his was part of a speech delivered by Madelyn’s mom at the Annual Banquet of the Jacksonville Mayor’s Committee on Persons with Disabilities in October of 2011.
When Madelyn was 13-months-old, I had the opportunity to attend the national Down syndrome conference sponsored by the National Down Syndrome Congress (NDSC) in Sacramento, California. I was absolutely terrified to go. Was I really ready to enter this world? Was I going to have to talk with other parents or even scarier – other people with Down syndrome? What would I say???
But I decided to go. To jump in with both feet. To enter this world that I never dreamed I would be a part of as a parent. I told myself I needed to learn all I could about Down syndrome, because that was the best thing for Madelyn. So off I went to join the club shaking in my boots. And for me, personally, that was a huge victory. My experience there was one I won’t soon forget. Over the course of the long weekend, I heard lots of experts speak and gathered lots of information. I heard parents talk and soaked up even more. But what has stuck with me the most (it has been over 2 years since I attended this conference) were the speeches given by self-advocates – young adults with Down syndrome who addressed a conference center packed with over 2,000 attendees – and told the stories of their lives. They talked about their loving families and friends, about going to prom, graduating high school, attending college, having meaningful employment, living independently, driving (yes, driving a car!), marrying, and one young woman with Down syndrome was part of a relay team that swam the English Channel! How many people in this room think they could do that? I know I couldn’t. And I think that was what impressed me the most. Here was a young woman who could do something I couldn’t do, and she had Down syndrome! These are the stories of success have given me great hope, as a mother of a child with Down syndrome. That my child can live an independent, fulfilling, happy life and contribute positively to the world around her. I thought that my dreams for Madelyn changed when I found out she had Down syndrome, but they didn’t at all. Isn’t that what we all want for all of our children?
So, some of you may be thinking…gosh, her child is only 3 years old. How can she have many stories of success to share? Her child is still so little? Well, if you are a parent of a child with special needs or have worked with a child with special needs, you know that success happens a little bit every day, in tiny little baby steps. That the things that wouldn’t be such a big deal when raising a typically developing child become triumphs of epic proportion, evoking tears of joy, cheers of pure delight, sighs of relief, and sometimes even make a certain mommy do a happy dance. At my house, we clap and cheer when Madelyn pokes a piece of pancake with her fork and gets it into her mouth before it falls off. And if she takes a step independently or uses the potty, well, you can almost feel the earth shake from all the jumping up and down. It is success in its purest, most beautiful form, in my opinion. People say kids grow up too fast, but Madelyn really hasn’t. She is moving very slowly through her development and doing things at her own pace. This is one of the many blessings of having a child with Down syndrome – you get to enjoy every stage for a long time. Let me share with you some of Madelyn’s biggest successes.
Madelyn’s first success came on the day she was born, because she survived. We didn’t know Madelyn had Down syndrome, and we didn’t know she had two congenital heart defects before she entered the world. Her heart rate was irratic during my labor and plummeted as she made her way down the birth canal. I was later told she was delivered in just the nick of time. She didn’t cry initially. I kinda had a mother’s intuition that something was not quite right, and soon an extremely insensitive neonatologist muttered something about trisomy 21. It was literally minutes after I’d delivered my first child, so I was a little foggy on my medical terms despite being a nurse, but it came to me. Madelyn had Down syndrome. It was later confirmed with a blood test and a visit to a geneticist, but there in the delivery room, the doctor was pointing out all of the typical features of a baby with Down syndrome – low set ears, low muscle tone, extra folds on the eye lids, etc. The next 12 hours were a blur. I didn’t know if I could do it. I didn’t know if I could raise a child with special needs, yet it didn’t really matter. She was mine, she was beautiful, and she had me at hello. I knew I would do anything I could for her from the moment I saw her. I was her mama. The cardiologist came the next day and diagnosed Madelyn with Tetrology of Fallot & Common AV Canal. Simply put, she had 3 holes in her heart, her mitral and tricuspid valve were conjoined, and – most precariously – the artery leading to her lungs was narrowed. Down syndrome was going to have to go on the back burner. We had medical issues to deal with first. After just 4 days in the NICU, we took Madelyn home.
