This is a picture of a mitochondria. We have many of them in the cells of our bodies. Sadly, mine don't work very well. And since I tried to do more than I can last spring, I've spent most of the summer recovering from a "mito crash" I experienced in late May.I think I'm finally getting somewhere.
In past years, I've counted on a Beth Moore Bible Study or a good hour of worship for spiritual grounding and inspiration. Last week, however, renewed peace filled me at a Mito Social held in a Cobb County Library only minutes from my home.
Having never attended a support group (even after my first husband died), I was surprised at how much the mere presence of other moms facing my similar disease transformed me. Their stories, their tears, their overwhelm, and their desire for hope all mixed into one giant cocktail. And I drank deeply.
A pile of old CD's caught my attention this morning and soon the music of Chris Rice had me dancing. These words have played in my head ever since:
"I can sniff, I can see
I can count up pretty high but these faculties aren't getting me
Any closer to the sky
But my heart of faith keeps poundin'
So I know I'm doin' fine
But sometimes finding You
Is just like trying to
Smell the color nine."
Finding God of late has indeed felt a little more "like trying to smell the color nine". And if I'm honest, it's probably because trying to understand mito disease is also "like trying to smell the color nine". This elusive illness, that causes full body energy shortages, shows up in different ways in each child, teen, or adult. I know what to watch for; I know what meds to take; but I can't really wrap my head around what's happening deep in the cells of my body any more than I can smell the color nine.
Last Saturday, I sat in a room with moms who've lost children to the disease, with moms who are scared of losing a child to the disease, and with others who are trying to keep a medical crisis at bay, navigating life with normal looking kids who have very abnormal insides.
And I belonged. My 17 yr. old son and I both belonged.
We're not as bad as some. But as one mom pointed out to me today, "You were the only one in the room with a cane, Susan!"
OK. OK. I get it. I belong. We belong. And today I think we should call our club the "Smell the Color Nine Moms".
And maybe now that I understand my life isn't going back to what it was but rather moving forward towards this elusive unknown, I will get back to dancing and singing... and writing yet again. Will that ever really happen? I sure hope so. This adult onset mito patient has some stories to tell.
Thanks Lauri for the social and thanks Shawna for a fun call today. We can do this thing.
I can count up pretty high but these faculties aren't getting me
Any closer to the sky
But my heart of faith keeps poundin'
So I know I'm doin' fine
But sometimes finding You
Is just like trying to
Smell the color nine."
Finding God of late has indeed felt a little more "like trying to smell the color nine". And if I'm honest, it's probably because trying to understand mito disease is also "like trying to smell the color nine". This elusive illness, that causes full body energy shortages, shows up in different ways in each child, teen, or adult. I know what to watch for; I know what meds to take; but I can't really wrap my head around what's happening deep in the cells of my body any more than I can smell the color nine.
Last Saturday, I sat in a room with moms who've lost children to the disease, with moms who are scared of losing a child to the disease, and with others who are trying to keep a medical crisis at bay, navigating life with normal looking kids who have very abnormal insides.
And I belonged. My 17 yr. old son and I both belonged.
We're not as bad as some. But as one mom pointed out to me today, "You were the only one in the room with a cane, Susan!"
OK. OK. I get it. I belong. We belong. And today I think we should call our club the "Smell the Color Nine Moms".
And maybe now that I understand my life isn't going back to what it was but rather moving forward towards this elusive unknown, I will get back to dancing and singing... and writing yet again. Will that ever really happen? I sure hope so. This adult onset mito patient has some stories to tell.
Thanks Lauri for the social and thanks Shawna for a fun call today. We can do this thing.
