My name is Michelle. I am a 33 yr old mom from Maine. I have 3 children. I had a daughter in Jan 1989, her dad walked out on me when I was pregnant, telling me to get an abortion or get out of his life. I was terrified, I almost considered it. I was very lucky that the place I went for my pregnancy test was a crisis pregnancy center. They gave me a little pair of knitted booties, baby blue, something tangible to hold onto while awaiting the birth of this very unplanned child. Her dad did leave, and has never seen her. My fiance has raised her since birth. It was a trying time, but I think it was preparation for the future.

As it turned out, having Kristin was the easy part. For 7 years after her birth, my fiance and I tried to have a baby. It just wasn't happening. I started college, determined to make up for the rotten childhood I had had. My daughter was the entire focus of our lives. It seemed she would be the one and only.

Months after starting college, I discovered much to my happiness, that I was pregnant! I had gut wrenching morning sickness, but happily put up with whatever it took to have my beautiful son. He was born in September of 1995, blonde and curly and fair. We named him Jesse, and he filled a hole we hadnt known we had. We settled into life, thinking our world was complete.

When Jesse was about a year old, we got a call. Our little nephew was in a foster home and needed a place to call his own. We applied for our foster license, and when he was 8 months old, the day before Jim's birthday, we brought him home. He would become our second son. He was a sweet natured, beautiful baby. But within days, at his first pediatric checkup here, he was diagnosed with cerebral palsy. I thought "I can handle that", and so we moved forward yet again, a little bigger, a few more appointments, but happy nonetheless.

When Alex had been here just 7 weeks, I discovered I was unexpectedly pregnant, AGAIN. It was quite a shock, from 1 to 4 children in about a year and a half. Our daughter Kristin was learning to share our time and attention in a big way. Again, we said we can handle it, and moved forward. We had great hopes that the new baby would be a girl, 2 of each sounded perfect to we who had thought we would never have more than one.

My best friend in elementary school had had a child with Down syndrome, so I never believed it could happen to us. The odds had to be extremely high. I was wrong. I was sitting in a hospital room with Jesse, who had been admitted the day after Alex had gone home for the very same thing...rotovirus...when I got a message from home...call your doc. I was exhausted, I had been a week in the hospital already, and facing yet another with my very sick little boy.

I called the doc, expecting a reminder that in all the craziness of my schedule lately, I had missed an appointment. He informed me that my AFP test had come back indicative of DS. I was shocked to hear the words. They asked me to come on up to the L&D floor to do a level II ultrasound, to look for markers that would give us a better idea. Jim and i arranged for someone to stay with all the kids, and up we went, expecting this huge mistake to be clarified and to go home to our growing brood happily free of this new worry. We couldn't fathom the thought that WE would have a disabled child. It almost seemed amusing then, after all, my best friend had already gotten the "bad luck"... we were surely exempt.

The doctor, Dr Bowley, did a very indepth exam, he looked for all the markers that might indicate DS. I remember lying on that table, laughing as we saw her tiny fingers on the ultrasound machine, amazed as usual at the technology that could give us this peek into the world inside me. All the Doctor could find were shortened femur bones, I looked to the side of the bed at her daddy and giggled. HIS legs were pretty short too. We talked for a moment about French Canadians and their notoriously short legs. We were begging to hear the words that would exempt us from further testing. SOMETHING to blame the AFP results on....anything but Down syndrome.

There were no other markers. As sure as we were of our dates, we convinced ourselves that it was a simple miscalculation. But, the AFP had been so low that the doc wanted to do an amnio right away. We knew that no matter what it said, we wouldn't abort. We drove home that afternoon giggling about his short legs, comparing notes on the beautiful child we had just spent several hours getting a preview of. So, we went on with the business of raising the kids, and adding on to ourhouse in preparation for the new baby to come. We now knew it was a little girl. We imagined her a towhead with blue eyes and curly hair, a healthy "normal" addition to our family.

