Wednesday, March 17, 2010

My Tuesday Afternoons

In my school program, I have to complete so many observation hours.
Usually it is fifteen hours per class.
This semester I have two classes that require them.
So a total of thirty hours for the semester.
It may not sound like much but of course most of them do not start right away due to red tape like fingerprinting and background checks.
Most must be completed by early April.
And the school teachers are hard to get set up with unless there is a connection already.
Do not even get me started on the lack of communication between me and the school teachers.

One of my professors gave the class a deal at the beginning of the semester.
We could volunteer with her friend's son instead of in a school.
We would be going to the child's home and working with him for an hour each week.
In exchange, we would not have to do the normal observation hours and we would not have to complete the weekly homework assignments.
Perfect, right?
Except this sixteen year old child is not normal.
He has a severe case of cerebral palsy.
I signed up.

Supposedly he is at age level developmentally but he is unable to communicate except for some grunting and some head movements.
He has a computer to communicate with his family but he does not use it during our sessions.
This boy can be lifted easily by one person he is so small.
His muscles have atrophied severely.
He is wheelchair bound.
He spastically moves his head, eyes, arms, and legs.

A group of four of us help him do some physical therapy exercises in order to help him belly crawl at the end of the hour.
Belly crawling may sound easy but we have to first warm up his hands.
Then deep pressure points on his upper extremities.
Then warm up his arms.
Helping him flip-over multiple times.
Then we use infrared on his legs.
Unlock his lower extremities.
Then in the last ten minutes or so, we help him crawl.
Maybe twice if he does well.
And sometimes maybe half.
Most days it takes the entire ten minutes to crawl about three feet.

It is an hour a week.
It is exhausting for me.
And emotionally.

Yesterday, I realized something.
Roger would have never even been half as functional as this kid.
Roger would have been exhausting.
And it would not be an hour a week.
It would have been 168 hours a week.

I look at this child's mother.
She is tired.
She is stressed.
She is aging way faster than she should.
Her entire life is her son.
She tries to be positive and gives so much to him.
But he requires constant care.

That could have been me...
Except as a wife, not a mother.
And as crazy and dark and horrible as this sounds, I am grateful.
Grateful that this is my life.
Yes, I would love Roger to still be alive and well.
But I do not know if I could have been that strong.
This mother strong.
I do not know if I could have dedicated my entire being to the lifestyle of a caregiver.

When Roger was dying, I wanted him to survive.
But he didn't.
And despite the worst week of my life, I lead a mostly normal life.

Thank you...


Crash Course Widow said...

You would have done it because you had no choice and because you loved Roger. It's no different from what people say to us--"I don't know how you do it"..."You're so strong"..."I could never do what you're doing," etc., etc., etc.

But I understand completely where you're coming from. As sick as it makes me that Charley died instantly and that he's not here, I have always been relieved, in a twisted way, that he didn't survive it, because it would have been impossibly hard--for him, for me, for our families. The Terry Schiavo case was running rampant in the last few months before Charley died, and at least I knew what both Charley's and my preferences were if we ever found ourselves in that position; neither of us EVER wanted to live like that. And in the years since Charley died and I've had time to absorb just how bad they could have been had he lived and been, basically, a vegetable, I can endlessly sympathize with Terry Schiavo's husband and "remarrying" and creating a new family before Terry had even died. I understand it completely...and like you, I'm grateful to have been spared a different type of nightmare...and I still wish Charley could still be here, whole, healthy, and alive too.

Hugs, my friend.

Supa Dupa Fresh said...

I had a vision of that before Gavin died, too. He was 20 years older than me. He was so weak from one chemo that he was in a wheelchair, and only 100 lbs. I was wheeling him to the doctor, thinking... if this is my life... I don't think I can handle it.

I couldn't have gone on like that. Fortunately he got much better before he got worse again, so I didn't quite have a nervous breakdown.

Hugs on these tough thoughts.



Jen said...

Your words resinate with me:

I look at this child's mother.
She is tired.
She is stressed.
She is aging way faster than she should.
Her entire life is her son.
She tries to be positive and gives so much to him.
But he requires constant care.

That is me now, that is my life now, I am that mom. While I understand how you say as crazy and dark and horrible it sounds......but you are just simply telling the complete and honest truth.

I too, have had to share my morbid thoughts in my blog. The ones where I can't stop thinking ....maybe it would have been better that my daughter had died that day, on the street.

Our daughter was on the threshold of death and we were ready to have to make the decision to let her go, but then things changed, they said we had to give her a chance. You know, because she had age on her side.

It has been 9 months and not too incredibly much has changed. I am so sad about this realization, I often times wish it were different for us.

I read your blog all of the time and when I asked if I could link yours to mine, I feared that if you ever flipped over my way, you may say, but her brain injured family member lived, she didn't die (honestly, I don't know you so I have no idea what you would think) but the truth of the matter is, I read yours and sometimes wish I were in that boat. I suppose what is meant to for each of us.

Life is so strange! The grass is always greener. No one can ever comprehend what we are each individually going through and nor should we ever venture to try, because we will never fully understand.

I loved this post, but it also made me so sad. For all involved, you and your loss, the mother you are speaking of and her son, my family, and all others who have experienced a loss!

That's what a great post does, makes you feel, right?

Take care!