The other day I called my husband at work, my nerves frazzled. Sean was having a tantrum for no reason that I could think of. If I don't know why Sean is upset there is no way to talk him down, to give him the peace of mind he so desperately needs. He spirals out of control until I can't discern any useful language. He grunts and screams, his arms and legs flailing, completely frustrated. I sent him to his room where he stormed off, yelling and crying and falling to a heap on his floor like a pile of laundry.
Add to that the toilet in the kids' bathroom wasn’t working properly. It kept running and filling up with water and the shut-off valve was intent on ripping off the skin on my palms as I tried to wrestle it shut with not much success. I couldn’t keep it together. It was Sean’s third tantrum and it wasn’t even noon. I was afraid that I was going to lose it -- scream and cry just like him and knew that if I did anything like that, the situation would be completely unmanageable.
After I sent him to his room, I began shutting all the windows to keep the hysterics contained to our home. I went down to the laundry room and paced back and forth taking deep breaths and covered my ears in an attempt to block out his yelling and screaming.
Then the thoughts came to me, crawling in my head, making the sadness almost unbearable. What is the point of this? Why does he have to suffer? Why do we have to live like this? I realize it’s pointless. It’s entering that dark black hole, circling the rim, then spreading arms wide open and falling forward into nothingness -- and who knew nothing could feel like a thousand pin-pricks. I called my husband and said plainly,
“I cannot do this anymore.”
My husband is having a stressful time with his work. His only employee gave him notice and he’s scrambling to fill a vacancy that he really can’t operate to long without. His wife can’t hold it together anymore and he can hear the not-so-faint sounds of his hysterical son in the background.
“Hang in there,” he says but he knows whatever he says will not be the right thing to say. In fact, he can’t win for losing.
“Hang in there?” I say, quietly seething. Not so much at him but just at everything. “I have been hanging in there for the past six years. Something is going to have to give.” '
Days like that are hard to balance in my weary hands. Like a heavy pane of glass, teetering in my tight grasp, every muscle cramped holding it steady so it won’t crash into a thousand tiny silver shards.
Sean eventually calmed himself down. He has gotten much better at this. When he came out his eyes were swollen from crying and his breath was quick and shallow.
That evening, we headed to our neighbor’s home. She is lovely and kind woman who has offered to have Sean be a part of a childrens’ theatre group that she teaches during the summer. This group is made up of seven neuro-typical kids and Sean. It was the debut of their play that they had worked on most of the summer.
I had put on some mascara and lipstick, pulled my hair back trying to hide the stress of the day. The room was packed with kids and parents and I was soaking with sweat, so afraid Sean wasn’t going to be able to do it.
He did it. Just fine. He had two small parts where he danced with the other children. His excitement was palpable. He do-see-doed with another little boy and he was perfect. My eyes were stinging with tears and I couldn’t stop them once they started. I have never felt such a surge of love for him as I did watching him with the other children. In the last song he danced with a red scarf, tugging it through the air, the gauzy material floating like a dream. He knew what to do and he was doing it. He had transformed in front of me -- not the autistic boy in his own world but any boy in a bigger world. He was accessible. It was a beautiful sight.
When the play was over I met up with my husband outside. He smiled at me and I could see he was overcome by the moment.
“He did great.” he said. It was the same look he had when our older son outplayed an opponent in hockey or lacrosse. He was proud.
I must have looked crazy. My face all red and wet with tears, I had an uncanny resemblance to Alice Cooper--my mascara puddling on lashes and cheeks. I should’ve known better than to put on mascara. When I found Sean, he grabbed my hand and he was back to his usual hopping and pinching the other kids. When we walked home he looked up at me and said,
“You sad, Mommy?” worry creeping into his little voice.
“No, Sean, not at all,” I said, my breath choppy, overcome with such a great deal of emotion. “I’m just so happy. So happy that you did so well. You were awesome, little man.”
The truth is, I saw my child in a different light. He was brave and eager, not afraid. He kept asking, “Is it my part, yet?“ his heart thumping against my hands as I held him back.
"Almost, Sean. Almost," I said rubbing his tight shoulders.
Earlier that day, in the heat of the battle, I questioned what was the point of this life and what lesson was there to be learned. By evening, my face still flushed, I came to the realization that despite all the challenges, this life of mine, these children of mine, this family of mine are meant to be. They are all that matter. It’s not something I can put into words. It was a profound and certain feeling -- something that makes me less afraid and hopeful for better days ahead.
Sam Smiles Project
1 month ago