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Ciarra Nichole's story
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I found out I was pregnant with my youngest child at the most inopportune of times. She was, to say the least, an unplanned child. I already had 3 other children, and I thought I was done. Surprise surprise, the first of many changes our lives would take because of this tiny new life that was just beginning.
Midway through the pregnancy, I got a phone call telling me my AFP had come back very low, an indicator for Down syndrome. I almost laughed out loud. I was already raising a Sister in Law’s child, who had significant handicaps. My best friend since childhood already had a child with Down syndrome, there was no way lightning struck that close together. So convinced it was impossible, I submitted to the Level II ultrasounds, gazing in awe at the beautiful baby on the screen. We joked about how she moved like her brother, often and fast. She had a swath of hair floating above her, another connection with the children at home, would she have the beautiful long hair her big sister had or sweet soft baby curls like her 20 month old brother? I saw her already, in my minds eye, a miniature Jesse, laughing and giggling, walking way too early. Or like Kristin, talking a mile a minute by age 1. Unexpected or not, she would be welcomed into our lives as the gift she was. Even the Level II ultrasound seemed little more than an indication of her heritage, we joked about her short femurs being more a cultural handmedown from her Canadian French Daddy than an indicator for Down syndrome. Other than those femurs, and being small for her age, we got a relatively clean bill of health, and headed home to await the next rung in the ladder of beautiful children running through our lives.
It sounds silly to say we forgot about the DS, but we really did. Life was busy then, never ending appointments for our little nephew, doctors and social workers and special teachers. We felt, quite honestly, that we were doing more than our fair share in terms of special needs kids. It seemed every week he came up with a new diagnosis. I just kept saying “I can handle that” and moving on.
On June 27 1998, my world changed. Ciarra Nichole was in a hurry to be born, and arrived at 4:02 PM, not kicking and screaming her way into the world as the others had, but silently slipping in, unmoving, blue and breathless. They held her up high and I caught my first glimpse as they carried her away to try to revive her. I had never heard a delivery room so quiet, and didn’t understand when the Doc told Jim to put the camera away for a bit. After what seemed an eternity, soft sounds like those of a helpless kitten filled the room. She was breathing, and I was thanking God. Jim grabbed the camera again and snapped away, he captured the first moment I laid eyes on her, but the camera doesn’t show the pit of my stomach, into which the world had just come crashing. It was as though every emotion came at once, horror, anger, sadness, relief, fear. The moment they laid her on my belly and she lifted her tiny head to look up at me, I knew. The first words I ever uttered in my daughter’s presence were “what are the odds this baby has Down syndrome?” She had a name, but suddenly her beautiful name so full of heritage and pride didn’t fit her, or so I thought. Would she deserve to be named after my favorite niece, the smart, bright, funny girl who had grown up riding piggyback through the mountains of Maine with me? Who was this little girl? Surely not the Ciarra I had dreamed of. I felt hot shame come rolling in, and then grief took over. She was whisked away to the NICU, to deal with a large hole in her heart. I began then and there learning that DS is not just “being retarded” it is physical and mental, and would affect my tiny girl in virtually every aspect of her life. Once pretty loose with words like “retard” and “spaz” I now felt the weight of their meaning deeply and personally. I didn’t want to know them. I wanted the baby I had dreamed of, the healthy blonde curly-haired little version of my son that I had carried for 9 months. I wanted to rewind time and go back, just one day, to when I was innocent, when the biggest decisions in my life were which preschool was best for Alex and was it time for Jesse to get his first haircut.
I ached with the weight of all the information thrown at me. I was suddenly not a normal mom, recovering from just another childbirth. I was a mom in a room alone, listening as all the other mothers around me roomed-in with their babies while mine lay sick and weak, like damaged goods too ugly for the light of day, locked away in another room I wasn’t able to enter without permission. I was a mom whose first visitors were the hospital social worker and the cardiac surgeon. Rather than flowers, they brought sad faces and more information on the ways my child was different. Instead of congratulations, I was the mom who heard “I’m sorry”, and I was the mom who acted tough but closed my door and cried silently into my pillow when no one was around to see. I didn’t want to be tough, I had to be.
