It was almost 6 am and I was helping Olivia, my pretty typical ten-year old, review for her Science test. I say pretty typical, because O has a mitochondrial disorder just like her more affected younger sister.
O doesn’t use a walker or wheelchair, instead she runs until she is tired. She spins, she walks, she sits in a chair , usually sprawled with her feet higher than her head-without anyone adjusting her for better muscle support.
And although they live in the same house, follow the same rules.. share Barbies, Polly Pockets , t-shirts, cd’s candy and stuffed animals- we teach each of the girls their own variation of the “ Do your best job, give it your best try, go for it “ approach to life.
With Zoe , we are more protective. Zoe is missing almost half her cerebellum and has generalized epilepsy. Her face flushes when her body is overly stressed or low on energy, and often comes home from school early. There are days when she wakes up tired, slightly slurring her words. Olivia has renal tubular acidosis like Zoe does too- tires easily, has ashthma, GI issues, struggles with some anxiety , but overall looks great, tries hard and struggles mostly with energy issues. After the last three weeks of virus in our house , first Olivia, then Zoe- I could tell that Olivia was tiring of the protective approach we were taking to Zoe’s care.
Olivia is a smart kid, and it won’t be long before she will fully understand that she has the same “ progressive” disorder as her younger sister.
So here we sat, O and I , side by side on the couch that morning. I was gulping down coffee and helping her review the functions of the cerebellum, the nervous system and the role of the brain. The timing seemed right to explain again how much of Zoe’s cerebellum was missing and how that affected her balance, and motor function, Zoe’s epilepsy and how her episodes of dizziness are most likely seizures. We talked about the differences in Zoe’s brain and Olivia seemed to really understand. It made sense, her book open on her lap , the scientific explanation there in black and white.
We finished our review and I sat watching O’s still sleepy face in the early morning light, admiring her beauty, amazed by her intelligence, her ability to empathize and understand her sisters challenges in a different, newly mature way.. “ But one last thing Mom,” O said. Laying out the words that would tell me that although Olivia may have analyzed and acknowledged the definitions of the words she heard, her heart simply would not let her understand.. “ Zoe won’t need her walker or her wheelchair forever will she? Her muscles will get stronger, when she grows up. Right?”
I took a sip of coffee, considering how to answer her question. Considering Olivia’s future, Zoe’s, their shared diagnosis and how far Zoe has come..and I came to this truth. “ You know Olivia, when Zoe was a baby, we weren’t sure she would ever walk with a walker, much less run with it, or do half of what she is doing now. But she has amazed all of us, she still does, every day.”
Olivia sat silently, considering my words, seemingly accepting the natural end to our conversation. My heart was pounding as I thought.. that was a positive answer, something for Olivia to reflect upon and accept as truth , and as her heart and mind allow her to see more of the truth , when she is ready to understand .., the meaning of my words will change.
I stood, pulling my robe around me and reaching for my mug of coffee, and as I turned.. facing the kitchen , the empty open lunch boxes waiting on the counter….there was Olivia’s voice again “ But Mom, how will that even work when she has kids, you know when Zoe is a Mom and has to use her her walker and a wheelchair ? How will she do it? “
I stood still, and silent- my breath caught in stunned surprise, thankful that my back was turned ..as the tears fell from my closed eyes.