The Loss

Sometimes the reality is so hard, my beautiful baby girl has this nasty, debilitating, life sucking syndrome and people outside the circle just don't "get" it! For the first time in a long time I cried about it, and the unfairness of it all. As I was downstairs tonight I just looked at a photo of Grace when she was just about 10 months old, she is staring at the camera and is smiling for me, she knows what to do when I tell her smile. Amelie is 26 months old and can't do this simple command. She smiles when Retts allows her, she say's the odd word when Retts allows, she eats her food without getting sick after when Retts allows her, and if Retts allows her she MAY live until she is 40? Who knows? Can you even imagine what it is like to look at your other kids baby pictures, something that used to bring you so much joy, and cry in pain? Pain caused by the knowledge that you will NEVER see your little girl smile in that way, that she will NEVER have the same opportunities as her sisters, that her life will be filled with some amount of physical and almost certainly a lot of emotional pain? Can you imagine hearing your 6 year old saying that when her mummy and daddy dies that she will be the one looking after her sister and smiling about it? We are again grieving for another lost future, after we lost our son we never once imagined that kind of pain would visit our home again, and surely to God 24 months later like some sick joke July brought his usual gift of gut wrenching pain. People constantly tell us that they will support us, but the only people doing that are doing so are our families, a few close friends (very few) and our internet family, the Rett family, those parents who know our pain, who know the fight and the pure love these girls have in them. People don't seem to get that Amelie, for a want of a different word (any word,) is a child with a limit on her life, we live everyday in the knowledge that she could die suddenly and maybe some think this is dramatic but hey you know what? We have spoken to and grieved with parents whose girls (and boys) were doing great and who all of a sudden just got sick and died. We live with the knowledge that there is a cure close to hand but also in the knowledge that is maybe too late in coming for many of our girls. I also have come to the realisation that Amelie is just too precious to share with people who can't/won't take her special needs into consideration. When I, her mother, make certain requests to maintain her health and I find they are being ignored, I am now going to take that as a sign that people can't be bothered to support or care about her and will be cut from our lives, it is a privilege to know her and to be in her presence and from now on only those worthy of her can interact with her. I am sick to my back teeth of people making me second guess myself and whether I am handling this "stuff" properly. I know I am usually so much more upbeat but hey when people make you question yourself the mask begins to slip. Today my mask is off and I am grieving tonight, I am sure that tomorrow will be a new day and again I will put my mask back on but for tonight I am a mother who is utterly heartbroken.