I have spent the last 9 years of my life trying to do my part to dispel some of the myths of DS. People first language was a biggie, that seems mostly accomplished now. No one in our lives wants the lecture, so "Downs kid" just doesnt come out of their mouths lol. There is still one nurse who calls Ciarra "A DOWNY"...after repeated requests not to. Recently, I called her supervisor. Let's see what she has to say to him on the matter?
Setting the bar for her has been a bigger challenge. It was one I learned not to do early on. She taught me to smarten up quickly the day I was in the living room on the phone and her barely 2 year old self dug oven mitts out of the drawer, opened the oven, took out the cookies, placed them carefully on top of the stove and announced..COOKIES DONE! Once I chased my wildly beating heart back into my chest, I sat staring at her, looking at her tiny hands again and again, wondering HOW she knew to use the mitts. HOW I could be SO stupid as to leave her anywhere near a hot oven. But even more, HOW on God's green Earth I could have ever believed she wasn't SMART!? Oh boy, that'll teach ya! I didn't know whether to beat her or hug her. In the end, of course, I hugged her. Then I bought an oven lock. But I never underestimated her again, and I refuse to allow anyone else to. This year she is in a regular third grade, with no aide. She does 3rd grade work for the most part. She is not treated very much differently than other kids her age. She sets her own bar, and she sets it high.
The biggest challenge for me has been overthinking her relationships. I wanted her to dodge that awful loneliness that I read so much about. I wanted her to have friends. I wanted...inexplicably, for her to be the HAPPY little girl with DS that everyone told me she would be. You know, "[i]they[/i] are ALL such HAPPY little people". That statement bugged the snot out of me. "They", who?! Ciarra wasn't a they. She was her, she, an individual. She was not a member of some subspecies. She wasn't in a herd or part of a pack. She..SHE...was my daughter. A daughter prone to smiling, to be fair. Ok, a daughter prone to...happiness. Ok, ok, so she was HAPPY. Not in the condescending, drawn out "Haaaaaaaaaaappy" kind of way so many people told me she would be when she was born and the diagnosis bestowed upon her. Not THAT kind of happy, not the clueless, dont-know-better kind of happy they meant. Ciarra was happy just living. She smiles a lot. She is...happy. She sort of exudes...happy. But, she can be pretty darn UN-happy sometimes too. She has a temper. She has even learned some words to show just how unhappy she can be. "Butthead" is a word that comes to mind.
But overall, this kid giggles in fits of laughter for a good part of her day. She is animated, blessed, blissful, blithe, captivated, cheerful, chipper, chirpy, content, convivial, delighted, ecstatic, elated, exultant, flying high, glad, gleeful, gratified, jolly, joyful, joyous, jubilant, laughing, light, lively, merry, mirthful, overjoyed, peaceful, peppy, perky, playful, pleasant, pleased, satisfied, sparkling, sunny, thrilled, tickled, tickled pink, up, upbeat, easy, easygoing, lighthearted, fanciful, resilient, sprightly, whimsical....you get the picture. Ok, darnit...she's HAPPY. ;)
This morning, Ciarra got all dressed up in her new knit dress and leggings from Gap. Put on her little black shoes with the sequins on them, and set out to make a Birthday card for her best friend. Today is that friend's Birthday, she turns 10. She is having a big pool party on Sunday, to which Ciarra is invited, along with a dozen or so other young girls. But today is special. It is her real Birthday. And she called last night, asking if Ciarra could get off the bus today after school to go do something fun to celebrate. Just the 2 girls and Jade's Dad. Ciarra has been, at times, jealous of the other kids who her BFF plays with. This morning, with a glint in her eye, she said "Just me?" And I said yes, just you. "Not Haley? Just me, no other kids?" Nope, just her. She smiled one of the biggest smiles I have ever seen. And I realized just how much it meant to her to be THE ONE, chosen because she is the BEST friend. It struck me how that is all any of us want, to be special to someone, to mean something. To be HAPPY.
The big bus lumbered down our road and pulled to a stop at the end of our driveway. Ciarra stood looking for a second, scanning the windows, looking for something. and then there it was. Jade was in the window, smiling back at her. Ciarra's hand shot out, pointing straiught at her "Jade, I'm going to YOUR house after school. JUST ME. Best friends!" I saw jade smile back, then stand up to make room for Ciarra beside her. Ciarra likes the window seat, and Jade is a good friend to let her have it. The last I heard was Ciarra excitedly telling the bus driver, "I'm going out with Jade, it's her Birthday. Im SO HAPPY."
Ok, baby girl. Happy is one thing your Mom can live with.
Dad’s Truck & Camper
3 years ago
1 comment:
Sounds like you are a very happy mommy, too! :-)
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