People

I forgot to mention another jaw dropping moment last night. The lady from medicare. I went in the other day to get some money back. I save all of mine up and get heaps at once cause I like being able to spend the money all at once. Anyway, this particular time I had heaps cause we'd been to the neurologist, opthamologist and a few others. When I sat down at the counter the lady commented that I had been to a lot of doctors lately. I said yeah there are a few, trying to politely fob her off, it didn't work. She then said gee you've had to spend a lot, so I said yes well ones a neurologist, ones an opthamologist and one was another doctor and she said gee whats all that for? I said oh well my daughter was born with cerebral palsy. The lady started on with the whole "Ohhh you poor thing" business and I shut her down, I said well we love her. It kind of stopped the conversation and I was happy enough for it to end there. But the lady obviously hadn't had enough - she went on to ask me if there was anything they could do to help her. I said no, its just the way she is in a very haphazard 'oh well' kind of manner. I think she was a bit taken back by my relaxed attitude and she asked me... wait for it.... she asked "is the cerebral palsy something she is going to grow out of"!!!! OMG! Can you believe it??? She clearly has absolutely no idea about CP what so ever. I just said no and got up to leave. Some people have no idea!!
As I said yesterday, family. We have got the most amazing family anyone could hope for, but again, some of their reactions have been funny. Some people going way over the top emotional, some others hurting our feelings beyond comprehension. There are some who will never ever know how much they have hurt us because they don't understand the hurt we go through every day. Every day we face things that others don't need to think about, we go to doctors and specialists for this thing and that thing, every single day is filled with stress and worry. A 'normal' mum doesn't have to go through all that, and to a normal person they just don't comprehend what its like. Its through complete naivety that people do and say things that hurt. They don't know what its like to think about what sort of a life your going to have now something like this has happened. They had no idea what its like to give up the dream of the perfect little family, they have no idea what its like to have a terminally ill child, they have no idea that we not only have to plan for life long care, but for the funeral of your only child. She isn't going to live for a long time, simple as that. We have to think about where her funeral should be, what sort of coffin she'll have, balloons or flowers. She isn't going to have a first day of school, she isn't going to have a last day of school, she isn't going to do her deb or get married. There is a massive sense of loss that is associated with that. No one ever dreams when they are a little girl that you are going to get married, buy a house and have a disabled child who is going to die before you do. Some people are too caught up in their own existence to even think beyond what is happening in their own lives to stop and try to comprehend that for us and that hurts. I am trying my absolute hardest to understand that its through naivety that people do and say things and I'm tyring my hardest to think that they wouldn't knowingly or intentionally hurt us, but it doesn't take away the hurt. People make remarks like she'll be out climbing trees when she's older - well actually no she won't. And comments like - when she gets older she can use one of those play things or toys or equipment that a normal baby probably would be able to use - people just don't get that she just won't be able to use normal things. She needs a special chair, a special high chair, a special pusher, a special wheel chair, a special bed eventually - nothing will be the same. And comments to do with how well their child is doing at a particular thing (facebook is the worst for this - just about every day there are updates from people with what their child is doing, I'm happy for them - honestly, but it just rubs it in). It all just feels like they are putting more and more nails in your chest. It just hammers home to you all the little things that Holly doesn't do and will be never capable of doing. But again, people don't see beyond their own situation to have some sort of forethought of what Holly will be capable of. Complete naivety.