Madison. I have loved that name ever since I saw Darryl Hannah in “Splash”. I always wanted a little girl to name Madison.

Before my husband and I were married, a trip to the doctor resulted in bad news. Because of a surgery that I had had a few years ago, I had some scarring on my fallopian tubes. One was 100% blocked and the other was 50% blocked. There was a very good probability that I would not be able to conceive unless we went through invitro fertilization and even then pregnancy was not a probability.

We married in December of 2000 and didn’t really give much thought to birth control. I can’t begin to describe the joy and elation that I felt when the home pregnancy test that I took on February 17th , 2001 read positive. My husband and I both cried tears of joy that night when I told him. We were living a dream that we thought would never happen to us.

Because of my age, I was considered to be a high risk for any type of birth defect, so when I was around 15 weeks pregnant, my ob/gyn sent me to see a perinatologist. They were going to offer a level II sonogram to check for any birth defects. I remember so well the week before my appointment. It seemed that everywhere I turned, I saw a baby or toddler with Down Syndrome. I felt like God was trying to prepare me for what was to be. I told my husband the night before my appointment of my fears and he told me not to worry, that everything would be fine. He had such strong faith.

We went to see the perinatologist and he did the level II sonogram and I will never forget his words. “Your baby’s kidneys are dilated and the intestines have bright white spots on them. These are markers for Down Syndrome”. My world and I both fell apart at those words. We were offered an amniocentesis to get a definite diagnosis on the Down Syndrome and we agreed to have it done. We would have to wait two weeks for the results and those were the longest two weeks of our lives. I kept asking myself during those two long weeks “what did I do to cause this” or I kept asking God “what have we done to deserve to be punished like this?” When we received the call from the Genetic Counselor, she confirmed that “yes indeed the baby did have Down Syndrome”. The genetic counselor also told us it was a girl. I was getting my Madison, but it was not going to be the Madison I had always dreamed of. However, the Genetic Counselor said that at this stage in my pregnancy that termination was still an option if we chose to. After much prayer and thought my husband and I decided that God made Madison this way and God does not make mistakes. I had done nothing wrong during my pregnancy and we were not being punished. We were being given this child for a reason. We had faith that God knew what was best for us, so we decided on naming our baby girl Madison Faith.

Madison was born on October 12, 2001. It is quite common for Down Syndrome babies to have heart defects. Our Madison was born with AV Canal Defect. Simply put, she had two large holes in her heart and instead of having two valves, she had one. The doctors were wanting to be able to wait until Madison was at least 4 months old and weighed at least 10 pounds before performing the heart surgery. They would have to patch the two holes and make two valves out of the one. Our Madison had ideas of her own as she was hospitalized in our local hospital on December 23, 2001 with congestive heart failure. She was in that hospital until January 2, 2002. We then took her up to the Children’s Hospital on January 10th and she had open-heart surgery to correct the AV Canal Defect on January 11th, which was one day before she turned three months old. I remember so well the nurses taking her from my husband, to take her back to the operating room. I wanted to grab her out of the nurses arms and run away from there. We knew that God was going to be with our precious little girl during the surgery, but it was still so hard to hand her over to them. She was in surgery for 3 hours and 45 minutes, but it felt like 3 days and 45 minutes. Madison was a little trooper though! She sailed through the surgery. She was in the Pediatric Intensive Care Unit for only 3 days and then was moved up to a private room for 3 days. She was released from the hospital 6 days after her surgery. I remember one cardiologist in the PICU told us that if all of his heart babies did as well as Madison did, he would not have any grey hairs. He was completely grey haired!

Madison is still on two heart medications. We go to see the cardiologist about every 6 months now and we hope that one day she will be completely off of heart medications. There is a possibility that she may have to have additional heart surgery in the future, and we pray that she does not have to , but that is in God's hands.

