Here I sit with my disabled son. I love him and yet, I’m frustrated to the brink of a primal scream. I know, I should be ashamed of myself. Not everyone can do this. This job that I have without monetary compensation, but lots of spiritual reward.

I’m thankful for his delightful demeanor. He likes to laugh and play using my hands to clap. He seems to be happy all the time, even when he’s sick. He gets sick often. With music playing, he bops up and down with the rhythm of the song. He’s feeling better after having a miserable week of refusing food, drink and anything fun. His ear infection seems as though it left, but I’m still required to be at his side.

He’s weak from not walking. Watching him all night has left me drained and tired, ready to use the hard wood floor as my bed and pillow. But I hold off and wait for the opportunity to have someone else watch him while I close my eyes for moments at a time. My hope for sleeping at a normal time has slipped through my hands as I receive a phone call from the night nurse. She can’t make it tonight. It shouldn’t matter. I usually work two nights and two days in a row, but it does matter.

Maybe it’s because I was looking forward to a lost opportunity to sleep for more hours than the typical four. Or maybe it matters because the five consecutive years of  his needs have escalated to a cliffhanging level.

Irony can be a humble teacher because as of this day (4/18/21), I am the official night nurse. I have all seven nights to watch. My night nurse is now the day nurse. Life has a funny way of teaching us to appreciate the situation present because life happens.

Progress comes in many forms. While this was done hand-over-hand, he gestured where to place the stickers. He pressed them down.


Update 1/4/2022

Guess what? Life has a funny way of giving what you need, not what you want. Thanks to this Covid-19 Pandemic, I am the sole nurse. I am now the soul nurse. He and I are closer than ever. I understand him better than ever. I can understand his trying to speak. He is forming sounds! He is communicating more than ever. Could his brain be rewiring? Maybe. I’m not a scientist or neurologist, but the evidence is there. He can communicate. The trick is to learn his language of communication.

February 21, 2022

Happy birthday to my dear son! Samuel burst into this world eager and early; two plus months early. He hasn’t stopped learning. His creativity is sparks endless opportunities for new endeavors.

As he starts his seventeenth year, his endeavors will be larger than ever, but his success will be that much greater. He is motivated to succeed.