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The 20 Minutes I Spent Lying on the Floor With My Son With Pelizaeus Merzbacher Disease

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I love my child and am constantly searching for ways to help him. But sometimes I fall into daily habit and routine while time passes by. It was early morning and my son, Leo, had finished breakfast. Leo is 2 years old, nearing 3. He does not walk, does not sit unassisted and struggles to belly crawl. He has a leukodystrophy, Pelizaeus Merzbacher disease (PMD). We must make sure he is burped and stays upright for some time before we lay him on the floor to play with his toys. This minimizes the chances of a choking or puking accident. 

black and white photo of boy on blanket

This morning he looked at me as if saying, “That’s it? You are just going to leave me here?” I put away my phone and decided to be late for work. This time I laid on the floor along with him. I mimicked his movements. I intended to see what he saw  world so vast and so different than my own. It was Alice in Wonderland in my bedroom. The small became big. Forgotten toys became his friends and accomplices. Sandals was not an exclusive beach resort, but a pair of his dad’s Crocs on the far reaches of his Earth. 

While on my belly, I reached the toys near my grasp, no further than an arm’s length. Leo tried to move an inch to get a hold of a shopkin that was left on the floor by his older sister. There was some pieces of litter, a half-empty eight-ounce bottle of water, a coin and a string dangling from his mother’s pink robe that hangs from the southeast corner of the bed. He tried to kick it with his feet. Four out five times, he was unsuccessful. The times he realized his actions create an equal and opposite reaction, he would marvel at what his perseverance accomplished. He would look at me proudly, and I would cheer him on. 

This morning I was extra silly with him and played without haste. This morning we crossed the boundary of dad and son to playmates. And it was wickedly fantastic.

My morning drive to the office and back in the evening throughout the years seems repetitive, an homage to “Office Space” and “Groundhog Day.” I enjoy the challenges and adventures that keep me hooked on cutting-edge technology, yet since having a child with special needs, that world seems inconsequential in comparison. This morning, in a modest bedroom, I saw my child’s world brighten by 20 minutes with his dad on the floor. He allowed me in, and I made the best of it. Time is priceless, mighty and impactful. It is the most precious bounty I can offer him while pressing for a cure. 

I kissed his neck and smelled his hair for the last two minutes of our playdate. He chuckled and babbled: “Amo.” The most transparent “love you” I have received. The one word that keeps me fully charged to battle on his behalf.

I believe in time it will be the unbreakable bond between parent and child that will at long last find the Holy Grail. I believe love will ultimately be the one that wins the fight against these diseases. It will be the parent and child who venture together to unknown worlds and risk their lives in the process so science can get it right, and that will save many lives. And for the many yet to be born, they will be their unnamed legends and heroes.

father and son

Originally published: January 29, 2016
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