“I like helping you,” my daughter Zoe tells me. We are cruising through our neighborhood grocery store, as I weave through the aisles, with my shopping bag overflowing and hanging from the back of Zoe’s wheelchair. Zoe expertly balances a half gallon of milk, green bananas and a loaf of crusty bread on her lap as she goes on. “I need to learn this stuff, how to be a Mom for when I grow up. I have been thinking about this...” Her words stop and start again, as she retrieves the word she was looking for and finishes the string of her sentence. She ends with most difficult question. “Is it hard to be a Mom?” She is smiling, happy to imagine her future-self this way.
I can’t imagine Zoe being a Mom. She is 11, and without detailing her prognosis, and debating the opportunities for adults with intellectual and physical disabilities, there are basic truths I have come to accept; Zoe’s metabolic disorder is progressive, her generalized epilepsy diagnosis is complex, and looking into the future makes my heart hurt.
Image courtesy the author.
It is the first week of summer, and getting to know my girl again is thrilling, in that roller coaster ride rush, amazingly scary kind of way.
I don’t know if other Moms mother like I do. I get that all kids are different. My kids though, their bodies cannot make energy correctly. During the school year, they are tired -- dead-dog tired and grumpy -- and the weekend family priority is refueling. School semesters fly by and suddenly there is a break, and I am lucky to get reacquainted with my kids again. There is more time, more energy and I can see how in just a few months, they have changed again. My sparkly, chatterbox “What are we going to do today?” kids, my not-so-grumpy kids that are energized, smiling and engaged.
There were so many years that Zoe didn’t speak -- when we communicated through touch -- that her thoughts and interests on even the smallest of things, still fascinate me.
Zoe’s big sister Olivia, is still finishing up seventh grade, and Zoe and I have started our summer, just the two of us, hanging out and "honeymooning" as I get to see all that is new and different about her. First came the physical observations: Her fatigue setting in earlier in the day, and yet, a surprising increase in balance as she rocked Wii Just Dance 4, holding her balance longer, as she moves her booty at a new record speed and with even more ‘tween attitude. She has matured emotionally too, and for the last few days she has told me repeatedly with teary eyes, that she is “eleven now, and Mom, you CAN’T tell me what to do ALL the time and make my choices” as she scolds me for signing her up for a one week day camp WITHOUT her permission.
Her fun time is different too as she fills her quiet moments playing with her favorite doll, and making lists on her iPad of all things she loves, calling out to me, "How do you spell?" ... chocolate, Build-A-Bear, ice cream and summer.
She lays awake longer each night before she falls asleep, and with the truth serum of soon-to-be sleep running through her child body, she shares her worries with me: fires, burglars, Daddy going on a trip... I lay next to her listening, holding her hand, as she tells me her fears and I try not to think of my own.
A week from now, Olivia, my almost teen will start her summer. Olivia, with her corkscrew, copper colored hair that sets off her natural beauty, her long legs, curves that keep coming and the little girl innocence that keep her from seeing the way others drink her in. Sometimes she walks into the room and I think, my little girl is in this woman’s body, "Noooo, I am not ready." But I know we have time still, and we will find our way together, that she is a fun companion, my girl who shares my love for books and meandering bookshops and stationery stores. My girl who tells me stories that make me laugh and shares new music with me that I never would have discovered on my own.
We will find our own rhythm, my daughters and I, with lazy days and hot afternoons stretched out before us, without homework and early bedtimes, we will find our way to each other through books, through music and laughter, through the every day quiet of spending time at home.
Both my girls still reach for my hand when we are out sometimes. Zoe will drive her power chair with her right hand and hold my hand with her other. Olivia will reach for me in crowded stores, or when we walk lazily through an outdoor mall.
And each time this happens, I am thankful, with both of my daughters and for very different reasons, I worry sometimes that time is running out.
So as summer stretches before us, I know I will savor the time we have. I won’t worry about my work-life balance, when I will find time to exercise, or what schedules we will follow. This summer I will open my arms to each moment, and hold on tight when my daughter reaches for my hand. It is a gift, this summer -- more than a sigh, this great gift of time-- getting to know my girls all over again.
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