Thursday, June 4, 2009

Disability Is Felt By Children

Destruction and I have been close from the moment he was born.  There is a special connection between us that really feels like more than the mother and son bond.  There are times when I look at him that I am so overcome with love that I simply cannot speak.

Last night he once again woke with a recurring dream of my death.  Since I was first diagnosed with three chronic illnesses, the person that has suffered the most other than my self ,is my little guy.  He has tried in his own way to take care of me and there are times I catch him staring at me with a clear look of concern.  He image remembers all to well the crazy things we used to do.  Every Friday we would do a chicken dance to celebrate making it through the week.  We have always loved music and so we would crank the music and have an impromptu dance party. 

He cried for hours last night as he told me about how he had dreamed of my death.  Nothing that I said comforted him as I covered him with kisses and hugs and spoke of my love for him.  As we lay in the darkness and he pleaded with me not to leave him, my heart broke and I struggled to hold back my own tears.

My life has changed in so many ways since becoming sick.  I am no longer able to hold a job or do the everyday activities that I once did.  Gone are the days in image which I would spend hours in the kitchen making elaborate meals for my family.  A new recipe used to be a great find and I loved to explore.  Today throwing food into a crockpot is about the most that I can handle.  It will sometimes take hours to assemble even that, as I might have to grate cheese and then sit down for half an hour to recover and then go back and chop onions and take more recovery time.  Gone are the days when we would bake cookies together while we sang silly songs and talked of nonsense. 

There are days I feel like a burden to my family.  I have always tried to speak to my children about our shared responsibility and finding that I can do so little to help around the house as my unhusband struggles to do it all with the help of the children hurts me.  Our life is not what I had imagined it would be at this point. 

image This year as his school prepares to go to the Toronto Zoo for the end of the year trip, I am once again unable to volunteer.  I have no way to transport my new scooter to the zoo and they only rent wheelchairs which don’t work for me.  I want to interact and play a large role in his life and yet due to my physical limitations there is so much I am forced to miss.  Once again his father is going to attend and represent the both of us while I stay home with our youngest child Mayhem.

I often wonder whether or not this would have been easier for him to handle had he been born to a mother that had a physical disability to begin with.  Did those precious few years of my ability cause him to feel a loss even more or would he have always felt as though my life is in peril? 

When days like this happen it forces me to realize that as much as I feel like this is a personal loss and the pain and suffering belongs to me alone, those that love me and are the closest to me suffer right along side me.   As I held him last night and he cried in my arms, I did realize that even though I cannot do the things for him that I once took for granted, my presence in his life limited or not is worth something.   Perhaps it is not the things that you cannot do that are important but what you can do that is.


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