I am sitting and watching my boy experiencing freedom. Free from his wheelchair, free from constriction, and tightness and free from Duchenne – for a moment. We are in Miami, basking in the warm and humid weather, and my son is floating in the water light as air and is soaring. The sun is beating down on his smiling face, and the goodness of oxygen fills his lungs, as he holds his breath and dives down into the water. He is untethered to the limitations that Duchenne brings, and I am relieved and inspired watching him. He splashes around, moving his arms and legs, diving down like a fish, throwing a ball and finding complete joy in the water. I also am sad and reflective as I remember just a few short years ago, how he would swim in our pool at home and spend the summer days jumping off the high ledge into the deep end. He was so proud of himself, as he jumped all by himself competing with his sister and friends that would come over. We loved watching him, but we also were cautious knowing that there was a fine line between over-using his muscles to keep them fluid, and over-doing it which breaks the muscles down quicker. Now, at age 13, he can no longer stand or walk and his new form of transportation is a wheelchair. He can only get into the water if he is carried, and his joy of jumping in is over. But as I watch him now, he is still able to find peace in the water. I realize that the only place these boys with Duchenne can experience true freedom is in a body of water. They have freedom with their own bodies, they can play with other able-bodied kids, and can participate in summer activities. This is quite possibly the only place that they are can genuinely explore their God-given bodies and can be buoyant and lightweight, feeling fully alive as the heaviness of Duchenne dissipates. Whether they are in a pool, a lake, a river, or the vast ocean, they receive tremendous benefit and mind/body therapy. As the sun shines on their faces infusing them with Vitamin D, and the water; almost baptizing them; washing away their anxiety, they can explore the sea and the movement of their bodies off the land. They move freely twisting and turning their spines that are usually straight in their wheelchairs or beds. They can flay their arms and legs about, and dunk their heads below water, seeing a different perspective of life and away from reality. They are no longer categorized “non-ambulatory” or “ambulatory” and are equal to all fish and mammals since wheelchairs do not exist. The feeling of floating free must be exhilarating, and for a time, they feel peaceful, permanent, and unbroken. While the weather permits during these summer months, I intend to foster this type of freedom as often as possible and pray that the therapeutic effects last a lifetime.
“The ocean stirs the heart, inspires the imagination and brings eternal joy to the soul.”
“For whatever we lose (like a you or a me), it’s always ourselves we find in the sea.”
E. E. Cummings