A huge amount of my mind is taken over by not being able to accept that i dont have and may never have answers to my questions and fears. I know that in the grand scheme of things i am so very lucky to have children who are considered mildly disabled but honestly i dont know how to accept that they will always have some form of disability. I want to know whats wrong and find solutions that probably dont exist and make everything easier for them.
I dont want to spend 90 percent of my brain power in worrying and the other 10 percent being angry that other people dont ‘get’ me. I cant change who i am and i cant change what has happened but all that has happened has made me fearful, I fear for my kids for what they may suffer at the hands of all the people out there who wont be kind. I fear that after losing one child i could never contemplate facing a day without my boys and that losing them preys on my mind more than it should. But above all my children are fantastic and without them i would have learnt nothing worth knowing,I love them and just want the best for them. Its the fighting for all the right help and feeling how other people doubt or judge how we do things that drives me to distraction. Its great that others can sit up on their high horses and judge how i try to run my life which lets be honest is slightly more complicated than average families life, i sometimes feel like they honestly think they know better than me so maybe they should try it and ill go have a nice rest for a few weeks. Deep down it isnt the many appointments with the 8 doctors and the 3 different therapists that cause the problems or the medications or even the worry about their futures that really gets me down its the constant looks and whispers and judgements from other people that i cant accept, i dont want you to walk a mile in my shoes i want you to f**k off and let me do my best. I have watched Lewis at deaths door, I have watched him be anesthatised on at least 6 occasions in 18 months i have sat in hospital with him on many occasions and worried about his future, i have watched Robin be teased for looking a little bit different and i have watched him take every little thing he has to do like taking medication, wear a patch to stop slobbering and wee through a funnel in his stride. When you have done this come back and tell me how im doing it wrong or maybe you will see how im doing the best i can instead. Im talking about doctors who talk to you like your an imbecile who couldnt possible have an insight into what your own child feels and needs, while i bow down to your superior nonsense i know my child best, people in the street and in supermarkets who think you should learn to control your children when they arent happy and decide to have a scream, i am sorry my childs vocal chords offend you but give him a break its just a bad day and in the grand scheme of things while your shopping trip i accept has been rudely monopolised by my sons lungs its only for a short time.
And yes im talking about well meaning people who really honestly dont mean to offend but feel the need to inform me that in thier day they did things differently, while im sure that its true it doesnt help. Lastly for those who know me well and utter sentences that without ever meaning to cut me to the core i dont blame you for a second as its my own insecurities that put me down and i accept this im just not very good at it obviously.
I wish i didnt feel like someone else could do a better job, maybe fight a little harder and shout a little louder for the boys for the things they need and regardless of some people think they do need these things for a better and happier future im not feeling sorry for myself or looking for an ego boost if i already feel this way at times i really dont need anyones elses help in making me feel like im doing this wrong.
So im making a little pledge to myself and the key is in Acceptance, i will accept that i am who i am. I will accept that nothing much will change in my life but i will be happier in the knowledge that i accept that i am doing my best and that no one can judge me. So with this one word Acceptance that feels so very, very far away from me i will be happier it might take me a while to reach Acceptance as its still a way of but i think i might get there.