Madison is the center of our world. She has a laugh that is music to your ears and a smile that will melt your heart. She is the apple of her daddy’s eye and of course, I’m pretty crazy about her too! She has us wrapped around her little finger and she knows it. She has learned that if she flashes us that gorgeous smile, she can get just about anything she wants. She is crawling, sitting up and has learned to wave “bye-bye”. We know that Madison is a little slower to do things than other children, but she will do them. She will just do them in her time. When she does accomplish something, her daddy and I are so proud of her, because we know just how hard she had to work to accomplish it. It is such a celebration around our house when she accomplishes something new.

I still question God. I want to know “What did we do to deserve to be given such a tremendous blessing”? I realize now that I do have my Madison that I have always dreamed of. I just never knew that Angels could live on this earth and be named Madison Faith. My husband was right. Everything has turned out just fine!

2005 UPDATE



Wow! My how time does fly. It seems that I just wrote the first part of my story yesterday, but it’s been almost 3 years ago. Madison will be 4 years old in October 2005. Where did my baby go? She is growing up way too fast for me. So much has happened in the last 3 years, and it’s been a wonderful 3 years!

Madison started walking when she was 22 months old. I used to think that she was never going to walk and it seems like overnight, she started walking and it wasn’t any time until she was running. She loves to play outside on her swing set, in her playhouse or in her jungle gym. Anything she can climb on, she loves. If anyone had told me years ago that I would be glad that my child was climbing up on something, I would have thought that they were crazy, but you know what? Even though it can get exasperating sometimes, having to get her down off of something, I’m so proud of her for accomplishing that feat. She loves to ride her tricycle and jump on the trampoline. She loves the water. It doesn’t matter if it is taking a bath, or swimming in the pool or at the lake, she is like a little fish in water. Her daddy is determined he is going to teach her to water ski in the next few years. She likes to watch Winnie the Pooh, Dora the Explorer, Blues Clues and she has learned how to take the tape out of the VCR and put another one in when a tape is finished. She likes to play with her cousins when they are all together. She gives them the biggest hugs and kisses, as she loves them so much and then the next thing you know, they are fighting! Just like your typical 3 & 4 year olds do!

Madison started PPCD (Preschool Program for Children with Disabilities) in October 2004. Basically, that just means that she was entitled to start school at age 3 and the day she turned 3 years old, she started school. She was in the Pre-K classroom with other typical children. It took her some getting used to, but after a while, she loved it. She loved the teacher, the kids, her aide, everything. She took to school like a duck to water. She did much better than I did! She learned how to carry her own tray in the lunchroom and she learned how to put it up after lunch, she went on field trips with her class and she rode the bus home after she got out of school in the afternoon. She did great. Madison started back to Pre-K just this week. I took her to school, fully expecting her to cry that first day when I had to leave her. Was I in for a surprise! She took off her backpack, went into the classroom and sat down at a table and started working on a puzzle, and pretty much ignored me from then on. It was like she was saying “Okay mom, you can go now”. She never cried a tear, but I more than made up for it! I was so happy that she was doing so well, but isn’t your child supposed to want to stay with you, and not go to school? Not my baby! She wanted to go to school.

Madison is still behind in her speech, but she is doing sign language. She has a sign language vocabulary of about 30 words or more, enough to get her needs met and we are able to communicate so that it helps to cut down on the amount of temper tantrums she might have as a result of us not being able to understand what she wants. She is learning new signs every day. Madison is a very determined, strong willed little girl and I have no doubt that she will start talking one of these days. It will just be in her own time and that is fine.

It is not always a bed of roses raising a child with special needs, but it’s not the end of the world either. Madison is just like any other typical child. She is a happy, strong willed, beautiful, energetic, busy little girl and we can’t imagine our life without her. It is hard seeing a child that is younger than yours accomplishing more and doing more than your child, but just remember that your child will accomplish the same things as other children. They just have their own timeline. You know, even after almost 4 years, my husband is still right. Everything is just fine!