I am trying desperately to have a normal existence for the time being, but the idea of what we will have to do for Clayton's back looms over me like a bad storm. It is heart breaking imagining subjecting my child to a medieval-like contraption for two to four weeks. Wheelchair traction is not something that should be a part of a child's life, yet at the same time, I suppose I should be thankful for it's existence. Iswear, this life is a constant tug-of-war between being thankful for everything you have and being pissed off that your child has to deal with this stuff in the first place.
His back scares me so badly right now. I am scared of everything we are going to have to do, and I am scared of it getting worse while we have to wait to do anything. And wait we must, because that is what the oncologists have asked us to do. It is all a delicate balancing act.
I haven't even written about the fact that last weekend, Clayton had his first bath. I've hesitated because what was such a happy time for my sweet little man was also a sad moment for me. Since we haven't been able to bath him, we have not seen him in the buff very much for the past year (changing clothes happens so quickly) and while we knew his back got worse, really seeing it just hurt. I couldn't help crying as I watched him start splashing around for the first time in a year. He was so happy all he wanted to do was splash and I couldn't get past how bad his curve now looked. I had to walk away just to have a minute to get myself together. I wanted to scream and punch something and get pissed off and everything all at once. It just hurts inside; it hurts so damn bad. To want to spare something so sweet any harm and to want to fix them and knowing you can do neither and so you are left feeling helpless is a horrible feeling. There are days when the weight of that reality means that it takes everything just to put it all aside and pretend everything is OK. My sweet sweet boy does not deserve all that he has been given to endure. There are days when knowing that he needs me is the only thing that pushes me to wake up, put my feet on the floor and get out of bed. Being that this is our reality that we live everyday, we in some ways become numb and are able to live our lives as though things are OK, but then there are those days that sneak up on you when it takes everything you have to focus on whatever the day holds and not dwell on things.
There are so many times I wonder if I made the wrong decision at some point along the way. Could I have done something to keep things from getting where they are? But I know that I did the best I could with what I had. I was a 22 to 25 year girl trying to make decisions that were well beyond my years. I just hope that I did the best I could for Clayton. And the thing I worry most if I could have done something more about is his back. Did George and I follow the right doctor? What's done is done and there is nothing I can do about it now, but I still think about it.
Sorry for the random ramblings of a cancer mom... Lots of things constantly running through my mind.
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