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Mitochondrial Disease Awareness Week is Over, and What Our Future Holds..

Zoe's Summer of Independence

It’s seems like only yesterday I was sitting in a small room, with a desk between Zoe’s Doctor and I - as I ask him question after question- all of them starting with “ Will she ever..?  And in that moment, instead of feeling tragically overwhelmed- I was empowered. 

Finally, I was getting confirmation on something my mother’s instinct had always known. I was getting answers.  

Seven years have passed since then, and for the first time, in a long time- I find myself starting over asking questions again, researching and  learning new methods for tackling daily life and Zoe’s physical and medical challenges. Zoe is 10 now , and continues to give her all to everything she does. She approaches becoming a “ tween “ no differently,  reaching for more freedom, becoming frustrated at times that she can’t enjoy certain privileges her “ almost teen” sister earns. 

We have been using the freedom of summer to try new things.. increasing Zoe’s independence in areas, encouraging her to reach further, try harder ,climb farther.  She is talking about her feelings, her wants and needs. She is proud when she helps in the kitchen, mixing pink lemonade or hand washing some dishes. We have been increasing her PT with my goal of teaching her safety limits alongside her desire to be more mobile and independent in her wheelchair. At the store the other day, I leaned in to jockey her out of a tight spot and she raised her voice “ Independent, independent” she reminded me, recalling the word I used when explaining the increased summer therapy schedule. 

I am teaching and I am trying- and there is never a perfect balance. I want Zoe to understand we are always here to help her, like when she asks me to use my hands to “ walk her” because she is too tired and too shaky to use her walker.  I want her to always know that it is okay if her body just can’t do what we are asking it to- yet I want to satisfy her mind and spirit and her desire and determination to “ do” for herself. 

There is a heat warning here in AZ today, and somehow I find myself at the grocery store for chocolate cake ingredients. Entering from the burning hot parking lot, I see an elderly couple moving very slowly, , approaching the door. The wife is pushing her husband in his wheelchair . My eyes easily take in even the smallest details as I move closer- the removable seat cushion, the bag strapped on back, his feet solidly placed on the footrest- and instantly I know how much effort it took for this trip to the store. Yet, the wife’s face is relaxed and smiling , and I can hear her asking her husband if he wants to sit inside and have a cup of coffee first. I am struck by the easy way she moves, the unbothered gentleness in her voice, that she isn't just devoted, it is more- she is understanding that her husband’s body isn't capable , she is accepting of the extra work involved to help him get where he wants to go- do what he wants to do- and instantly I understand the slight undercurrent of sadness that has been nagging at me we move through Zoe’s summer of independence.  

It is the stark reality that Zoe is growing up and what I want for her own future. The hope that  she too will be always be understood and accepted- and that we will always be there to help her go and do... - whatever her body just can’t.