Today is Andrew’s 10th birthday.

Andrew FevangI will not wax nostalgic about August 14, 2003 being the best day of my life, because it was not. It was the day of that huge blackout that the entire northeast experienced…I was alone in the hospital, no lights, no a/c, and worried about my 5 yr old daughter. But more than that, the doctor told me he wanted to test my newborn for Down syndrome. I was shocked. And I was alone. And then they left me there alone with Andrew. It was hours before anyone was allowed upstairs, and I was terrified. And exhausted. And hot. And alone.

No, August 14, 2003 was not one of my best days. The past ten years with Andrew, however, have been an AMAZING journey! So in honor of his 10th birthday, here is my list of the Top 10 things I just love about my Andrew:

10. Those eyes. I just love those beautiful, Brushfield spotted, blue eyes. I love how big they look behind his glasses, and I adore how they slant up when he smiles one of his whole-face smiles. And that crooked smile. The way his bottom lip comes up on one side of his mouth…I’ve never gotten it on film, but it melts my heart. Every time.
9. His determination. It might take him twice as long to learn something, but he’s going to do it…just try to stop him. A few weeks ago, when practicing shoe tying together, I was frustrated that he wasn’t focusing, so I told him to just forget it- we will try again when he is ready to learn. He knew I wasn’t happy with him. He walked out & went to his room. 5 mins later I heard him talking quietly on the stairs. I peeked around and there he was…with a sneaker in his lap, telling himself what to do, step by step, practicing. I hugged him and we tried again. And again. The next day, he got it! He was so proud!
8. Full body hugs. If you’ve ever been hugged by Andrew…reallllly hugged by Andrew, you know what I’m talking about. They’re amazing.
7. His compassion. Andrew can be in the middle of the best play date of his life, then spot a complete stranger with a cast or crutches, and will drop everything to make sure that stranger is ok. I can’t tell you how many times he’s asked my permission to ask people in the grocery store, park, McDonalds drive thru window, etc what happened and if they’re going to be ok. He will put his hand on your shoulder and gaze into your eyes and ask with the kindest tone. We should all be so kind.
6. He’s such a boy. Going into his sister’s room and farting in front of her is just hysterical. She screams, and he laughs. Perfection.
5. He’s a Momma’s boy. Thunderstorm? “Mommy, we need to snuggle on the couch! Get a blanket!” Bedtime? “C’mon, Mom…time for us to read.” Boo boo? “Mommy, you need to kiss this…quick!” He is just delicious.
4. Hopsital. Backlard. Smackle. God help the speech therapist who teaches him the correct way to pronounce hospital, backyard, and spackle. I love those mispronounced words, and I hope he NEVER learns how to say them correctly!
3. Tara’s biggest fan. Andrew ADORES his big sister. Most of the time. The other times, they’re fighting. But when she swims or cheers or sings, his heart swells with pride, and he can’t contain it. He will cheer for her (“Go Tara! That’s my sister!”) louder than any adult in the room. Complete strangers smile …every time. The moment she is done, all he wants to do is run to her and hug her. It’s beautiful.
2. The little things. He slows us down to enjoy playing in a tide pool at the beach, or look to see if the Ninja Turtles are in the sewer today. We discuss the possibility of Bigfoot living in the woods. Does he hibernate? Would he go up north in the summer months since he has all that fur? There might be dinosaurs in Virginia. Next time we drive there, we should look. And bring broccoli. Dinosaurs like broccoli. So much fun!
1. Andrew’s dance moves. That kid can take over a dance floor. Drop it like it’s hot, Andrew. Shake what your momma gave you.

Happy 10th birthday to my Andrew! Mommy loves you!

Miracles and Dreams

It began on January 1, 1991 when Georgia Tech won their bowl game which, in my book, made them the National Champions. During the next three weeks, my son would turn three times before landing in a transverse position causing him to be delivered via C-section on January 22, 1991. I suppose that was his way of celebrating.

In the recovery room the pediatrician came in and said that he believed that our son had Down Syndrome. It was hard to explain how I felt at the time. My husband, Ken, was in Saudi Arabia in a war that was then six days old. All I can remember was crying and saying, “How do I tell my husband? He’s in Saudi Arabia and has no idea what to expect.” I had seen Donovan and he was everything I had dreamed of. I knew if Ken could just see him everything would be fine.
Through the pediatrician’s recommendations and the help of the Red Cross, Ken was able to come home for a couple of weeks. He believed Donovan was his dream  come true also.

Time went by and the NCAA road to the Final Four concluded with Duke winning the championship. Donovan would celebrate by turning over for the first time.
Donovan learned to smile as baseball season started. Each time I would say, “Go Braves,” Donovan’s face would light up. When Michal Jordan showed off in the NBA playoffs with his hand-to-hand pass in mid-air for a jump shot, it made news for days. During that time Donovan learned to pass objects from one hand to the other. What an exciting time that was!
Baseball season heated up and Donovan learned to tomahawk chop with his mom and dad. The braves were having what is now referred to as their Miracle Season. I don’t think I have ever been so sad at a ball game as I was when the Braves’ Miracle Season ended with a loss in game seven of the World Series. It was a night I will never forget. But the next morning I went into Donovan’s room and saw a true miracle looking back at me and smiling.

