Two and Five…

“Do you know when my birthday is?”

I looked carefully over at One-of-my-Own, trying to gauge why he was asking me the question. His eyes were clear and blue and for several brief seconds his face was smooth, his voice quiet. A reprieve from the violent facial and noise-making tics that had been relentless for a while now.

My first thought was that One-of-my-Own had forgotten his birthday. A deep gash of dread ripped through my heart. I recall a troubling day a month or so ago. He had been at his grandparents house, a place he knew well. With a bewildered expression on his face, he had asked, “Where am I?”

“Do you know when your birthday is?” I asked slowly, holding my breath. One-of-my-Own hadn’t started to tic again. In a rare moment he was able to answer my question without being interrupted by the snort, yodel, choke, and cough Tic and OCD combination that makes it impossible these days for him to complete a sentence.

“Yes mom,” he said calmly. “It’s May 24th.”

I breathed out a sigh of relief…

In the days that follow, my thoughts are often filled with what most would believe the unfairness of it all. The friend or two, that One-of-my-Own has had in his life are long gone. One grew up and hasn’t been heard from in a while. Another needed to move on. For there’s only so much that one who doesn’t live in the Land of A can take before deciding that it’s best not to ever find one’s way here again. It’s understandable…

I think about how, Outside the Land of A, people who know One-of-my-Own are living a different life. One more person his age is getting married, looking forward to a future with her new husband. Another with a baby barely a year old, is pregnant again, excited to be a mom for a second time. A third decides that the job he attended four years of college for, is just not for him. He quits to move far away to go back to school and learn to do something he loves instead. It is as it should be…

Four days go by…

I find myself watching him. There is no denying that the Tics and the OCD that plague him continue to get worse. He’s lost his attention to detail, and is no longer neat and clean. Unthinkable in ever happening, snot runs from his nose and he spits when he talks. I keep looking for something, anything… to help him. The doctors have no answers. Nothing is working. Autism continues to grab, snatch, and steal from his life. It is not understandable….

Today is his birthday.

He has a list of things he would like to do. He wants to go see a movie, play video games with his brothers, have a pizza party with cake, and spend time with the family that he loves.

But it takes hours to appease the demands of the Tics and OCD that keep his brain in a fixed state of rewind. Like a car engine stuttering to turn over because of a battery running on low, he can hardly get going. He finally takes a shower hours after waking up, his breakfast isn’t eaten until almost lunch, and he runs around half-dressed until sometime in the afternoon. It is not as it should be…

It is gray and white at the dinner table. Not the vivid in-color memory that those outside the Land of A, looking back through time, will remember of their birthday. The room is silent except for the choking noises of the Tics that One-of-my-Own cannot control. He doesn’t mention that he never made it to the movie, and he won’t be able to move pass the Tics and OCD to play video games with his brothers later that night. His choke and cough TIC makes it difficult for him to eat the pizza that he asked for and a neck TIC dips his face into the cake… frosting is now on his nose…

A look of understanding passes from one family member to the next. In the eyes that meet, there forms an unspoken agreement. The room’s silence deepens, time slows as we gather to the present. Those of us who love him are sad but determined as we quietly hold space for the moments of joy that for him fleetingly come and go. The flames will soon sputter and go out on two and five candles. But until they do so, we honor with One-of-my-Own, in the only way we know how, the day that he was born on…..

-Chris

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