web analytics

Come to my window…

Written By: teamcharliebear - Jul• 23•14

image

“I would dial the numbers just to listen to your breath. I would stand inside my hell and hold the hand of death. You don’t know how far I’d go to ease this precious ache. You don’t know how much I’d give, or how much I can take. Just to reach you….”

These words echo in my head. I’m living a life of eternal epiphanies thanks to my son. At least that’s how it feels. Since the day I woke up and started attacking this diagnosis it’s been a whirlwind of realizations.

The day I “accepted” autism as our reality.
The day I decided I needed to learn about it and do something.
The day we found help and direction.
That one day, two years ago, that this Melissa Etheridge song took on new meaning to me.

I was driving him to camp and listening to my iPod. He was going to camp because we were afraid his recent hospital stay had regressed what little progress we were beginning to make at our therapy center. It had taken two years after his diagnosis to even get treatment, and he was almost out of reach. So withdrawn. This camp had to work. Something had to…

I’ve always been a fan of sister Etheridge, but that day it was like hearing the lyrics for the first time. They meant something completely different now. I looked back at the big baby blues in my rear view mirror. I could see he was smiling as the light danced across his eyes from the summer sun. “They look like pools” I thought to myself.
“I love you, Charlie….” I always waited just in case, but he didn’t respond. “I know you love me too, baby. You’ll tell me when you’re ready.” …. I hope.

“Keeping my eyes open, I cannot afford to sleep. Giving away promises I know that I can’t keep. Nothing fills the blackness that has seeped into my chest. I need you, in my blood, I am forsaking all the rest. Just to reach you…”

Somewhere inside myself, I made a silent promise. I will do whatever it takes to fix this. Even if I can’t cure it, I will make it better. Somehow. I didn’t even realize it then, but I waged war. Against everything! Insurance, disability, autism! I would fight it all until we were the last ones standing. Something will make this better. Something has to.

Though our current state of insurance is up in the air, we won round three in that and the disability departments. He was in all kinds of therapy and has been to three summer camps in a row. He always makes great progress at camp, but will it be enough? Am I doing enough? What about seizures that can be undetected to the naked eye, and all the stuff you read on food allergies compounding symptoms? Am I making him worse? Could eliminating some of the symptoms that complicate his life really be possible? You always hear about the window. The early intervention window of opportunity to reach your child, but had we missed it completely? I gotta sledgehammer somewhere…will THAT work? I’ll make one damn it! I had a lot of questions, but never the insurance to look into them. That changed this past year and we went to both a neurologist and an allergist.

The neuro decided not to do an EEG because he didn’t suspect he was having them. It would be “unnecessary torture”. He just put him on a medicine to see how he reacted. Things have not improved.
The allergist was just yesterday. He didn’t test him. He gave me the blankest stare I’ve ever seen. He paused and asked me, why I was really there.
“Why? Because my child has nonverbal ASD and can’t tell me what he feels. I don’t know if he is allergic to anything, and what about food allergies? He has a poor diet, and no, I’ve never noticed a reaction to food or anything, but I just want to know. If there’s something I can improve here…ya know? I am not looking for a magic fix but something has to make it better, right?”
I couldn’t believe I had just said that. I know how I must sound, I realized it right then. Suddenly, I wasn’t in that office with a picturesque window overlooking a garden. I was in that cold white room with that doctor five years ago. I braced myself, I knew what the sad look in his eyes meant. He paused a moment and said, “I can’t give you what you’re looking for. This isn’t an allergic reaction. If he had food allergies you would know it by now. I. Can’t. Fix. This.” I smiled and said “thank you for your time” and began packing his backpack.
I didn’t talk much on the way home. Thankfully, William was driving because my mind was anywhere but the road. “I’m sorry” I finally mustered. “I’m sorry for putting both of you through this today. I promise, no more unnecessary doctor appts from now on.” He assured me I was doing what I needed to do as a mom, and I had no reason to be sorry for anything. He said we all needed to be there to hear it today…I needed to get to the conclusion that I was doing everything I could. Still doesn’t mean I can “fix it”, and it’s ok. We would get through it…together. I honestly didn’t know I was still trying to cure it. I guess I was though. If I wasn’t really looking for a magic spell to change this then hearing I can’t wouldn’t destroy me. Would it?
Autism acceptance. I reckon I’m still a work in progress in that department myself. My acceptance comes and goes where ASD is concerned. I accept that Charlie is my son, and I will spend the rest of my life making sure he is as “ok” as possible. I will love him. That’s all I can do…so it seems.

“I don’t care what they think. I don’t care what they say. What do they know about this love anyway?”

You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

2 Comments

  1. John Zhang says:

    Thank you for sharing, CharlieTeam. The fighting will continue. Now that you have a co-pilot who can help guide and also fight with you. Thank you for your encouraging words and a reminder for us to do a better job.

  2. Kelly guy says:

    Thank you for sharing your journey with us. Maybe one day he will find the window but if not he knows you’re always around with the sledge hammer to make another way

Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>