He is doing so well. Yes, yes he is. But do you understand the little things we do every day to keep him on track? The things nobody but myself, and maybe his Dad and brother would ever, EVER remember to do?
You should be proud of him. Oh, I am, believe me. Especially as I know the effort it takes both him and us to keep the act up. For it is an act, you know. There are things that are a part of his nature, a part of the syndrome, that just would not be acceptable in this society.
I couldn't do what you do. Um, if it was your kid you could. You would. You don't get the choice.
But he's doing SO well! Do you know I make him laugh? That constantly I make little jokes, or smart comments, I twist and mock and cajole until the mirth explodes and drowns the anxiety in endorphins? Did you know sometimes he is so overwhelmed with the pressure of life that he hits his head and pulls his hair screaming "I can't do this anymore!" Do you know a lot of the time I want to join in? Do you know that the stress can overwhelm every part of his incredible mind, and stunt that beautiful brain? That sometimes I need to go in, soothe, talk, oil those mental cogs with silliness until the frozen fear melts and allows the intelligence to shine once more?
Do you know I worry endlessly about what would happen if I was not here? Who would he turn to, who could take away the pain, who could bring out the positives whilst minimising the negatives? Who knows him through to the truth of his soul and pushes the perfect buttons to make it right?
Who saves him from falling if I am gone?
Who?
Who would see the beauty and the endless potential of a boy who soars into worlds unseen by others all within the mind of mayhem?
But he's doing so well...
2 comments:
Beautifully written you have bought a tear to my eye.
I guess sometimes you don't need people to constantly try to encourage you but just acknowledge that yes, while you may be doing a great job, while he is a wonderful boy and of course you are proud of both yourself and him.
It is STILL really bloody hard and sometimes you just need someone to give you a hug and tell you, 'it's OK to feel like that'
Of course it's ok, it's normal.
It's how all Mums (even those who don't face the additional difficulties you do) feel at times.
It is ok and I'm sending you a hug x
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