Struggle

It is so hard to sit back and watch you struggle.

I know your struggle is yours.

I know all parents watch their kids struggle.

But your struggle is different.

This morning, after you spent an unusually long time in the bathroom, after a breakfast that was mostly not eaten, after you swallowed the horse-sized bright red gel caps and the rice-sized dab of medical marijuana oil that I give you to reduce your seizures, I watched you struggle to get your socks and shoes on.

I watched as you yelled at and fought with your socks. I watched you start to put your left shoe on the right foot. I corrected you, because you guys were going to be late to school, which would ultimately create more anxiety for all of us.

A split second decision to advise you. To help you. To watch you stop struggling, if even for a moment. Was it the right thing to do? Yes, because you changed the shoe to the other foot. And you didn't freak out about it. That's the catch, isn't it? Whether you'll freak out and start yelling at me and then I start yelling back because I really can't stand being consistently yelled at by you every fucking morning for nearly two weeks. The bully isn't bullying you anymore. Mrs. O is on top of that shit like white on rice. But you kept on about it for damn near a week after she said it was over. I know. I know you're slower to process. But fuck, dude. Stop already. Move. On. It's. Over. Please.

Thanks for letting me help you tighten up the velcro on your shoes and for letting me take your pant leg out of your sock. It's important to me that you look "normal" when you go to school. I mean, you look like any other fifth grader. Any other 11-year-old, who is 125 pounds and 59 inches tall. I've only got 7 pounds and 3 inches on you.

This morning, as I watched you struggle into your fleece and struggle to zip it up, with your well-worn dark green Bite Saber hanging from your neck, I started to silently cry because what will happen to you? Who will look after you? It does not fall to your brother. But it probably will eventually. When you're both grown.

Stop crying. First get them out the door, then sit down and cry. Don't let him see you cry. His anxiety will go sky high. And don't say "sky high" because he thinks it's funny and will start giggling and won't stop and he'll pee his pants. Shit. Is he wearing a pull-up? 

I watched you carefully walk, in the pouring rain, down the 10 steps from our deck to the driveway. I watched you, in the darkness of the early morning, as you loaded up in the truck, thankful you have the ability to fasten your own seat belt. The rain was so heavy your brother didn't roll down his window and wave for several minutes like he normally does. I watched from our enormous picture window and waved, like I do every morning, as Daddy drove away. My heart was heavy, as the red taillights disappeared down the driveway and the darkness of the grey day set in, the sound of the rain pounding on the skylights in the kitchen.

Then the tears came. The sobbing. The snot. The blubbering. The sadness. The regret. The guilt. The anger. The fear. The trepidation that one big seizure could eliminate all the progress you made. That too many little seizures are equally terrifying to watch. The constant nagging in the back of my head, and hoping that the "what if..?" never comes to fruition.

Invisible illness. Invisible brain disorders. Invisible struggles. 

It's ok, Mom and Dad. I get why you stay away. I get why you don't acknowledge Mom's brain disorder. It's intense. It's easier to ignore shit and hope it just goes away. But it won't. Living with and caring for a person who has a brain disorder is a struggle for everyone on a person's family.

My son struggles with basic things: eating with a fork, writing his name, get his shoes on the correct feet and zipping his fleece up. His main struggle: he'll always be five years old. Developmentally, my son, no matter how old he gets and no matter how long he lives; no matter how big he gets, will always have the brain of a five-year-old child. He may get to six; but I'm not holding my breath. He may end up regressing, which happens sometimes with autistic people. But, it can also happen because some fucking electrical storm in his brain makes it so, and ultimately, a seizure is more likely to happen and cause who knows what. I don't go there. ScareTheHellOuttaMe.com is not a place I choose to go.

Think about that. What would you do if your child was going to be five forever? I recently had a conversation with a community member who was lamenting the fact that she and her husband were going to be empty-nesters soon. I kept my mouth shut, because I really had nothing to contribute to the conversation. We will likely never be empty-nesters. Because you can't let a five-year-old child live alone. Or I can't, anyway. This isn't about me seeking support for him. I know about the resources. The ones that our current president and his fucking cronies are attempting to eliminate. I do not count on those resources to be there.

But it's a struggle. Everyfuckingday is a struggle. And it really hurts my heart.


If I could start again
A million miles away
I would keep myself
I would find a way

"Hurt"
Trent Reznor
1994