And just like that her tone shifts. Her body language softens and she reaches out to touch my chin with the hand that was methodically rubbing the homework sheet the second before. I pick up the pencil she slammed down and offer it back to her as we make eye contact and I smile and hug her as she pulls her bottom back in from its signature bird perch pout. After a deep breath and a good hug, I ask her if she’s ready to keep working. She nods and fidgets a bit in her chair and with the paper, and then looks back at me.
“Yes. I’ll get you a drink after we finish this problem. First math. Then drink. Ok?”
Nodding, she positions her pencil. “Math. Kefir. Ipad.”
As she pushes the paper toward me, I reread the question and pull out the counter animals to show her the math problem and use my finger to point to the illustration on the page. She touches each animal in turn and starts counting from one.
“Mmmm. Look again. Which number is bigger?”
“Good. Count on from 7. Eig….”
As I pause mid-word, she picks up the pace and slides three bears over to the seven dinosaurs and smiles proudly as she writes the 10 in the blank space. She can do this.
It’s not easy.
Some nights it’s not fun.
But she can do this.
And we can to.
And so we do.
#DSAwareness #31for21 #DSAM16 #downsyndrome #ordinaryafters #downsyndromeawarenessmonthM
Seven is twirling and running and besties with pinky promises and BFFs and side pony-tails and Justice shirts with skorts. It’s second grade and hip-hop dance class. It’s learning to read and write while staying in the lines. It’s new reading glasses and soccer games and watching other people open presents on Youtube. It’s Magic-clip dolls lined up and Winx Club fairies driving cars. It’s Brownies and gap-tooth smiles. It’s playing cars with the little sister and stealing the big sister’s fairy books. It’s hogging the IPad and writing the grade of WOW on the homework before turning it in. It’s sitting with pals rather than parents at the volleyball game and getting up and trying to make toast and pour kefir in the morning before the parents wake. It’s playing Taylor Swift in the car and singing along to Taylor the Latte Boy. It’s pancakes with smiley faced whip cream and sprinkles and living room sleepovers with sisters. It’s knowing the words in your head but not being able to quite articulate the answer in time with the others and standing back to watch until you can get it right without faltering. It’s being independent in the pool with the help of a floatie and scheduling a first orthodontist appointment. It’s running off with the big girls at family camp and dancing when you feel like it. It’s holding the babies at playdates and your sister’s soccer games. It’s finally speaking in full sentences and tween jargon. It’s a twinkle in your eye and sass on your lips. It’s only wanting your uncle and your dance teacher’s husband at your birthday party. It’s a bedtime lovey named Tigey that you call a bear. It’s after school tutors and speech and occupational and physical therapy appointments each week. It’s more speech and occupational therapy and resource classes in school. It’s a memorized lunch pin and getting yourself out of the car without too much complaint in the drop off line. It’s a summer of day camp and a hospitalization and too many homedays for pneumonia. It’s visits with grandparents and aunts and uncles when the rest of your family gets sick too. It’s cheering your spelling words and then sword fighting them. It’s asking for babysitters and movie dates and manicures. It’s outgrowing the need for your pediatric cardiologist and the ongoing quest for the perfect ADD medication. It’s society seeing you as disabled and your friends and sisters seeing you as not having a disability. It’s drinking through a straw but being cool enough to carry a water bottle to class. It’s digging for hours in the sand and eating all the croissants your tiny hands can hold. It’s pulling your own suitcase in the airport just as long as it has your Barney pillow tucked in to the pocket. It’s refusing to let your mom cover you at bedtime and insisting it be your dad. It’s you.
#DSAwareness #31for21 #DSAM16 #downsyndrome #ordinaryafters #downsyndromeawarenessmonth
31 for 21.
Or so they say. And so I’ll do.
Each October, families that blog about life with Down syndrome commit to a daily exercise of blogging every day (31) in October to raise awareness and acceptance about Down syndrome (T21). For the past seven years I have happily jumped in the fray and shared pictures, stories, resources and information about Down syndrome. I’m entering my eigth year of this beloved practice. The first two years that I joined 31 for 21 after the birth of the Quail, I continued on my typical daily blog posts at that time, taking care to ensure that I did post every day for the month. I was still able to maintain a semblance of order and time to devote to daily writing with the categories I initially organized my thoughts around. The third and fourth year, I had not had the time to post daily musings, in a good while, but I still had an extensive archive of photos I hadn’t had time to edit and share yet. So, I posted mainly images labeled with little tidbits about the Quail that make her both extraordinary and ordinary.
I hit my peek in 2013. In that last year, I LOVED participating. And still have every intention of making it into a book for myself. Our friend Molly Flanagan had shot some wonderful lifestyle photos of our family and our daily goings-on and I had told her that I loved them so much that I could narrate a story about each image. And that is what I did. I continue to go back to these photos and narratives. They are a gift- each single one. And I reread and still nod along as if I’m reading someone else’s writing and story. I still find myself thinking- yes! That’s what MY life is like. And then others shared with me how they felt about this project and how they could relate to it. And then writers that I love shared it with their friends. And then wonderful things happened. I dug out my brave bones, like I tell my children to every day they go out into the world and requested a fundraiser at my work for Down syndrome awareness and the Buddy Walk. And together we raised over $1700. And the next year we did just as well. Both times I was humbled, and felt so proud to have my village lift me up and help me help myself and others. The response was unexpectedly overwhelmingly positive. People I hadn’t had the pleasure to meet in person contributed and took the time to get in touch to say how Down syndrome is a part of their life and how lovely and inspiring our Quail is. The good people at my work took it upon themselves to write up our advocacy efforts in our statewide celebration for a nomination for a humanitarian award which we won this spring. And later that summer I was informed that the nomination was then passed on to the regional competition and we won that as well! If I’m going to be recognized by my workplace- there is no greater joy then realizing that while they appreciate my work- they also appreciate my heart and those it belongs to. The next year we did the same fundraising and actually had friends join us for the walk. I managed to write and then, well then the big void came on, but all the voidier than even the years past. And in 2015. It was even harder to find the time and energy to write. And I only managed to write for seven days.
But as the saying goes, I’m going to stand up again. Because you only fail if you fail to try. And there’s a little girl counting on me. On us. On every single one of us. And if she can stand up and try again. So can I.
#IDSC2016 #DSAwareness #31for21 #DSAM16 #downsyndrome #ordinaryafters #downsyndromeawarenessmonth