Thursday, March 15, 2007

December 3, 2006

Phillip was here this weekend! It was so awesome to see him. It had been 3 weeks since he was here last...his father and I alternate weekends but "my" last weekend, they had arranged to go see King Tut in Chicago, so I gave up my weekend so he could go with his Dad and family. They had a great time and I was so glad that Phillip got to go, but it was great to see him this weekend!!!
Knowing how to explain my ALS to Phillip is a challenge. He is very literal...for instance, when we have a guest over and they say "Well, I've gotta go" he has been known to get up and open the front door (as if to go). This ISN'T because he wants them to leave necessarily, but simply because in his world words are taken literally and at face value. SO when he heard that I would die from ALS he made the logical jump and assumed it would be NOW. Trying to explain that it kills slowly, over time and that death really isn't from ALS but from complications....well, that's just too difficult to explain. I'm left reassuring him after every time I leave his sight that I'm "not dead yet". I did write him a letter trying to explain and hopefully, by reading it over and over, he can grasp the fact that my demise is not imminent.
Tonight Christopher suddenly developed a migraine, or at least I think that's what it is. He complains that his "hair hurts" and starts crying. We sat on the floor in his room, with him wrapped in my sweatshirt, and just rocked while I rubbed his back. Now, there's nothing newsworthy in this....I'm just being a "mom" and he's had headaches like this before so I'm not worried...but it suddenly occurred to me that sometime TOO SOON I won't be able to hold him and soothe him anymore. Rubbing his back won't be an option. I am SUCH a tactile is going to be so hard not being able to reach out and touch him. I hope that others will still touch me....take my hand, embrace me, etc. I know that someone in a wheelchair who is a quadriplegic isn't a warm and welcoming most people in that circumstance have no sensation.....but I will.
When that time comes I know that it will be vitally important to me to be able to sit and just watch Christopher playing. To see him in "his element" and to be a familiar part of his world, even if I'm not the "old me" anymore. I want somehow for him to know that I'm still "Mommy" and that I still hug him in my heart.
But enough of THAT! I am enjoying all the hugs and love that he'll give me NOW! I am so blessed that, because of his disabililties, he isn't the "typical 9 year old" who flinches at Mom's touch and screams "EEEEEEW" at the mere THOUGHT of mom kissing them! :) Something to be grateful for!
I actually have SO much to be grateful for. I am continuing to be amazed at the love and support of my friends. There have been some surprises....some who I was sure would be extremely supportive have been absent and/or silent, while others, who I never thought of as "close friends" have been among the first to jump up and say "how can I help?". I have a few regrets that I live with, but giving my heart to the people I care about is not one of them. Love, Claudia

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