Gratitude in spite of...a burger and a shirt.

Right now I am feeling a bit bummed...my body hurts from the accident, my car is a wreck, I'm tired all the time from the accident and now...I have a cold. It's like the universe just said, "Shannon...here...gonna dump it all on you right now!"

I sort-of want to scream, "uncle," but, as you know, that's not my style.I forge forward...I keep at it. That is the attitude that has helped me to be who I am with Javad. Even when times are rough, you just keep going. I like to think of my friend Julie when we were walking a half marathon. It was not long after "Finding Nemo" came out and we would find ourselves saying, "just keep swimming," but also we knew at the end that we were getting a burger and a shirt, so that became our mantra...As we were walking up the hill, tired and ready to give up, we would start chanting, "a burger and a shirt...a burger and a shirt." That's sort of where I am right now...looking for the mantra to keep me going. Both of the ones from my past come to mind. When you parent a child with special needs, there really isn't time to think about other things. You just have to keep going...regardless.

I am grateful...grateful that I wasn't injured more in the accident...grateful that I was able to come home from the hospital that day, grateful that our nursing agency jumped to bat for me and got me coverage and grateful that it was our primary nurse, who probably cared more for me that she did Javad that first night. I have many things to be grateful for...good friends, caring co-workers, and students who really make my job worthwhile...sometimes I just am joining the pity party for 1...

I just have to remember, this sickness, this pain, all of it will pass....at the end I'm pretty sure I'll get a burger and a shirt!

For more about Myotubular Myopathy, Javad's disease, you can look at www.mtm-cnm.org/thanksgiving. If you want to write about how our family has impacted yours, make sure to hashtag your status update with #mtmcnmthankfulnessinitiative

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