May 7, 2006

I was re-reading a letter my mother sent out last year. In it she wrote, "Sometimes I am like Scarlett O'Hara with, 'I will think about it tomorrow.' It is once again time for Birdies for Ben and I can't think about it tomorrow. Our Ben is reaching stages in his disorder that we wish we could think about tomorrow but we can't. It is upon us. We all dreamed the disorder would not develop as we were told it would, but the reality is that it has."

This year I seemed to have caught a bit of Scarlett as well. The challenges of Benjamin's condition grow and change each day and I am left wishing that I could think about them and the things that need to be done tomorrow. But I can't.

Once again this winter, Ben's disorder has left him crying by day and sleeping often only 3 hours at night. Some days Ben offers me words but most he is mute and I know his words are likely lost for good. Some days he is able to move across a room freely but more and more frequently his instability forces us to seek the safety of his stroller. And even though I am tired of walking around the block with him, I know the days when he can no longer do so are coming quick. Some days Ben munches on his food fine but most I am mincing up everything and I know decisions like feeding tubes are looming. Some days I wake up feeling driven to tackle the new medical and behavioral problems that are becoming so frequent and not let this disorder win. Most days though, I wake up wishing I could "think about it tomorrow." But I can't.

For everyday, I wake up knowing there are so few tomorrows. On those days it is often easier to think of the yesterdays. I would like to share with you some words Ben shared with me in 2003.

From Jennifer's Journal:
Tonight while trying to cook dinner inside on the stove and outside on the grill, do homework with Noah and manage one of Isabelle's art projects, Ben was demanding something. With no time to interpret what he needed, I said to him, "Ben I can't do this now I just need to…" and he interrupted, "What you need, Mommy?" To which I responded, "Sanity, Ben, Sanity. Do you know where we can get some?" And in his sweet little voice he matter-of-factly answered, "The Beer Store."

I hope that his humor and the record of his words bring you the wealth of happiness that remembering them brings to me.

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