On June 27th, 1998, I went into labor very suddenly at home. I told Jim, who was working on the addition for the baby's room. We figured we had awhile before we had to start the 25 minute drive to the hospital. Our other two were big babies, well over 20 hours labor each. I called the sitter, double checked my bag, made sure the BIG pink clothes were in the bag, and grabbed my camera bag. There was no film, so I told Jim we ought to go shopping before we went to the hospital. We couldn't know it then, but we were spending our last hours as the Jim and Michelle we had been up until that day. By the end of the day, we would become different versions of ourselves, affected forever by the overwhelming love we would come to feel for our incredibly special little girl.

We stopped by radio shack. I stayed in the car while he ran in. Then on to buy a new nightgown. I went in for this one. As I browsed the racks, the pains started coming hard and fast. We hurried out of the store and to the hospital. Jim walked me upstairs and settled me in, then went to park the car. By the time he returned, I was in hard labor. 12 minutes after getting to the hospital, our baby girl was born. 6 lbs 7 oz and not breathing real well.

They took her to the warming table and started working on her. I wasn't terribly concerned, I could hear her breathing. But as the minutes ticked by and they continued to work on her, I felt this absolute surety that there was SOMETHING very different about this baby than my other two. After what seemed an eternity, they finally brought her over to show me. They laid her on my stomach, and she raised her head. The very second she looked at me, I knew.

I can remember that moment with a clarity of thought like none I have ever experienced. In a split second I realised that the very thing I had been so afraid of was the thing that would become most precious to me. "Down syndrome" was just a phrase, and THIS was my CHILD. I said right away..."What are the chances this baby has DS?" they all acted like they were shocked that I would say that, until I reminded them of the AFP and Dr Bowley.

She was whisked away immediately. All the nurses kept telling me not to worry, she was fine. They all thought she didn't have DS, she had none of the usual features, except the slanted eyes. I saw them checking and rechecking the palms of her hands, in retrospect I know they were looking for the tell-tale sign of the Palmar crease.

I knew though. I knew from the minute I saw her. And what once would have devastated me somehow changed me. This was MY baby, not some "retarded child" I was seeing on tv. The things I had thought about my friend's baby came back to haunt me then. I was not anguished about MY child with Down syndrome, but about the many children with DS who had mysteriously come through my life prior to her, small messengers whose presence I had never acknowledged. I was ashamed. I loved this baby without reservation. I knew that I had some making up to do for my friend's child, for never having SEEN her as the unique and beautiful child she was. I was already learning about my own prejudices. I knew I had better start learning, and fast.

Nine days later, I took my baby girl home from the hospital. I told everyone who would listen about the DS. I was so proud of this child, I actually surprised myself. It took a few weeks for me to stop seeing the DS before I saw HER....but eventually it lost its novelty.

I still sometimes see these subtle features and think this is most certainly the most beautiful face on earth. My prejudice gets the better of me sometimes, I just can't see anything about Ciarra as a negative. I know my soul is different for having her. I am more open, more spiritual, more in tune with life.

My kids adore this baby sister who is almost 4 now. My rough tough little Jesse boy has never struggled with his sister's differences. My oldest daughter is 13 now. I go to her school and I immediately lose the baby to her friends. Ciarra is a popular little girl.

She attends a regular preschool program, potty trained before she was 3, and is a very independent little kid. She is funny and spirited, stubborn and witty. She can whistle already and whistles little songs all day long. She idolizes her big brother. She loves to draw, and at 3 can put all the details into a drawing of a face, she is rather amazing, but then she is mine so I see her with a touch of prejudice.

Ciarra has changed me so much. I sure have slowed down to enjoy the world more. She is perpetually hopeful, and most often smiling. She lives for Barney videos. She is the closest thing to an angel as I will ever see. Through her, I have started an online support group. We are a close knit community. Several of our members are moms I tried to lend a little hope to when I found them shortly after their diagnosis. Ciarra is helping me to make a difference in this world.

