I know as a parent of a child with disabilities we all struggle at times with guilt, envy and loss.  That feeling that comes over you and engulfs you completely, and then you silently cry because your child will never be what you thought they were going to be, they are different.

Me, I am usually in the bathroom doing this as I don’t really ever share how I am feeling, so today, here goes.

When the boys came home the other weekend I was feeling particularly low, and Jack seemed to be a little anxious which heightens my own anxiety levels.  My boys mean the world to me and when they are home on a weekend I want to do as much as I can with them, however this can prove difficult as Jack will not get into a car with anyone else but me, and this then restricts what we can do as a family.

I am constantly asking Jack if he would like to go out, his usual response is no, then yes, however he changes his mind constantly as he seems to process what we will have to do to enable him to get out and then his anxiety kicks in.  During the course of the weekend we managed a short car journey to the beach, he didn’t want to walk there, we spent at least 10 minutes in the tunnel with the lets go, lets not go scenario, and then finally we mooched around on the beach for about 30 minutes.

So now I am setting the scene, Jack is nearly 6ft tall and broad, carrying as always his teddy Sweep so to others he probably looks a little strange, to me of course he is just Jack.

Do you know how many people stare at him?

Do you know how many parents hold onto their children when he is around?

Do you know how I bloody well feel when this happens? 

I ache for the loss that my sons will never marry, will never work and never take me up the pub for a glass of wine.

I cry because Jack cannot tell me how he is feeling, I cry because I cannot give Jared my time as much as Jack, and I cry because Dan would like to be like his brother Elliot but he never will be.

At times I feel so alone, and carrying this guilt around is really not good for me, but I passed on Fragile X Syndrome to my sons without knowing and now they struggle with their daily lives.  Yes they are supported by wonderful care teams but truthfully what I really want is four strapping sons to come home, take the piss out of their Mum, enjoy a big cooked Sunday lunch and tell me about their lives……. Sadly this is never going to happen.

So yes I am envious of my family and friends, I grieve for the boys they should have been but will never be, and scared for what their future holds.

It was Learning Disability Week from the 18^th – 24^th June, so it would be wonderful if more people could accept disabled children and adults into our society without judgement because in mine and my boys world it would make being here a whole lot nicer.