So last night after his third Grand Mal of the day, and second fall that thank goodness didn't result in anything busted out, open, or broken, I had a heart to heart talk with him. Typically after such seizures he is knocked out, eyes closed, asleep. But yesterday he was knocked out, but awake. After his daddy lifted him in bed and we got him settled, I could do nothing but just lay there beside him, hold his hand, and cry. There was no need to rush to the computer and look up yet more seizure research. I've read them all. There was no need to call a Neurologist for more medicine. No medications work. There was no need to even just sit and bang my head on my desk in thought about what I could do, what more I could try. I've banged my head more than senseless over the years. I am thought-out on what more I could do, what else I can try. I call myself a "Thinking Mom" because I believe in the revolution they wish to create, are creating, --but quite frankly I'm tired of thinking. Where seizures are concerned, I'm all thought out anyway.
So all I could do is lay there beside him and cry.
He laid there awake and I would look at him and just marvel at him. At all he's been through. Yet I was the one crying. How absurd. So then I started talking to him. We have had some really good heart-to-heart talks over the years. But this one was one of the more raw ones as far as my side of the conversation was concerned. Not that there's a part of the conversation that's his, unfortunately. So, I just point blank told him I didn't know how to help him. I apologized to him over and over. I told him we have spent all we had to spend, we've tried everything we know to try, we've done all we know to do. I told him I didn't know what else to do for him. I didn't know what to do to prevent the seizures, or prevent how they sometimes cause him to fall and get hurt. Unless we moved to the moon, there would be no way to seizure-proof any house we lived in. That unless he wanted me to bolt a helmet to his head, there would be no way he would tolerate wearing one. Just raw honesty. I told him how much I loved him and how much I wanted to help him but just simply didn't know how. I told him I was at such a loss. I wanted to apologize for failing him in that regard, or at the very least apologize for not succeeding in seizure cessation. But I knew that failure can only happen if you never try. You can try and not succeed, but the only way to truly fail is to never try. I at least was successful in knowing that. And in trying the very best I could. And then I asked him if he would, next time he was in the presence of his Angels if he would maybe ask them for me what more I should do. I asked him if he would when in the presence of the God I know he sees, if he would maybe ask him to help me and his doctor to help him. I know that my prayers and the prayers of so very many have been answered in us finding the doctor we now have, but that doctor has a tough case on her hands with my Brandon and I begged Brandon to please ask God to impart some divine wisdom to her.
It was a really sweet time of just laying with Brandon and being so very open with him. He had been at camp, we had been on vacation, -- it had been a while since I had some time to just be with him. As always, so very hard that it was only because of the seizures that I had such a captive audience in my non-stop, non-quiet son with autism. But there he still laid on the bed beside me. Perfectly still. Perfectly quiet. Perfectly awake.
My very own perfectly created son. His innocence, transparency, and purity as breathtaking to me as his autism, seizures, and GI disease is maddening to me. To live in "Life with Autism" is to try to find that balance between both. How to eradicate one without losing the other. Understanding that will never be understood by typical parents. I am Brandon's mom and I hardly comprehend it, let alone understand it.
After a while I thought about the pictures above. I took them on the Haleakala Summit just before sunset. We were standing on the top of that 10,023 foot mountain looking down at the clouds. Watching the sun set down through the clouds was surreal. I thought then, how much Brandon would have loved that. Being so very high. That's his main goal when outside, trying to climb as high as he can. A time or two it's been his main goal inside as well. We would often find him sitting on the top shelf of his closet. Standing on counter tops. Once, we found him walking across the half wall on the upstairs balcony that leads to a straight drop to the downstairs entry way. We now have bars across that.
I know now why Brandon loves to be up high. I know that I truly felt God up that high. What it must be like to be God looking down from the heavens through the stars, through the clouds, at his creations below. I said a prayer for Brandon, and all the Brandon's of this world. I know God hears my prayers no matter where I am, but I thought it couldn't hurt to be a bit closer to him so they maybe get there faster!
I don't know. I guess that experience in the "House of the Sun" as it's called - brought out a new vulnerability in me, and why I was just so open and raw with Brandon in our conversation. Truly, it is not anything that I can do, it is all about what God can do. Up that high, I realized without a doubt who is in control. And it wasn't me. God is in control. He can do whatever needs to be done for my son, according to His will and in His time. Standing that high, looking down through the clouds and realizing you are but a shadow, brings that out. Up that high looking down through the clouds, there is no yesterday, today, or tomorrow. There is simply this moment. This moment where you stand arms raised and heart abandoned. In awe of the one who gave his all. This moment where you know that there is no "hurry and answer my prayer" or "hurry and heal my son." But simple knowledge that He will. At any moment... That's what HOPEISM is.
But I smile as I also know that when he finally closed his eyes and fell asleep, and as I kissed his forehead one last time before leaving his room; where he was, who he was with ---
Was even higher.