You might be tired of me, this being already my fourth or fifth post of the day. I'm probably breaking all kinds of social media protocol. I've been a Lion today for ALS, posting letters, rallying for donations, hoping for change. Change we can believe in, to borrow a recent and resonant campaign slogan. Once again in my life, I care not for protocol. Never have been much for it, to be honest. If you know me, you know that to be true.
I am sad tonight because we could not attend a dinner party that was specifically planned as a "safe" night out for us with close friends. Amazing friends actually, that know we can't really go "out" to restaurants anymore and who are sensitive to our situation and care extraordinarily about those issues. We literally got to the door to go out and H just had to say she couldn't do it. Her neck was tired, her voice was weak, her ability to have cheer had gone. I can only imagine how difficult that is for her, knowing her friends wanted her and needed her in some way. This is the life of denial that ALS brings us all.
After a late soccer game for J, one of freezing cold and blowing wind, I made my way to our friend's house to share a few minutes and a glass of wine, without my wife. I brought home some excellent food that was especially prepared for her gluten free diet, which she had no heart to eat. I'll admit I did coax her to a few bites of the special cheesecake Laurie, i assume, had made for her.
Strong as we may be, or pretend to be, this is very hard and my heart breaks a little every day. She is such a strong woman, it is hard to see her weak. We did make it to a Mother's day poem reading that R's 4th grade class put on for all the moms. R's poem concluded with "But I will always remember you for loving me, no matter what happens." I think that took a bit out of both of us, only because the "what" that will happen looms over us very large. It must have been hard for her to write, because she is a considerate child and i'm sure these words did not come lightly to her. A beautiful, innocent 9 year old should not have to contemplate such things.
If you will induge my poetry for a moment...
My heart is pure rock strung up on a frame
pierced in the middle cracking so slowly towards it's edges.
Where my girls are concerned, it cracks more than most,
like wet leather in the sun, pulling harder towards the post.
I pray that it does not break
Good night my friends. God speed on your travels to Washington or for the longing within your hearts, whatever they may be.
b.
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