Today I feel empty.
I could lie and say that everything is okay. But I’m realizing that I do that too often.
I admit it, too often I write about the mountaintops.
So today I write about the trenches.
Yesterday I had one of my quarterly meetings with Zion’s ABA therapy team. For years, I left those meetings feeling inspired. Proud.
But yesterday, not so much.
The reality of Zion’s future is becoming just a little bit too real.
And I don’t wanna.
I don’t wanna think about battling another giant insurance company.
I don’t wanna think about trying to transition Zion back into public school yet again…just because people behind an underwriting computer screen who have never met my son say that’s where he “should” be.
I don’t wanna think about my beautiful baby ending up in an institution because insurance companies won’t do what is right and just pay for the therapy that helps these unique and worthwhile children and human beings.
So last night after somehow miraculously making it through my work day without sobbing for hours on end, I picked up some Chinese takeout. My parents took Zion for the night. And I headed home to watch scary movies with my teen daughter.
She broke out her chopsticks and tore into her shrimp fried rice, and turned on an episode of Criminal Minds. Fine with me. I’ve seen most of those, so I thought…”this is good…mindless…no need to pay actual attention.”
But the episode caught my attention. Because it was about children.
Two crazies had been kidnapping children for a decade, and keeping them in their basement. The useful ones who behaved were kept, the ones who acted up or out were killed. One of the boys had been kept alive for 8 years. At the end of the episode, 3 of the living children were reunited with their parents, while the parents of the other 8 deceased children were left with nothing but the devastating news that their children were gone forever.
I was sobbing.
I mean Steel Magnolias, Beaches, and My Life all rolled up together sobbing.
If you’re a parent, you know. Once you have kids, you immediately identify with the parental character.
I was wrecked. Literally crying out loud.
At one point my daughter looked over at me and said, “Mama, are you okay?”
I could barely speak I was crying so hard.
I finally choked out, “You will only understand when you become a mother.”
She knows me so well. She replied, “But you’re not crying this hard about Criminal Minds.”
So I cried harder.
She just let me sit there and sob for the better part of an hour. Without me even asking, she turned the TV to something lighthearted and she just sat there in silence while I cried. Finally, once I stopped sobbing she said, “Is there anything you need or want that I can get for you?”
I just shook my head from side to side.
But I thought about that statement all night.
Yes, there is something that I want.
There are many things I want. But I’m not sure you can get them for me.
I want to know that Zion’s future matters to someone else besides me.
I want to know that insurance companies are going to choose to do what is right for the 1 in 26. And when they don’t choose to do what is right, I want someone bigger and stronger than them to come and whoop their arse and make them do what is right.
I want to know that my sweet daughter is going to get married and have a family and a life, and is not going to be closed off and walled up like her mother. I don’t want her to have to spend her life caring for Zion if something should happen to me. I want to know that Zion is going to be taken care of to my standards once I am gone.
I want my friends and my social life back.
I want my parents to live forever.
I want a sweet and silent type husband who reads and cooks and knows that I’m a mess, but still loves me madly and understands that sometimes I just need to be alone.
I want to come home on days like today to a living room full of people who were at Rock on for Zion and the Old School Charity Group event two years ago. I want them to sing Love for Sale and laugh and hug me tight and tell me that everything is going to be okay.
Because it is not my nature to ask for that. It is my nature to come home and send everyone else away and work through the pain and anxiety on my own.
But no man is an island.
I certainly try.
And love for you to think that I am.
But I’m not.
I’m tired. Tired of being scared. Tired of losing hope.
Tired of being the strong one.
Tired of fighting.
Tired of hustling.
I just want to ride the merry go round for a minute while someone else beats up the playground bully.
Zion is 12 now. He is a wound-up, screaming ball of hormones most days, and from what his team tells me, it is only going to get more intense.
I try to imagine sending him back to public school.
Land of noises and smells and boobies. All things that Zion can’t handle and loves to handle, if you know what I mean.
I think of him trying to sit still. And failing. And consequently getting in trouble. And then stripping naked. Or peeing on someone. And then getting strapped in a chair….
and I’m done.
I can’t think about this today….I just can’t.
But I must.
“Yesterday is gone, tomorrow has not yet come. We only have today, let us begin.” -Mother Teresa