Saturday, January 16, 2010


posted by Mary Lello, Saturday, January 16, 2010, 5:00 AM

"Two trapped rats". That's what a friend told me after she got a small window into our lives. She wanted to take Jim to lunch so that I might get a couple hours of free time. Jim didn't want to go, not without me, not with his communication abilities so limited. As we were trying to decide what to do I mentioned that I wanted to go grocery shopping and this friend said "give me your list and I'll just go do it". I lost it. I didn't yell but I think I was pretty emphatic in my saying "I JUST WANT TO GO DO MY OWN SHOPPING, ALONE!!"

And that's when she realized that I can not even just go out the door to go grocery shopping if I want to. She realized how she takes all her own freedoms for granted. She realized how trapped I am and how trapped Jim is. "Two trapped rats" .... pretty much sums it up.

Yesterday morning I got an email from a friend who told me she was heading up to the mountains to spend the night with several of our mutual friends and go xc skiing today (saturday). I suddenly felt so incredibly sorry for myself. This is exactly the kind of thing that Jim and I would be doing, and exactly the kind of thing that we don't even get invited to do anymore. Sometimes I don't know which is worse - not getting the invite and not being able to go or not even being thought of. I was so sad all day. Just wallowing in self pity and the loss of so much of our life. Feeling so lonely and being left behind, being left out of all the fun and the normal lives that everybody else around us can lead.

It's true, I can not even go to the grocery store without figuring out who can be here with Jim or I must try and time a short outing with his nap hour. Trapped.

I do not know how Jim maintains his sanity with his entrapment. His inability to get his idea spoken and understood, his tears when I am dressed for an outdoor activity, his total dependence on others to be able to go and do anything. His patience is astounding at times I think.

And so I'm just bitching today. Most of the time I operate in a grateful space, grateful for so much that is offered to us and all the help we do get. But I'm only human and there are other times, that I don't usually share with anyone, where I just lose it and collapse into that fetal position and feel that I may never be able to move again. Wanting so much more then what we have right now. Grateful for all that we have right now. The Yin and Yang of my life.

The red line of the first morning light is just beginning to show on the horizon. Another day is dawning.

Another day. May it, truly, be a good one.

Loving you all back,


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