Nine days later, pronounced “healthy”, I took my daughter home. I was scared to death. I checked her to be sure she was breathing, hated myself the times I let my mind race to the thought that maybe she had died and I could just not DO this. I spent more time hating myself for those feelings than I did reading books about DS, and that was a LOT. I learned to grieve the baby I had expected, the nurses had all told me this was healthy if not imperative, to forget the things I had imagined and remake my dreams. And so I watched through tears as the sweet, curly-haired girl of my dreams walked away in search of a mommy who didn’t have “old eggs”. I wouldn’t know, till many years later, that letting her go was a mistake, that love could merge those 2 little girls into one, and that by writing off the child I dreamed of, I was allowing myself to be controlled by fear. In many ways, I see Ciarra as a twin, one is the healthy typical child with a normal component of chromosomes. The other is a fiery go-getter with 47 chromosomes and a huge drive to succeed. But they are the same child, wrent only by the longings of their mother to fit them into a mold that society accepted. By letting go of the vision of a smart girl who could do anything she tried to do, I shortchanged her. I was constantly surprised, and shocked at myself for it. Why was it a big deal that she potty trained at age 2? Because “kids with DS don’t DO that”? They don’t whistle, either, and she’s been doing that for years at the ripe old age of 5. She does have Down syndrome, it is in every delicate feature on her beautiful face. But now I have come to love these features, to see true beauty in every part of her that labels her “different”. But with every new thing she tries and succeeds at, my heart hurts. Pride and fury walk side by side, she is so much brighter than they told me to expect. Why did I listen to people whose own prejudgements made them create a future for a child who should have been allowed to make her own? Aren’t I being prejudicial too, to be so surprised at every new and exciting thing she does? Why shouldn’t I expect it? Why was it so painful and wonderful at the same time to hear my 5 year old read me Eric Carle on her 4th day of Kindergarten? Because I allowed myself to believe that she wouldn’t, couldn’t reach milestones we take for granted with other kids. Why do we let ourselves be convinced that the babies we give birth to must be chased away like ghosts? Why can’t we have and love both children, the expected and the bonus? Who makes the rules here anyway? I have discovered that I let myself be convinced Ciarra was the “less-than” version of the child I wanted, and that was a disservice to her. She is all that I imagined and more.
And so now I find myself welcoming back the daughter I chased away 5 years ago, when I thought the smart, funny, beautiful child was no longer mine. And I find myself thinking over and over again “I’m sorry” to this child who shows me everyday that predicting the future is impossible. She didn’t deserve to go unrecognized all this time, with her Mom suddenly waking up to the truth. Ciarra is the same child I carried in my heart, not flawed and imperfect, but a little enhanced, and a lot more like my other kids than I expected. In welcoming back the baby I thought was gone forever, I have allowed myself to have the best of both worlds. Most days, Ciarra is like any other kid, delayed in some things to be sure. But she tries hard, and she succeeds often. I am learning that I have been talking out both sides of my mouth, that telling others they should accept her with no reservations means I have to do so too. As much as I adore her, Down syndrome has always been the biggest part of her to me, how she has “overcome” it has amazed me. What was I thinking? Suddenly I am seeing this child for herself, in no ones image but God’s. No labels, no “yeah, buts”. She is perfect, exactly as she is, and Down syndrome has nothing to do with it. What I didn’t realise is that I was only continuing the problem. I try not to be shocked by Ciarra anymore. Every now and then the ghost in pink pigtails comes back, though, and I have to reconcile her into this life and this child. It is like welcoming back a long lost relative who you always loved but whose place at the dinner table got taken up along the way.
I hope I can raise her to never think shes done so well that she can stop now, that she’ll always strive for more, reach higher, and succeed. But if she doesn’t, that’s ok too. She has already taught me more about myself in 5 years than I ever managed to learn on my own in 30. She is amazing, not because she manages to do it all in spite of the Down syndrome, but because she manages to do it all despite a mom who got a bit confused along the way. Welcome back, baby girl. Your mommy loves YOU.
Ciarra Nichole is 6 years old now! It seems like just yesterday she was born, bringing with her a world of mystery and enchantment. We have learned so many things in those 6 years, about unconditional love, acceptance, tolerance, and the true meaning of beauty. It has been easy to be Mom and Dad to this precious child, she leads and we follow. She has amazed us so many times with her ABILITY, somewhat of a surprise as her DISABILITY was what we noticed first. Ciarra has Trisomy 21, or Down syndrome. The child we expected was not the child we gave birth to. We had imagined blue eyes and curly hair, a rush to independance in the shadow of her big brother and sister. We thought we would have an innocent for only a short time, that like our other kids, she would hurtle through infancy and childhood and be gone too soon into the big kid world. Instead, we got the purest of souls, old in spirit, innocent of heart. Instead of rushing through the baby stages, we savored every step, relished every effort, and cheered madly as she sat taking it all in. Before we had time to blink, we were in love with her, and with the Syndrome that is such a part of who she is and yet still does not define her. She is a tiny sprite, every bit of the person we were told DS would bring..bright and enthusiastic, funny and gentle, loving and generous. She is also stubborn and ornery, impatient and demanding, and seems able to create a mess out of nothing at all. She is a gentle reminder that God still does hold mysteries in His palm. We are so in love with this little girl, so smitten by her almond eyes, passionately moved to activism as a way to honor who she is, and so forever touched by the families and children who have joined our lives as a result of having her.
Our local paper did a beautiful story about her:
Girl, Town Tie Knot of Caring
Ciarra is finishing up her Kindergarten year now. She has learned to read very well! It has been very exciting to see her progression. She has made some wonderful friends, even spent the night a couple of times. And no, she didnt call home once. :) She continues to amaze us with her very "normal" life, playing basketball and TBall and doing what all the other 6 yr olds do. She is an amazing and wonderful little girl. Not our baby anymore, but still our most amazing work to date.
Ciarra's Birth Story
Can a kid with DS play FOOTBALL?? Come see ;)
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