Life in the hospital can overwhelm us and leave us beaten down, as if we fought a war to end all wars. We exist by preparing for the next nurse, technician, or doctor to enter the room to check on our loved one.
In our case, “MacDonald the Younger” suffered spontaneous bleeding into the knee or ankle, which caused hours (sometimes days) of unbearable pain. Many times, the highest doses of morphine could not touch his pain. My super guy screamed and moaned for a long while, often finding no relief until much later.
We found rest in the moments between bleeds. I am talking about the precious instances when hemophilia no longer controls our lives — when, in the eye of the storm, we can take a few moments to breathe.
My son is a big gamer, and he loves to play video games with his friends. The hospital had a gaming console and often sent it to his room. The games helped take his mind off the stabbing sensation he felt when an active bleed occurred.
I played right along with him. We tried to race cars faster than the other, solve crimes, or perform any other feat that needed to be resolved directly on our screen. I counted the moments we took time together as sacred, something set apart. Hemophilia may continue to stand in our way, but it will not come between me and my boy. Mario Kart kept us occupied.
We who deal with chronic illness know the feeling of a Category 5 hurricane, the strongest of all storms, blowing through and wrecking the landscape of our family lives. Through no fault of our own, we must turn our focus to the disease or disorder and fight its horrible wrath with everything we have. We must stand up with our loved ones and let them know that we will never leave their side. Hopefully, the storm passes, and we have respite for a little while.
During the quiet moments after the storm, I have an opportunity to turn our attention away from the raging tide of hemophilia. In this quiet time, the bonding of hearts and souls overcomes the noise of pain and chaos. I have a chance to show our loved ones how to find rest — not just physically, but spiritually and emotionally. My son discovers the deep love I feel for him. We laugh and play, raising voices of joy that can defeat the cacophony of pain.
Sometimes, these special occasions last for a short time, but there may be long periods of rest. Life may appear to return to a schedule, and for a while, our souls seem to breathe sighs of relief. My boy focuses on being the world champion of his newest game. He focuses on school issues and how he may be a contributing member of our home. Routine becomes our favorite word. We live this way until the next storm comes, and we find ourselves facing another crisis, another bleed, another hospitalization.
Early in our diagnosis, we learned that life produces many storms that leave us breathless and afraid. The common factor was the love we shared for one another. Nothing can overpower the importance of connection, born out of a place that begins very deep in our souls and rises to provide that very thing we need: our family.
Hemophilia may continue to show its ugly head. It may overwhelm us and leave us feeling defeated, but it will not win. The ravages of a bleeding disorder will never claim victory in our lives. MacDonald people are much tougher than a medical issue because we have one another. That, my friends, is more than enough power to overcome any storm.
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.
We are sorry that this post was not useful for you!
Let us improve this post!
Tell us how we can improve this post?