Life with a severely disabled child

"This blog is partly for me...to have the opportunity to rant somewhere other than in my head...and partly for everyone else out there with severely disabled kids. We are a silent presence in the world. We have few friends, little time, even less help and understanding. Our choices are questioned, our immediate families fractured, extended families unhelpful (at best), medical and educational "authorities" painfully ignorant. We families need to connect with each other." - Opening message from 'Life with a severely disabled child'.

MY PRAYER  
In this moment I accept that I have been given care of a very fragile person.
I accept that I may likely never know why this task has been passed to me.
In this moment, I accept that I need not know more than the fact that what I do has value.

With that, I will care for this person to the best of my abilities.
I will forgive myself for the days I could do better, but don't.
I will forgive myself for the days I would do better, but cannot.
I seek to have clarity of thought that I might make choices most in balance with the many intertwining lives, including my own.
I seek to be supported in whatever ways financial and emotional that will maintain this balance.
I seek to learn how to draw from a well of infinite patience and energy.
I open myself up to the possibility of joy, of fulfillment, and of grace.
I accept that, in this moment, it is all I can do. -  Prayer of the author of 'Life with a severly disabled child'

I found this blog as I was surfing for 'severely disabled child'.

The mother capture it so correctly... that parents with disabled kids are often forgotten and left alone.

Dez and I feel it keenly.

But thank God for our cell members who accepted us so readily and lend us help so easily, despite us knowing them for only a few months.

And thank God for those friends who continue to remember us, and pop by occasionally (in real life or in digital life) to give us encouragement!