Saturday, June 27, 2009


It seems impossible that today my little girl is eleven years old. We are more than halfway to adulthood, we are no longer trying to figure out where we are headed, we just keep putting one foot in front of the other and doing it. Eleven years have zoomed by, it seems like only yesterday I was hearing myself say "What are the chances this baby has Down syndrome?" only a blink of an eye since I challenged a doctor who seemed to be questioning why I hadn't "done something about this?" (meaning abort her) and wasn't it just 2 seconds ago that I was snapping the photo of her in the red coat on the steps of the preschool?

In my minds eye, I see a million memories, first steps on a dirt road at a DS conference; the first time I held her in my arms and heard Karen Gaffney speak, promising Ciarra she, too, would have that love and support; tiny pink headbands on a mop of dark hair; the tear duct that refused to open for so long, leaving one beautiful pirate-eyed baby girl squinting up at me; the first of many times medical professionals would look at me in wonder and ask "she sure is doing well, for having Down syndrome." The realization that it wasn't Ciarra they were surprised about, it was their own preconceptions. I remember the early friendships, some of whom remain strong to this day. Girl Parties, precious little ones dressed in their Sunday best to celebrate life with Ciarra. I remember revelling in the early words-"SHE CAN TALK!" Finding big brother snuggled up with her in her crib, one arm protectively across her shoulders. I remember her first drawings, the time she spelled Mom on a little sliver of paper I still have somewhere. I remember the sparkle in her eyes the first time she tied her three. I remember days at the Cardiologists office, hearing the magic words "she is discharged". I remember tonsils and adenoids, and the struggle to wake up from anaesthesia.

I remember a hundred parents just ahead of me on the path, reassuring me about: atlanto axial instability (she didn't, but the testing was a nightmare); late teeth; first words; what leukemia looked like...was it possible? I remember her infancy and toddlerhood through a thousand photographs, documenting a life less ordinary, but so incredibly precious. I remember the terrible words of the terminating mothers, that "she is cute now, but you will regret it when she is older and the cute is gone." I remember finding out in detail what happened to over 90% of her prenatally diagnosed peers, and feeling completely ineffective and useless...except for the red coat picture...which seemed to be a living thing to so many people making the decision.

I remember the first day her tiny legs tried to climb the bus steps, and she turned and waved, my heart outside my body, little big girl off into the world. I couldn't protect her, shield her, anymore. I remember knowing she would be ok, when I saw her amongst her friends, smiling, one of the crowd. I remember tball, and basketball, when we tied a ribbon to the hoop to give her a visual reminder of which net was ours. I remember a million kindnesses, people who could have walked by that chose to stop and extend the hand of friendship instead, to celebrate every accomplishment with her. I remember the stands erupting when she got her first big hit in baseball. I remember the faces of her teammates, as they lined up outside the dugout to give her five, unscripted, as my video camera rolled while I tried not to cry from the beauty of it all.

I remember the struggle to make school work for her, the decisions, the battles, the victories. I remember walking into the lunchroom and thinking she might be sitting with the special needs kids at the table in the corner, then hearing laughter from a group of some of the most popular girls, who were laughing at something Ciarra said...not in a mean way, they were letting her tell a story, listening intently, reacting with love and support. I remember feeling like our lives are written in tiny sound bites of memories like these, and that building enough of them to fortify her for an uncertain future was important. I remember thinking that maybe it is time to stop worrying about the future so much, it seems obvious that today is the future we worried about, and she is doing fine.

I remember the phone call from my oldest, telling me that Ciarra "was a woman now" and being so grateful that she had been there, to make it cool, to not panic, to take it all in stride and help Ciarra see it as a good thing. I remember her dancing on the beach with her imaginary prince, twirling in the sunset, taking my breath away with her innocence.

I remember who I used to be, and how far I have come. I remember the days when "different" was anathema, when a child with disabilities scared me. I remember to be gentle with that me, because there are a thousand just like her all around us in the world who need gentle understanding and guidance as they learn about MY child.

Mostly, I remember to tuck every memory away, good and bad, somewhere in my mind. To look back when we look forward, to always remember that every single day will impact who she is and what becomes of her. I am not afraid anymore. DS is a part of who Ciarra is, but it has never defined her. She defines herself, and she will be who God intended her to be. Whoever that is is more than fine with me. Happy Birthday, big girl, I cant wait to see what the next 11 will bring.


datri said...

Happy Birthday, Ciarra! Wow, she is growing up so beautifully.

My 3 Kids said...

Happy Birthday Beautiful Ciarra!!!!!!

My name is Sarah said...

Beautiful post. Happy 11th Birthday Ciarra. I especially love the picture in your slide show in your pink checked hat. I hope you have a great birthday.

Monica Crumley said...

What a beautiful post. Happy Belated Birthday, Ciarra. You're a beautiful girl and it's nice to read how your mom has changed over the years, too. Thanks for sharing.