Before Now

I sometimes find myself trying to think back, to remember what my knowledge of the medical world was, before Sophie was here.  Did I know what a ng-tube was? A g-tube?  A gastrostomy?  What did I think Cerebral Palsy was?  What did I think blindness meant?  All these things that are part of my everyday now, I can't really recall what I knew of them before.  I think I knew a fair bit, but is it just my mind remembering things from the early days of our journey with Sophie?  I know that I used to think that Cerebral Palsy meant that anyone with CP had an intellectual disability.  I mean, it was a palsy of the brain, right?  So wrong.  I am sure that I knew what tube feeding was but maybe I didn't know any of the details.  Had I ever even heard the term Hypoxic Ischemic Encephalopathy?  Had I thought about the possibility of DNR's?  Can't remember.   Did I know that a child who is non-verbal could still communicate with their parents? I don't recall.  And on and on.

 When I was just about finished university I volunteered for a short time at a residential treatment program for complex care/medically fragile children.   It is a very selective program that about 40 families currently use for their children in Southwestern Ontario.  It is a place that is held in high regard across Canada and is very difficult to get into.  I knew what the children were like that went there and never in my wildest dreams did I ever think it would be my child.  These were beautiful, loving, fun children, who had very, very difficult lives, medically and physically.  When it was suggested to us that Sophie be admitted to the program I was shocked and we resisted for a while.  But after some time we knew the program would help her and Sophie has been going a few days a month for 3 1/2 years.  When I had volunteered there many years ago, why did I choose to volunteer there?  There were thousands of places I could have volunteered.  Was I on that path for a reason or is it a gigantic coincidence.  Who knows.  But I won't lie, it it freaks me out a bit.

Jason and I used to joke about how if we ever had a special needs child I would be raising it on my own because that wouldn't be something he would ever do.  Wouldn't you know, he is the most dedicated dad to our severely medically complex girlie, and he takes it all in stride.  Because, of course, she is more than a medically complex child, she is our daughter, first.  We have had to deal with issues that I wish no parent had to deal with.  I certainly never thought that I would be worrying about how I would be lifting my daughter in the near future.  It is the one thing that has been bringing me down lately.  It scares the crap out of me that she is getting so big.  Thank God I am strong, and that Jason is here right beside me for when the day comes that I can't get her out of bed or the car or the tub on my own.  I am so thankful that we moved when we did and created our accessible home.  I don't know how I would be carrying her up and down the stairs all day and night in our old house.  This new house is tailor made for our girlie and it came just in time. 

We are very lucky, because things could be so much worse.  Sophie is very healthy this fall and we know many people who are struggling.  For now, we carry on as we have been until today, just being us.