I hope my story helps even one family to think about continuing a pregnancy with a DS diagnosis. This thing I once so feared I am so at ease with now. I wouldn't change this little girl if I had the magic pill today. I'm honored to be her mom. If you are a mom expecting a child with DS, try to remember that the baby you are carrying today is the same baby you felt moving yesterday, the same baby you loved unconditionally the day before he or she was diagnosed. It is the words "Down syndrome" that scare us, the thought that our children will be slack-jawed, dull-eyed little people with no futures. Let me be the first to tell you that today, the world is so vastly different for these children.

Ciarra is no less healthy than any other 4 year old. She needs no special help or special schools. She is just a little girl who has been the best teacher I can ever imagine having. She is joy like no other. She is special, and she has Down syndrome. But Down syndrome does NOT have her.

Update 1/11/04:

Ciarra Nichole started Kindergarten in the Fall. Scary as it was, it has been the best thing for both of us. As much as I was sure this child would "be ok", I am more convinced than ever since she began school.

At 5 years old, this child they told me would be so unworthy of life, such a burden, has defied all predictions. She is in a mainstream Kindergarten class, where she holds her own nicely and is doing most things like any other child her age. The big surprise has been her reading ability! The child who would be so mentally retarded that she would never truly live is not only reading, but in the advanced reading class! Letters and words seem to be her strength.

So do relationships and tenacity. She has so many friends that sometimes we get tired of dragging her to playdates and parties. One little boy was allowed to invite 3 boys and 3 girls when he turned 6. He chose Ciarra. He CHOSE her. All those worries I had about kids shying away from her have turned out to be the exact opposite. She is like a magnet. Sometimes the other kids want to baby her, because she is still so tiny at age 5. But she lets them know she is NOT a baby. My heart soared watching her bring a book to show and tell and read it aloud. She seemed to know that they were surprised, and enjoyed her little spotlight. Her teachers have fallen in love with her. Many of them were afraid of Down syndrome when this whole process started. Now they are like me, grateful for the opportunity to know her. She continues to touch people with her sweetness, and surprise them with her ability.

Her speech continues to be her biggest delay, although it has come along so nicely this year. She is truly loving school, and seems to have become a child of this community in ways that warm our hearts. She plays Basketball right now. You cannot imagine my pride when Miss itty bitty grabbed a jump ball Saturday morning and took it in (who needs to dribble?) for a basket. The stands behind me erupted in cheers. I used to wonder if it was pity. It isn’t. She played TBall last summer, and hugged the coach everytime she rounded 3rd base. We discovered that he chose her to be on his team when an AFP indicated the baby his wife was carrying might have DS. The baby turned out to have the proper number of chromosomes, and I can honestly say that they were almost a little bit disappointed. While happy their baby would not have the health issues, they were touched beyond words by my funny, charming little girl. Needless to say, they are rewarded for that love by a "Hi Coach!" everytime they see her.

I continue to be amazed by the hearts such a small child can touch. She seems to have a way with people that I have never seen before. I wonder if it is her cheerfulness or her simple joy in everything. The optimist in me likes to think it is just Ciarra's magic, and that the lessons she teaches will stay with people. Maybe someday it won’t be so scary to have a child with DS. Maybe someday 95% of her peers will not be eliminated. For right now, I can only raise her to be a decent human being and a good friend. I can hope her academic success continues, and that she will change the world.

But in my heart I know that the best changes she has brought are within her own family, within me. I am blessed beyond words by this little girl. That blessing seems to know no end, it grows and grows and fills my heart daily. People may ask if it’s hard to have a kid like her. I wish they could know the truth. Sure, there are days I get tired. She asks a LOT of questions, and she is perpetual motion. But I wouldn’t trade it for the world. In terms of medical issues, all the demons that we were told we would have to hold at bay have all but disappeared. We go for an echo-cardiogram next week, her hole is closing up, we pray it will be gone soon. If it is not, if she has to have surgery, we know from seeing many of our friends kids go through it that she will be just fine. The physical stuff just isn’t an issue. Funny how we were told how dire it would be. In 5 years, we have learned that Doctor's just don’t KNOW. Parents know. Wow. Ciarra is five years old. FIVE?! Amazing. It tickles me to think how very much I have changed since having her. She really is a joy like no other.

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Ciarra was recently featured in an article at www.brilliantbaby.com