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Another Day in Our Lives

After a long and stressful day at work, as I headed for the living room to tend to the excited dog, I heard the voice of my wife coming from our son’s room. With panic and urgency in her voice, she tells me, “Come right now! Hurry! Now.”

My son is sitting on the bed, leaning a bit towards the wall, having a seizure. His face is pale and his eyes rolled up so only the white part is visible. His hands and legs are moving in what looks like a repetitive motion. His whole body is tense and shaking. It goes on for an eternity, or about 3 minutes. When you see a loved one in that state, 3 minutes are infinitely long.

Eventually he relaxes and begins to act as he usually does. He eats a good meal and generally looks calmer than he has all day, possibly due to the exhaustion from the seizure.

This scene is by no means abnormal in our home as he has been having seizures for a while now. My son suffers from severe autism, and for the past year his seizures have become more intense.

On days when his anxiety is rampant, he might punch holes in the wall or break anything that can be broken. At other unfortunate times, he turns the aggression on himself.

It is incredibly stressful to find him with big bumps on his head and bruises on different parts of his body, and to see him continue to hit those bruised parts without mercy. It can be devastating not knowing why he is harming himself and not knowing how to make him stop without actually wrapping him in sheets and holding him tight to impede movement.

Then there are the times when he will begin crying for no apparent reason. It is the type of cry that is sure to make anyone who sees him cry also. It starts with an extremely sad expression, with him looking down. Then his lips begin to tighten in an attempt to contain it. Then he bursts into loud sobbing and abundant tears wet his cheeks. He looks down and then away. The sight and sounds make me as his parent want to burst into a million pieces and vanish forever. The pain is unbearable, but I have no choice.

I cry with him sometimes. One day after he stopped, I sat on the couch and let my tears flow without sound. He noticed and quickly ran to get a rag, and dried my tears. He stayed in front of me to make sure my face stayed dry but he said no words. He does not speak.

Jose Castillo

The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.

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