"Mom, when I grow up I want to be a nurse so I can help people..."
"Mommy, will you teach me everything you do, so I know how to be a good Mom?"
"Someday, I'll drive a big car like this..."
My daughter Zoe has been telling me these things since the age of 6 or 7, when her ability to simply exhale and tell me what she was thinking finally arrived. Her words, still slow with awkward stops and starts, were a gift I so desperately desired. The doctors assured me the day would come, that even with Zoe's neurological diagnosis and weak muscles, her speech, though affected, would someday improve.
I was sure that if I knew what Zoe was thinking, why she was crying, and the cause for every smile, her words would bring my heart peace. Erasing the nights she cried and couldn't tell me where it hurt. The hours spent trying to recreate a smile, laugh or simple sigh of pleasure.
And then one day her words finally came. And oh, the very weight of them. The way her words linger, playing in my mind, over and over again. The way they overshadow my sleep, appearing in the dark of night as I return to bed after caring for Zoe.
A nurse? Be a Mom? Drive a car? In that half-awake state when dozing is meant to be delicious -- I work myself into a state of anxiety, one word at a time.
Drive a car?
Epilepsy, I think.
I have always encouraged Zoe to try everything, to find her normal and do things her way. She can recite our family mantra: "Try your best, have fun, take your time and own the room." Own the room for Zoe means do it your way -- with confidence. Like when Zoe ran relay at school field day in her wheelchair, carrying small water balloons in her lap and shrieking with the fun of it all. The way she dances in her walker, shimmying half circles and turns across our tile floor, or plays Wii with her sister while she makes up her own moves.
Zoe oozes fun and laughter and we live every simple moment, splash in every puddle. And every time a teacher or therapist sets a lofty goal for Zoe, she doesn't stop until she has passed it.
Zoe will be 12 soon, and this past fall her big sister Olivia got a Rainbow Loom. It was a shaky start, even for Olivia who is quick with her hands, yet slow in patience. I sat with her, rewinding the YouTube video and showing Olivia the basic pattern. Soon bracelets littered every surface of her desk and Zoe was custom-ordering jewelry from her sister, watching Olivia loom her way through the weekends, yet never asking to try.
And there I was, vacuuming up mini rubber bands over and over again and never offering to try and teach Zoe. And then it was Christmas, and Zoe sat down with her metallic markers and made her Christmas list. There were only five things. Number one, her list began, RAINBOW LOOM, written in sparkly gold.
"Really, Zoe? You want a Rainbow Loom?" I questioned, surprised that she had waited so long to ask. "I want my own," Zoe confirmed. I tucked the list out of sight, yet once again, Zoe's words lingered.
RAINBOW LOOM.
I kept picturing those tiny tiny knobs, the way you have to hold the loom just so to keep it still, the hook that catches the mini rubber bands and the way Olivia often snaps them off the loom sighing with resignation that, yet again, she would have to start over.
I read frequent Facebook status updates through the holiday season, from other moms lamenting about tiny colored rubber bands taking over the house, getting caught in the vacuum and covering bedroom floors and I thought "you don't know how lucky you have it" as I worried. I watched Olivia fill hours and hours of her weekend designing holiday bracelets, and I was so grateful because she could, and so sad thinking how Zoe couldn't.
And when Christmas came there was a big box filled with rubber bands and a Rainbow Loom under the tree for Zoe. It was the day after Christmas when Zoe asked to get started; I quickly checked out YouTube, prepared to custom-make bracelets on demand for her. Olivia taught us the basics, as Zoe watched each step. Zoe put her rubber bands on, slowly and sloppily. A rubber band would pop off, but she put another one on, pushing it down, never losing her patience as she worked her chosen color pattern. I would finish the bracelet for her, after Zoe would each time try to hook one or two herself. And then one afternoon while I was out shopping, Zoe made her own. From start to finish and supervised by her sister, it took about ten times longer than Olivia's bracelets, but it was all her own effort.
The next day I am working in the kitchen while Zoe sits at the table. She has decided to make a Rainbow Loom lanyard for her school ID. This is the length equivalent of probably 20 bracelets -- and I am a bit worried. She starts and starts again. A rubber band pops off, and she puts it back on. She gets stuck, calls for her sister for repair advice, and continues her own work. I notice she has her own method of fingers and hook working in unison.
The afternoon grows long. "Are you OK, Zoe?" I ask, as I watch her tired hands slightly tremble.
"Just fine" are the words that come from Zoe's mouth.
"Someday I want to be a nurse" are the words I hear in my head.
Zoe's lanyard grows long. It is the second afternoon at the kitchen table.
"Are you OK, Zoe?" I ask. It is her eyes that look tired to me today.
"This is fun, Mom. I am doing it my way, it's relaxing" are the words that come from Zoe's mouth.
"Will you teach me everything, so I know how to be a good mom?" are the words I hear in my head.
Zoe finishes her lanyard a few days later, and wears it to school the first day after winter break.
"I made it myself," I hear her tell her friend.
"Someday I'll drive a big car like this..." Are the words I hear in my head.
Later that day, I am alone in my car, the first time I say her words out loud.
Zoe wants to learn to be a mom and help people someday.
I speak her words quietly, as if in prayer. By releasing her words, I allow her dreams to come to life. The memories of her early years come quickly -- the diagnosis, the hospitals, all of the what ifs... and as I turn the corner in our neighborhood, I catch sight of my pink and purple Rainbow Loom bracelet against the steering wheel; it is one of the first Zoe made. It stays on my right hand as a reminder not to underestimate my girl, and all she has taught us along the way...
That even when there are clouds on your horizon, you can can still find your very own rainbow.
The post originally appeared on Suzanne's blog, Special Needs Mom.
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