Truth Hurts?

The dreaded appointment has arrived. Why am I so afraid of this one? Its just another assessment, right? Except its not. Its to assess Avas future needs and her life expectancy. I like to think I am a realist and am not setting my expectations and hopes too high. I do realise my daughter may never walk or talk. I accept that she has severe epilepsy, is severely visually impaired, has significant global developmental delay, has slight dysphagia and brain damage. I am ok with that in my mind. Its taken a long time for it to sink in and maybe I will never fully accept it really. But here is the thing, I know all this but it somehow becomes all raw and hard to accept when its said to you by someone else. Seeing it down in black and white makes it an unbearable thing once again. I know this is double dutch and shouldn't be the case. Didn't I just say I know all these things. For me I am ok burying it in my yes I know but will conveniently forget pocket of my brain. Written and spoken words on the subject make it jump into a very unpleasant part of my brain. I want to pretend all is well and forget that Ava won't walk or talk in all likelihood. Finding out how long we are likely to have her is something I dread and hope I am not told from this report. I guess this is one of the triggers spoken about in the article about chronic sorrow. In the meantime I will focus on the immense joy she brings us instead.

Our warm safety blanket

I know I do a lot of bawling out of the 'professionals' for very good reasons but today hold onto your hats because that's not my aim here. I want to acknowledge the huge safety blanket  I find wrapped round myself and my family.  People are so good to us and help us as much as they can a lot of the time.
For instance, the two gentlemen who assisted me up and down the few stairs at Barclays with Ava's heavy chair despite knowing this. The huge amount of people who make a fuss of Ava when they see her and ignore her disabilities. The old lady trying to make her smile.
Complete strangers raising funds for my daughters development.  Our amazing pharmacist and her team who ensure Ava's safety and also help with her development and fundraising and never fail to ask after Ava and her sister. Our lovely lovely doctors receptionist who shows she cares and asks about the girls all of the time. I spend a lot of time dwelling on negative comments and the unkind stares, in reality I am surrounded by a fantastic community who care what happens to us and are willing to help us.
I wont lie I could write a novel on how much I am fed up with services for my daughter but I don't want to do that I want to focus on our safety blanket.   I want to focus on our epilepsy nurse who is there always on the end of the phone. Our consultant who listens to our concerns and acts upon them to the point we get a private consultation in his very busy day because our daughters seizures have gone mad. Anyone else would have said see the registrar on duty. Not our consultant.We are so very lucky with the teams we have. Ava's teachers at school, her carer at nursery, her nurse at school, the 243 people who like her charity FAITH, the massive list of people working to their best ability to ensure Ava's safety and health.
My older daughter and I saw a crash a few days ago and 2 ambulances, 2 fire engines and police attended. 3 cars had stopped to assist in the first instance. This is our safety net, our warm safe blanket. People are good, people care. I know this for sure in our neighbourhood. Our neighbours are fantastic. They help us out when times are tough, they help us raise money they ask how Ava is getting on. My amazing cousin who organises anything and everything she can for Ava and her man who will do anything for our family. We loved your surprise sensory garden tidy up. Our amazing friends who always get behind my crazy schemes to make my girl better and the best she can be. Without our warm blanket we would be out in the cold. I feel we are blessed, I feel grateful and the next time I am complaining please do remember this post. I may paint a black picture at times but  my rainbow is always there in the background. My rainbow is you and I want to say today - THANK YOU :)