I love the months of October and November. Leaves change colors, and the air is crisp and cool. It also is the season when we take a moment to count our blessings.
I am referring to the things that bring us joy. Sometimes in our chaos with chronic illness, we may have moments when our response is, “Joyful, are you crazy? I am doing everything I can just to stay afloat.” We might have a difficult time standing still and catching our breath. Our anxiety is real, and our concern for a loved one’s immediate medical care must override everything else.
I know how the insanity of chronic illness feels. In a season that lasted several years for our second son, whom I refer to as “MacDonald the Younger,” he could not catch a break from complications due to hemophilia. He would leave the hospital, have a bleed into a target joint, then turn right back around and go into the hospital again, where he would stay for weeks or even months.
In the middle of it all, the thought of being joyful seemed like a pipe dream. We started down the “if only” trail: “If only my son would …,” or, “If only we could catch a break.” The cycle appeared to be endless.
One day near Christmas, my wife walked into the hospital room with a small fake tree with lights and other small decorations. It took us only a few moments to set everything up, which allowed us to briefly surrender to the joy of bringing familiarity to an otherwise stale atmosphere.
We exercised control and allowed ourselves to think of beautiful things. Yes, we were in the hospital, but we had control over our reaction to the environment. Our lights, candy canes, and other holiday items did more for our spirits than anything else could have. Our actions reminded us of the past and the promise of things to come.
In the middle of it all, joy led us to hope. It filled our souls with something that transcended anything we faced medically: the awareness that we are a family who loves and supports one another above everything else.
It is incredible how little trinkets and things can help us overcome the harsh reality of a chronic illness. Small pieces of things in our world hearken back to days when we laughed and enjoyed being together. Holding these priceless commodities in our hands gives us faith that tomorrow will be better than this day.
“But Joe,” you may say, “I put the lights and all the other stuff up in the room, and nothing is happening. I don’t feel any better. It’s not working for me.” In those times of heartache, my response to you is, “Keep decorating, and I promise you this: One day, you will place the lights in your hand, and when you do, you will discover joy. Ritual is a good thing.”
We have to hold fast to hope because sometimes it is all that we have — a promise that tomorrow will come, and we will know the good times again.
I know that some in our community struggle. I think 2020 will go down as the craziest year we have ever experienced. Sometimes our joy comes in long durations, sometimes it’s shorter, and sometimes it comes in quickYo moments. However these moments reveal themselves, acknowledge them and let them fill your soul with hope.
Every time I take a moment to discover beauty, miraculous things happen. It is up to me to take the journey.
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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