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, and are intended to spark discussion about issues pertaining to hemophilia.
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