I am reading a book at the moment about a mother who has lost her daughter to problems associated with diabetes. Last night I read a part in the book and my thought 'oh my God, I can so relate to this and it says it better than I ever could'.
..Not too long ago Nicole and I were living our own lives. And then she got sick and, by the score, doctors and nurses and therapists and social workers began falling out of the sky. ... In our wallets, their faces replaced those of dead presidents. ...Our lives were no longer our own. Every facet was governed and judged by someone else. First we were free, then we weren't, and now we were here. That's all I know for certain.
This is exactly how it feels if you have a child with a disability. Your life is inundated with people. Don't get me wrong, I have extremely grateful for all the help we receive. It's just that life is very much different. At the end of the day when you might throw off your bra or when you get up of a morning and think you might leave your nightie on until you finish tidying the house, you can't. Well maybe you can, but your house is going to have carers in it and I am sure they don't want to have their retinas burnt haha.
Your chain of thought changes and this was brought home to me this week. When I was following the ambulance to the hospital when they took Peter up, my mind was racing a dime a dozen. In the five minutes it took to get to the hospital, I had rung Jade, Peters sister and worked out a plan of action.
With Ryan in respite, my mind was racing... If they kept Peter in, Ryan couldn't stay in respite as it was Easter. Okay I will have to ring CCRC, QMDA, Focal and Alara to try and organize full time help. I had formed a plan of action in my mind and all this and the phone calls in that short drive.
Luckily Peter is fine and all this didn't have to happen.
Now for some observations from the hospital.
Shoes are optional, as most don't have any on.
You have to tell everyone around you why you are there and find out why they are there.
If you have kids, it gives you the right to talk really loud and try and be the centre of attention.
It's okay to use your phone and talk as loud as you can without going outside.
Speaking of outside, it's fine to go out and the staff spend forever trying to find you when your turn comes up (if it was up to me, you then miss out on that spot and the next in line goes).
If you eat chips or any other food, you can more than welcome to drop it on the floor.
Shifting to a different seat to get away from weirdos doesn't work, they just follow you so they can keep telling you about their kidney stones and past medical history.
Thank God we only have to go there rarely (third time in our lives, all what they thought were heart related and closest place with the right equipment if needed). Private health insurance is priceless, when it means that at other times we can go private and not deal with the above situation.