Almost every weekday morning, I load up our children in my scraped up Prius to drop A. off at preschool. We are usually just this side of late, having to do about twenty medical things first to get E. ready for the day. Naturally, we may or may not be wearing socks.
Before A. says goodbye to us and walks down the hallway to his classroom—his too big backpack halfway off of his shoulders, he often takes E.’s head in his hands, or touches her cheek. And when he’s in a good mood, he kisses her.
One day, when she didn’t join me for pick up, A. turned beet red. “I want my sister”, he cried. Then came the waterworks, the whole thing, a meltdown in the hallway. He didn’t lay down on the floor, but it was close.
I know some parents go on and on about the sibling love thing, but I still didn’t anticipate just how much they would adore each other.
E. is a bruiser. Yes, she looks like a sweet, smiling baby with a gap between her two front teeth. But really, she is part roller girl. Right upon seeing A., she high tails it over to head-butt him. Then she tries to tackle him. Each time he acts surprised, laughs with his whole body, and head-butts her back. After that I play referee, because I get worried about the tubes getting pulled out.
A. doesn’t know the extent of E.’s medical concerns, and Cedar and I do everything we can to keep it that way. He knows that she lives on the tubes for now, that they help her get bigger and stronger. He is certainly aware that she has problems with her stomach.
He doesn’t know about a lot of what happens around here. Like how we spent most of yesterday back at our old clubhouse (the hospital), E. throwing up so much in the hallway that a nurse approached us to make sure that she was okay. She had what is supposed to be a routine procedure to change her tubes out and, so far, it’s been close to horrendous.
We do our best to talk about things when A. is not around—things like medical decisions, treatment. Our sadness, our stress. This means that Cedar and I have some of our most important conversations over the phone.
When I need it most, I let my tears fall on the way home from the office, because I know that I can sob all the way until the highway exit off of 100. I’m not crying about work; I just don’t have much time when I am alone. On the side streets, I pull myself back together. By the time I walk in the back door, my face doesn’t let on about anything.
I’m not pretending everything is okay. Most of the time, I’m trying to live like it is, in hopes that it will become that way.
But A.’s still seen a lot. ER visits, of course, and also, just living with the retching intensity that is E.’s digestive tract. Sometimes when he’s mad he pretends to be puking, just to get my attention. He starts coughing and drooling and says, “Mama, I’m throwing up”. For some reason, it almost makes me laugh, even though it’s not funny. I guess because it’s smart and childish all at the same time, to make a bid for attention like that. When he does it, I just love him up, and act like it has nothing to do with vomit.
But we are not perfect, that’s for sure. Cedar and I get worn down. We get tired and then we get snappy, especially with each other. Even though we work to spare him, A. knows all about stress.
Our rabbi said that having a sibling with extraordinary needs will likely make him more empathetic. I hope so. I feel about empathy the way that some people feel about shopping or touchdowns. The more, the bigger, the better.
On Monday, I went on my lunch break to the DMV to get a disability parking sticker for the car. I also realized, as I was standing in line, that my drivers license had been expired for about a month (yep), so I got both errands out of the way.
Olive qualified for the long-term permit, the one designated for a person with a permanent disability. As the soft spoken staffer pinged her official stamp of approval over our application, I tried not to lose it. I practiced deep breathing. I tried to think of something light. I did what I could to focus on The Voice, and nice smelling pine trees, both of which are things that have a sedating effect on me. But really, I thought about the word permanent and I felt a kind of fear that I cannot explain.
And then, as I wiped my face with my sleeve, it was time for my drivers license photo. I hadn’t done my hair since I got up around 6AM, not knowing that any of this would happen. I think half of it was tucked nicely into a barrette and the other half was sticking out.
That’s how I roll and, really, I guess it’s how we all do.
Every day. Out of bed and into the unknown.