I remember the excitement we had, as we jumped up and down with joy, at the announcement of our pregnancy! We had two beautiful boys, and I was secretly hoping for a daughter! I wanted to have the special mother/daughter bond I shared with my own mom. The picture in my head included pink dresses and hairbows, dance lessons, picking out wedding dresses, and sharing the special bonds that mothers and daughters share when she raises children of her own someday! I couldn't wait!

I'll never forget the day I got the call..."Yes, your amnio came back showing that you are having a girl. Unfortunately the tests show that she also has Down Syndrome. You need to come in and have a high-level ultrasound to check for abnormalities in her heart, as they are common in children that have Down Syndrome. They can greatly affect her quality of life."... the tears started to roll, the sobs, as I felt many of my dreams die that day.

The following days brought more discouraging news---news that she had a rare heart defect called "Unbalanced Atrioventricular Canal Defect". Words came crashing in on us with dire predictions of shortened life and heartache to come. But, as we looked in the ultrasound and saw her -- her little face, her hands, feet, and even her malformed heart, we knew that her life was HER'S to live, and that we would help her find her way in this world. We would be her advocates, her voice and love her with all our hearts.

The months that followed, prior to her birth, were full of my questions, reading, interviewing Early Intervention programs, meeting heart surgeons, and lots of tears too ... sometimes it would just hit me, like a fist in the gut, this was happening to ME! It wasn't some, "Oh, did you hear about so-and-so, isn't that too bad?" -- it was ME, MY family, MY child, MY little girl named Madison. Her name means "strong fighter" and we knew that's what she would have to be to get through the hurdles that lay ahead.

All the tears turned to tears of joy, on Oct 19th, 1997, when Madison Laree entered this world -- she turned pink almost right away, she started sucking her fingers and was doing so good that she came to rest on my chest as we snuggled for hours. She had these little rosebud lips and these beautiful sparkling blue eyes ... she was a gift to me, to our family, and to this world.

Her brothers bonded with her as the held her, tickled her, watched "Barney" with her--the little sister they had prayed for was here in their arms! She loved music so much -- "You are My Sunshine" was her favorite song! She would pound out her tunes on her little keyboard. Her rattle would be a flyin' and her feet would "clap" to the music!! Her bouncy seat and her "Johnny-jump-up" were her favorite spots and she kicked furiously and would be so proud of herself! She loved to sing along with choir at church, and her little voice could be heard joining in!! She started rolling all over the place and signing simple signs to let us know what she wanted -- "Eat" was her favorite sign! Bathtime was always so much fun as she would pump her legs and get the water splashing! Lying on Daddy's chest was her favorite place to be -- as she looked up at him adoringly.

JOY ... STRONG SPIRIT... LOVE ... TENACIOUS ... these are words that come to mind when I think of what defined her life. It certainly wasn't "disability" --it was her special ability to touch and change and warm the hearts of all around her, from the nurses that cared for her at Kosair Children's Hospital, to the stranger in line at the pharmacy -- she had a special way about her that pulled you in. If you got to know her, you would find yourself being changed, your pre-conceived notions of Down Syndrome falling away, your eyes being open to a perfection that isn't found in the healthy little girl of my wishes and dreams -- but in the smile of a little girl with profound health challenges that is cheerful and full of energy and spirit. I found perfection, beyond my wildest dreams, in her blue eyes.

Her life ended in my arms, on April 25th 1999 -- she was 1 yr, 6 months, 6 days old. She had fought so hard, but pulmonary hypertension had destroyed her chances of repair and she died of heart failure. As I held her body in my arms, I knew that being her mom was probably the most important role I would have ... I was thankful for having had the chance to share in her life, to be given the gift of being part of her journey. I wouldn't trade one minute of her life for all the riches in the world.