"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.
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.
Emmy and Zoe
Della and Sully
Jackson and Mickey
The love between this dog and this boy is as pure as pure love comes! Jackson and Mickey Dog. Best friends forever!!!!!
Julia and Dad
These two pictures are of our daughter Julia (9 months old) "talking" to her Daddy over Skype while he was deployed to Afghanistan.
Gavin and Riana
It was taken two years ago by our friend. It was actually not planned and she just caught the shot as I was stealing a kiss.
Talya and Sam
Love at first sight! This was taken 2 days after she was born.
Melina and Avi
This photo is from September 2010. I had just shaved my head for St. Baldricks in honor of my son Levi, pictured. He was diagnosed with stage 4 brain cancer (Medulloblastoma) in 2004 when he was only four. Surgery to remove the tumor left him mute, paralyzed and incontinent. He relearned all his life skills while undergoing multiple surgeries, chemotherapy and intense radiation. He is my hero.
This photo is at our wedding day, our daughter ran up to be with us at the alter.
My 6 year old Lucie with her then 5-days new little brother Eliot. Her expression was not posed, I had wanted her to look at the camera but he did a little sigh in his sleep and she said “aww” and turned her head towards him and closed her eyes. I teared up as I clicked the shutter, so magical.
Baby brother's first haircut
Julia and Chloe
Evan and Lexi
Logan, Marci and Lily
This is my definition of love. Sister love.
Nathan and Danielle
Emerson, Savannah and Tanya
Here are my two "everythings"-kissing me!!!
My 9 yo and Kira. A rescue from the Austin Humane Society.
Samantha, Lucy, Parker and Simon
Taken at the homebirth of my daughter, Lucy Nova, on 1/9/09 with her brothers Parker and Simon present and eager.
This is my son and his new born baby sister
Petra and Ivan
The attached photo is of my 3-year-old twins, Petra and Ivan. They're both on the autism spectrum, but Ivan's powers of speech are far more advanced than Petra's, and on some level he seems to know this. He makes sure she's not overlooked when we're doing family things, and occasionally takes her hand to walk with her when we're out. If she pulls away he reaches out to grab her hand again, to make sure she doesn't get left behind!
Joanna and Luke
This is a picture I took of my son and daughter while hiking.
Brothers and sister through adoption.
Carly and Brooklyn
Carly helps little sister Brooklyn enjoy a lollipop. Brooklyn has a gross motor disability (Rett Syndrome) so she can't use her hands purposefully.
Riley and Benjamin
This picture was taken one Sunday afternoon when we were leaving Church. My daughter had been getting upset during the Mass because she was missing her Auntie who had passed away earlier that year from cancer. She told her brother how she was feeling as they were leaving. He put his arm around her, hugged her and kissed her forehead telling her that everthing was going to be alright. As they walked the remainder of the way to our car, they held hands. It was so precious. They did this all on their own. This is the true definition of sibling love at it's finest! I just walked quietly behind soaking it all in. (And of course taking a picture like any good mom would :)
JJ, Mr. Teddy, Jeter and Minnie
JJ (boy) Mr. Teddy (the white butt) Jeter (the orange cat) Minnie (the kitten) We just had to put Jeter to sleep yesterday after 15 years of warmth and sweetness :'(
Holli and Chelsea
This is me and my daughter, Chelsea. If I ever doubt that I am loved, this picture reminds me otherwise.
This is a picture of my then 16 year old son and his 12 year old sister about 6 weeks after she was diagnosed with a terminal brain tumor. It is the first day of school and I think it's easy to see the tragic love he feels. Hope Alizah Kimlee Fuller 6/26/97 born 7/29/09 diagnosed with DIPG 3/10/10 died
My sons... love how affectionate they are with each other.
Aiden and Ryan
Aiden gets wrestling tips from his big brother, Ryan
Emily and Elliot
This is a picture of my son, Elliot and I on his first birthday. He had just finished digging into his birthday cake and I was giving him a drink of water. We have a really special connection. I'm a single mom and he is the best thing that ever happened to me. Love!!
Caught this picture of my husband and (at the time) 2mo old son catching a cat nap. Look at the smile of pure satisfaction (love) on my son's face. Neither would have wanted to be any other place in the entire world.
Ben and Lucy
Elias and Jackson
Big brother (Elias - 2.5 yo) meeting baby brother (Jackson - 1 day old) for the first time.
Love is the first of many a newborn will take...first steps...
The moment I met my twins.
Angela and Dad
This image was taken moments after mom, who had been looking on, had *that moment* - that moment when you realize your entire world has changed – that moment as a new mother that takes your breath away. Her eyes filled with tears of overwhelming joy and love and got both of us, the dna photographers, and the daddy to well up – the only one not crying was the 8 day old little angel in daddy’s arms.
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