Doctors told us Madelyn could probably wait until she was 6 months old to have her heart repaired. This would give us time to fatten her up and get her heart as big and as strong as possible for the surgery. Madelyn, however, had other plans. At just 3 weeks old, Madelyn’s oxygen levels began to deteriorate and she started turning blue. She had emergency surgery at just one month and one day old. Although we’d bulked Madelyn up to almost 7 lbs., doctors were still leery of doing all of the repairs on her heart. Instead, they placed a shunt – an artificial tube – from Madelyn’s heart to her lungs to provide an additional pathway for oxygenation. The shunt couldn’t remain there forever, but it would buy us some time to get her bigger and stronger so surgeons could go back in and do all the repairs. She came out of the surgery just fine, so we, utterly exhausted, stumbled to the nearby Ronald McDonald House after spending several countless nights at her bedside awaiting the Monday morning surgery. At 3:20am, we got a call no parent wants to get, “Madelyn has taken a turn for the worse. You need to come right away.” She had gone into cardiac arrest. By the time we arrived at the PICU, she had stabilized. Thank God. This was Madelyn’s second big success. Madelyn’s Daddy is a Marine, and he said he’s never met anyone stronger than her. She’s a fighter. A survivor. A miracle.
After a couple of weeks, we took Madelyn home again. With more oxygen in her system, she had pink cheeks and more energy. She really started to flourish. She could eat more at a time, because she could breathe, and she started to gain weight more easily. We enrolled her in the local early intervention program. She received physical therapy and speech therapy. She cooed and laughed. She tracked objects with her eyes, could hold a rattle, and bat at toys. She rolled over from her belly to her back at 3 months old – even after having her chest bone severed during heart surgery. We celebrated Madelyn’s 6 month birthday. At 8 months she rolled from her back to her belly. We’d waited a long time for that milestone, and when she did it, my husband and I cheered so loudly she cried. We were relentless about teaching her basic sign language, and by her first birthday she knew 3 signs. We were so proud when she smeared chocolate cake all over herself and promptly asked for more by putting her finger tips together – which is the sign for “more.” Finally after what seemed like forever, Madelyn – at 13 months – was able to “prop sit” – which means, I could sit her in the middle of the floor for a few seconds. She couldn’t get in and out of sitting on her own, but being able to sit and play opened up her world immensely. She could sit and bang on a drum, stack blocks, or put rings on a stacker. She was getting there!
Madelyn’s second – and hopefully final – heart surgery came at 15 months old, and she came through it beautifully without any complications whatsoever. Success – and relief! The shunt was removed. All the holes were repaired. She has two valves where she used to have just one, and the artery going to her lungs was widened. Developmentally, however, Madelyn experienced a set-back, because once again, her chest bone was severed. She had to tolerate being on her belly again and learn to roll over. Consequently, crawling was slow in coming. She didn’t low crawl until she was about 20 months old and didn’t crawl up on all fours until she was almost 2. We got Madelyn a gait trainer so she could start bearing some weight on her legs, and by age 2 ½ she was able to start walking with a walker. We practiced and practiced with this walker all summer to build up her leg strength and her balance. One day not too long ago, Madelyn’s physical therapist assisted her in taking some steps between two benches. Eventually, she let go of Madelyn’s hand, so that she was doing it all on her own. This went on until the end of the session, when the therapist had Madelyn take 4 beautiful, independent steps into my arms for the first time. When we got home that night, Madelyn surprised her Daddy by walking 4 independent steps into his arms, as well. There wasn’t a dry eye in the room. Success. Now just a couple of months later, Madelyn can walk into her school with just a one-hand assist and no longer needs her walker. She is able to stand up by herself in the center of the room. And her record for independent steps is 8. Success.
Madelyn is an amazing little girl with an incredibly strong, independent, determined spirit. She loves Elmo, strawberries, books, music, and her grandparents – with whom she is surely snuggling right now. She has 75-ish spoken words and signs – many of which are understood by persons outside of her family. She also knows the hand motions to every verse of “Wheels on the Bus.” I hope if we see each other again in 25 years that I can tell you Madelyn has had continued success in life. I hope she will be in college and be able to live independently. I hope she will have good friends. I hope she will be happy and fulfilled. Afterall, aren’t those the things by which we should all be measuring success in our lives? Maybe she will even be able to swim the English Channel!