I don’t think it is the first time that I have felt this way but it definitely ranks as one of the most memorable and most painful of my life. Watching someone die is tough. Watching a child with a disability die slowly is indescribable.
These days his eyes are filled with sadness and his lack of energy is understandable. The four ounces I fed him today did nothing but prolong the inevitable. An hour or so after I finished feeding him he coughed weakly a few times then spit out a handful of blood onto the chux cloth beside his chin. I held the paper lined plastic for him and watched the fear grow on his face. I could almost hear him wonder out loud whether this was going to be one of the horrible retching episodes followed by painful coughing and aspiration, or a quiet almost eerie scene that could possibly go unnoticed in the average PMD classroom.
The small puddle of blood didn’t look like much but I knew that it was indicative of a larger problem looming inside that would eventually consume his frail body and wither his spirit as it had over the past several years until eventually there would be nothing left with which to fight. I’ve tried so hard to be strong and the two additional adults that serve this class work daily and diligently to maintain a sense of realism and support that I feel will be the source of our social energy that will see us through. But on days like this I’m driven to tearful emotion as I consider the day’s events and what the future might possibly hold for us all.
I can’t really describe our relationship only to say that it is so very close. Closer than a teacher should ever allow herself to get to a student. But over the years I have found that it is pretty difficult to change someone’s diaper, clean up vomit, and rock them to sleep in your lap, without developing some sort of feeling. I think it would go against all sorts of natural design if I didn’t.
We were destined to relate, to try and make sense of our short time together. I knew it from the moment he was wheeled into the room and immediately cried at all of the overwhelming stimulation that was gently attacking his immature nervous system. Though we tried to prepare him for transitions. A simple thing, like turning classroom lights on and off, was enough to trigger severe neurological and muscular reflexes.
Mealtime via a PMD has always been a source of irritation for him. Rarely did it ever proceed as a typical feeding should. It was often accompanied by reflux, coughing, aspiration and nausea that seemed like it would last until it was time to eat again. Even with all of the issues surrounding his existence, he always managed to smile and laugh especially at the adults in the room. He would always attempt to position himself in such a way as not to miss any of the perceived action in other locations in the room. This natural curiosity, sense of humor and brave spirit was enough to endear him to anyone who took the time to get to know him better.
Nothing ever came easy to him. Things like breathing, digestion, coughing, sleeping, rolling over, searching for and finding that familiar voice that would comfort when things were really bad.
But his persistence and gratitude for the small ways I’ve helped, has taught me many things. I’ve learned not to take so many things for granted, that in the grand scheme of things our time here really is short, that depending on others is quite necessary at times and is something for which we should never be ashamed, that you can have a really good friend and never say a word to each other. and I’ve learned to always take time to do my best each day for it might be the only chance I get.
For these special lessons I am thankful my student that is also my teacher. There is no earthly lesson plan for what remains to be taught. The only prerequisite is a heart willing to learn.
Recently I’ve been on a search for the answers to many questions. I’ve examined my head and my heart and tried to know God’s heart in this situation and if nothing else I can say that over this I have no control. I have no way to intervene, no game plan, no short range objectives, no long range plans. I am helpless, utterly and completely at the mercy of God’s perfect plan.
I guess sometimes we must be brought to that rude realization before the spirit is able to speak. So here I am, waiting and listening. Wanting so much to see an end to his suffering, wanting to have some rational explanation, wanting to make predictions and give direction.
There is no end that I can see, no explanation, no predictions or directions to give or follow, only the haunting lyrics to a song that seems as if it were written just for me and Biscuit:
“You gave me wings and made me fly
You touched my hand I could touch the sky
I lost my faith; you gave it back to me
You said no star was out of reach
You stood by me and I stood tall
I had your love I had it all
I’m grateful for each day you gave me
Maybe I don’t know that much
But I know this much is true
I was blessed because I was loved by you,”
* Stories From the Heart is an ongoing series of user contributed heart warming stories, that shine light on the Autism experience.