The other week I was talking to another Mum who has a child with additional needs and was talking about our appointment schedules, about what teams come into the house, and about how fast the waiting list seems to be going for us. I also explained a little about the test results for Great Ormond Street and how we are going back there at the end of the month.
All of a sudden this Mum turned around and said “Wow BBG really isn’t well”. It really stumped me.
I wasn’t angry at the statement, I wasn’t sad at the statement, it was just a statement that made me suddenly stop in my tracks.
People say comments like this to me all the time and I just nod in agreement but when another Mum states it that knows roughly what your going through from personal experience it makes you suddenly realise what your new normal is.
My new normal isn’t the same as most parents, my new normal isn’t even the same as most parents looking after children with disabilities. I have so many professionals round each week, I don’t actually know which organisation they are coming from! It takes statements like this to just make you step back and realise this.
It takes such a simple statement to remind you that your daughter isn’t well, that actually although she has no tubes or physical equipment that you see on her, that you would associate with a very ill child, it doesn’t mean she isn’t ill. When we were being referred to all of the organisations we were told the waiting lists were long and that realistically we wouldn’t get anything before the summer holiday but every single organisation has turned round and given us dates for them to come over within 3 weeks of the initial assessment. I asked one of the lovely ladies why this is and she said, that although there are waiting lists, they prioritise based on numerous reasons. It hit me that my daughter was “worse” (although I don’t like doing top trumps on disability) then all of the other children on the list as she was bumped up to number 1 on the waiting lists.
Everyday I am just so thankful that my daughter is still around, everyday I witness miracles that she does. Everyday I forget how ill she is until statements are said and until waiting lists disappear. It is extremely strange place to be in, one I am grateful for as we aren’t waiting around for help, but one where I am worried as she is being bumped up the waiting lists and seeing so many professionals, professionals that are seeing that my daughter needs the help.
It also reinforces the fact that not all disabilities are visible and you really can not judge a book by its cover!