Is a life like mine a life people would prefer not to acknowledge? or is it so unheard of that its all so new ? Or do you hush and don’t mention it?
I often think back to when I had my first baby and how I actually did worry I would have a baby who had a disability. Many people say it never even crossed their minds the thought of having a sick or disabled child. I did and I’m not so sure why this happened but maybe two reasons and one was I have a disabled aunt and I had lost my first pregancy. So I was somewhat aware of that kind of world.
But nothing and I say nothing can prepare you to the hospital world of seriously sick babies and children. No word No gesture No nothing can prepare you.
I felt so thankful to be born and to be giving birth in this beautiful country where we had facilities to cater to such unique disease/illness. Thankful for Medicare which is free health care. Thankful for trained nurses and doctors who would spend hour after hour caring for our children on life support and worrying just like us if not more at times when we were unaware of the medical terminology. Working long shifts without suffient breaks.
So are we ignorant to what’s around us or are we not?
Do we think it won’t happen to us? Yes I’m sure many do. I’m certain many people think disabled children happen to certain people. I’m sure this is what’s perceived as a punishment. Well I tell you it’s hard but it’s far from a bad thing. This is the best thing that could ever happen to someone. The best privilege to have a life like this be part of your life’s path. To be taught and shown the most precious things in life and have your own thoughts and aspirations change due to such a curve ball is beyond imaginable.
Truly no words can express the change in life and self you will have. So please if you are aware of this kind of life and don’t live it yourself please speak about it positivily to others and let’s change the stigma attached to having children with disability and chronic illness. Let people know it does exist and it’s hard yes but it’s a beautiful journey.
I could honestly say I could live five lives and never experience or see and learn what I have in just this past eight years. I truly am so lucky.
I have an open heart and an open mind and I will continue to talk about this and I will continue to live it as long as my children allow me to along side them all the way.