It is early morning and each day starts the same, Zoe calls for me when she wakes, and I go to her. She scoots over , inviting me into her warm bed . She calls for me in the night , to take her to the bathroom, for milk, so it has not been very long since she has last seen me, yet now holding the blanket back and moving into my arms, she acts as if it has been forever since I have held her this way.
” A school day today? A stay-at-home day? ” she asks. Zoe is almost 9, and has just begun marking major events occurring into the next day. We talk about her day and I hand Zoe her glasses and I wait, knowing what she will say.. ” Great.. NOW I can see!” and with that she laughs and smiles, embracing her limitations , her life , happy and eager to start her day.
Without her glasses, Zoe is legally blind, her vision now severely affected in the dark. The prognosis is she will eventually lose her vision, and Zoe is mastering braille now, to prepare for the if and when.
Zoe is still smiling , impatient now and pulling my hand, in a hurry to start her day. ” Let’s go Mom!” she says and I smile too, taking her hand to help her walk across her bedroom to her walker. This is my way of checking her strength each day.. this four foot one handed walk across the carpet. A mother just feels intuitively.. and I can feel by the weight of her lean, the movement of her leg muscles, the solidness or shakiness in her step, how much energy she has to start her day and what adjustments or adaptions will have to be made throughout. This simple act of her small hand tucked within mine, stays with me always- reminding me not only how much she needs me, but how very far she has come and how she chooses to push, always moving forward.
Her father chose her name, as he did for Zoe’s older sister, Olivia. We had complications with both pregnancies, so while I was taking care, reading baby books and getting ready – he was thinking ,reading , and researching names. It was natural for him- he appreciates art, life and words. He is sensitive and loving – and he has seen much more of life than I have. He chose well for Olivia and when it came to Zoe – her name truly defines her – Zoe means life.
Zoe was three weeks shy of her second birthday, the first time she walked across a room, all by herself. We had been in physical therapy almost a year, and never progressed more than a few steps. Some of her medical data had been misread, and we did not know then she was missing a great part of her cerebellum. A week after returning from our first life changing trip to the Cleveland Clinic, Atalie ,our PT arrived at our door, with a mini reverse-walker- sized just for her. She has had 4 or 5 walkers since then, still with front wheels only, and she has never stopped moving. She was a natural that first time as a toddler, totally unafraid. In fact she sang, hummed really, anthem of her own as she moved across the room that first time, her head held high-grinning as if in awe of herself.
It has been 6 years since then,and yes she has fallen many times. At the park, smacking the cement full on with her face, in a parking lot, in her classroom catching the corner of a rug, in our hallway at home, and even in the grass. Each time I blamed myself , feeling guilty for days that I let a child so fragile, fall on my watch. I watched the bruises on her forehead turn every color of the rainbow, when all I could think about was all that was already injured and imperfect neurologically and that I let her fall to more harm. I held ice to her split lip, time and time again- thinking how challenged she was already eating, with speaking- and that now those things would be harder for the short term.
Zoe has taught me so much through the years, she has twirled and danced in her walker across the same tile floor she has fallen on. She runs through the house when she is excited, down the same hallway causing me to yell after her to stop running in the house. She holds a microphone to her mouth , singing as she shimmies and shakes in her way- grooving to to the latest on Radio Disney. She puts my iphone to her mouth, talking to her Daddy while he is at work. I watch her speaking slowly, knowing the effort it takes and that he will wait patiently for her words to come, knowing he will understand her and marveling at her determination.
She doesn’t fall as much anymore- yet still I haven’t stop worrying about it, when her energy is low and her muscles so tired, I negotiate quiet time to rest. But at the start of each school year- I remind those who work with her ,that Zoe wants to have fun and move like all kids do. I remind them that kids fall and get hurt, and if she is experiencing life like a typical kid, than to Zoe- it is worth it.
Because living life, is Zoe’s gift. She doesn’t hold back, even when she is tired or shaky, even when her muscles fail her and she falls. She inspires you to embrace life so fully..that you can’t help falling yourself.. falling for her.