Sunday, July 8, 2012

Etch A Sketch

I will never forget. It's a moment etched for eternity. No amount of sand and vigorous shaking will ever dislodge the image. I was doing the dishes, and rambling on about our next potential plan of attack in the world of brain injury. With the gentlest of eyes, Dave looked at me and said, "you know, Aviana probably won't be living a very long life. Are we really going to want to look back on these years and realize we put her through one therapy after the next? Maybe we should focus more on her happiness, and the time we have left with her."

No dam could have stopped the amount of tears that spilled forth at that moment. I'm not sure if I was in some sort of denial, or what. I have always felt Aviana wasn't going to live a long life, but actually hearing those words aloud hurt my heart in an indescribable way.

I think it was a culmination of so many things at once; the loss of the old Aviana, the realization that the program didn't work, not knowing which way to turn with her at the time, feeling we were way too young to be having these all too adult conversations, watching this slow, yet apparent demise of the new Aviana, knowing that we were going to lose this new little girl as well, and now talking about making the best life we could for her under these circumstances. It was all too much at one time, and in one moment. The levee had but no choice to bust wide open. Poor Dave...

But he was absolutely right. The months leading up to that moment were absolute mayhem for me, as I was swirling in the sea of brain injury and recovery. I am the queen of, "go with your gut," yet, I was doing anything, but. You see, as we were heading off to The Institute for the first time, I told Dave, "This is it! If this doesn't work, that's it. Mark my words. I'm not going to be one of those parents who run off into every single type of therapy, and cure. We are doing the most extreme program, and we will do it 100%. If she doesn't respond, then that's it, we will have to come to terms with it." We agreed. We figured, if she didn't have enough brain to work with, then she didn't have enough brain to work with.

But then, when it really happens, and it really comes down to it, and your child doesn't respond, something funny happens - you have to sit and wallow in the sad and restless unease of it all. And then, as if that's not bad enough, the worst comes knocking... the what if? What if there's something else out there? Something else that she will respond to.

What if her brain didn't like The Institute program? What if her brain is screaming, "Stem Cells, you idiot! I want stem cells!" What if it prefers a trip to Costa Rica...or Tijuana for them? Maybe her brain will respond if she is amongst people who look more like her. Maybe we can ask some Guatemalans to meet us there. Then your mind really goes off the deep end, and you think maybe you can find her foster family again and they can join you and she will respond to them. Maybe they can speak Spanish to her just like when she was a baby. Oooh I know, simultaneously while she's being injected with those cells....that's it, it just has to work! Or maybe, they should put me in a straight a heavily padded room? I don't know, just a fleeting thought. Or, what if Avi's temperamental, little brain is an animal lover like me, and wants to do horse therapy? Or what if it wants Anat Baniel? Yes, Anat. Maybe it would respond to a gentle touch, rather than the rigorous throws of The Institute exercises? No wait, what if her brain wants to go really international for therapy? Russia. Really brain? Geez. You really are high maintenance, aren't you?!? Or what if Avi's brain is superficial and shallow and is trying to use us for a free trip to the Napa Center in L.A. Maybe it's trying to escape to spy on the celebs?

Who really knows? I can't figure it out. Your guess is as good as mine. If all these super smart scientists can't unravel the mystery, how the heck am I to?

And just like that, you quite suddenly identify with all those other parents you saw. You find yourself on the computer, night after night, at 3 am doing late night...into the wee hours of morning searches, and understand the chase of therapy after therapy. You quickly become one of them.

But the truth of the matter always go back, back to your gut, and you know...her brain is just too hurt? And we know the truth, it is. It's just the cold.hard.fact. After a year on the program, I dragged it out of our advocate. Do you remember? The bottom 5%. The worst 5% they have worked with. The bottom of the barrel. Our kid...just too hurt. We heard it from the doctors, and that is to be expected, but once I heard it from them...I knew for sure. I mean, I felt it in my heart after six months on the program, but to actually hear it...that's a different story. I'm seeing a pattern here, are you? So if that's the case, and as always, we are just banging our heads against a wall, just running up hill and in circles, what do we do?

We contemplated it all and almost acted on much, but after what Dave said that night over the suds in a bucket, okay we don't wash our dishes quite like that...but after that, we might ride the horse, but only because Aviana might like it.

From here on out, we are being guided solely in the direction of what makes her happy, and what keeps her body in good, working order. That doesn't mean in good recovering order, this means in our best efforts of avoiding deterioration. And this was what lead us to our decision on starting her in school, and other things I am still trying to tell you : )

Dave is my brain. He keeps me grounded and logical. I had kind of a false sense of her exact longevity. I never thought it was going to be truly long, but definitely longer.  As you know, we both learned otherwise with her recent unexpected trip in the hospital.

I definitely needed to hear, out loud, what Dave had to say that one night. As hard as it was, he knew I needed to hear it. Those words have actually put our family on the perfect path. I couldn't have realized it at the time, but they have set us free, and I thank him for that!


  1. I undertand this. 100% & completely.

  2. how could you not have all those what if's, thats what women do re hash things over and over and over. I"m glad though that Dave could help you back to I guess the reality of it, it is all so crappy, but being a horse person and volunteering doing therapuetic riding I"m sure she would love it. I love that you are doing what she would enjoy now I think its wonderful, make what life she does have fun now. but boy does all that suck.

  3. You two make the perfect parenting team! There are so many things I love about you guys, but I think what I admire the most is how you got to Acceptance. I know so many parents who live in anger, at the doctors, at the therapists, at the school people, at the world, all of whom are there for their child if they could just see it. However long Aviana's life is, it's a happy one where she is well-loved by so many people. That's a lot, I think.

  4. I'm so happy that you & Dave have each other. My husband is my brain sometimes, too, which does come in handy :-) Months or years of fruitless therapy doesn't equal happiness for any of you. You & Dave & Avi gave it everything you had. I hope you can find some rest in that, that you'll never have to wonder what if we had done The Institute program? You have made the right decision.

  5. Realization=hard pill to swallow. But once swallowed, there is a lot of peace and acceptance.