For our favorite ball teams, 1991 was full of miracles and dreams come true. Players never quit. There was no such thing as failing. In our home, nothing could have been more  true.
In 1992 the Duke Blue Devils won their second consecutive NCAA Basketball Championship and the Chicago Bulls won their second in a row also. During that time Donovan learned to put toys in a slot and even stand up.  Now that baseball season has started again Donovan has learned the Braves’ chant to go with the tomahawk chop.

As each season begins and ends players and fans reflect on dreams and miracles.  Our family has a constant reminder of the dreams and miracles that come true each day. He is living in our house. His name is Donovan.

My Life With Superman

30 August 2006, Camp Pendleton California, was a day that will stay with me until my heart no longer beats. It was the day that I found out that my gorgeous wife Jen had given birth to Superman, only I didn’t know his true identity at that time. Evan was set for a normal birth, but flipped at the last minute forcing a C-section. After the delivery, Evan was briskly taken to the nursery as my wife was put back together and stapled back up. I went to the nursery to take pictures of our little bundle of joy to show to my wife, since she was not able to see him very long. As I snapped away and talked to my newborn son, a doctor walked up behind me and asked “Are you the father?” Of course I told her yes. She told me he was beautiful and started making small talk. After a few minutes she asks “Have you ever seen a show called Life Goes On?” I said “Yes”, not even looking in her direction as I continued to stare at my son sleeping. Then she asks me “Do you remember the character named Corky?” I was getting annoyed with this woman now, so I said “Yeah, why?” infused with a great deal of sarcasm. The next statement she made caused me so many emotions at one time, that I’m surprised I was able to even function on my own. “Well, that’s what we think your son has. We still hafta run tests, but I’m fairly confident what the results will be. I’m sorry.” After staring at my son, trying to see this “Corky” thing she spoke of I asked a question. “Have you told my wife yet?” She replied “No, why?” I asked her to please wait until she was lucid and I would tell her. She didn’t listen and told her anyway.

As my wife and I cried, I wondered what kind of life Evan would have. I also selfishly wondered what our life would be like. The doctors then told us that his oxygen level was low and they would be flying him to San Diego Children’s Hospital. I prayed more over the next 2 days than I can ever remember. I asked for the strength to be a good father to my son, to allow him to have an easier life than I expected him to have, and for the world to be more accepting of him. I had known people with special needs and even grew up with my uncle’s brother, who had Down Syndrome. I still knew nothing about it. I spent a lot of time in the hospital chapel while waiting for my wife to be released. After her release, we went to SDCH for the first time. After testing was done, confirmed and explained, we focused on getting our son out of the NICU. We were told he would have trouble doing everything. He would have trouble feeding from a bottle; have low muscle tone, trouble learning everyday actions. We were pretty much told he would be a vegetable and his life would be extremely hard, as would ours.

Ev couldn’t leave until he could eat at least 2 ounces in a single feeding, and he couldn’t finish a single ounce. We received a call about 4 days later telling us our son was being transferred to Tri-City Medical Center, which was about 30 miles closer to us. We asked why and told us that they couldn’t keep up with his need for food along with the other babies there. He had woken up and was eating 4-6 ounces every 2 hours! He was doing better in Tri-City, but his oxygen was still low, and of course he couldn’t leave until he was breathing better. His heart test came back good, which was a HUGE relief, but we wanted him home. After 2 days of being there, the doctor told us that his oxygen was all that was keeping him there. He told us this as Jen held him. It was if he had heard him that afternoon because we received a call the next morning telling us he was ready! We asked how and we were told “No matter how much tape we use, Evan keeps ripping the nose tube out. When we checked after 4 or 5 times, his oxygen was above normal.

We took our son home that morning and he has surprised us every day, going against the odds one milestone at a time. We were told he wouldn’t drink out of a sippy-cup. They were right, he went from a bottle to a straw cup. We were told it would take a long time to use his own utensils. Wrong again. Crawling, walking, talking, stairs, and every other milestone. Evan has destroyed most of them and is ahead of his peers with Down Syndrome for his age in most categories. We gave him the nickname Superman after he fought so hard to leave those hospitals and he has lived up to the name for over 6 years, going through 6 surgeries and surpassing goals set for him. Living with a super hero has been rewarding to say the least. I see what my son goes through and know that my problems are so insignificant compared to day to day struggles. I can be having the worst day and a greeting from my son cures it all. Evan has a way of bringing people to together and having immediate impacts on their lives. Evan has forced me to be outgoing and has softened my heart from the stone it once was. He has forced me out of my comfort zone time and time again. I have a greater appreciation for life and I believe I’m a better father, along with a lot of help from my wife.

Superman has shown me that anything is possible, as long as you think it is. I have no idea what else he will do to surprise me, but I’m looking forward to the journey. I’m proud to say that my hero doesn’t stalk the shadows of Gotham or swing from the skyscrapers of New York City. My superhero eats Goldfish crackers and drinks Sweet Tea in Beulaville, North Carolina. He attends Richlands Primary School and loves to watch Chuggington, Jungle Junction, and Jake and the Neverland Pirates. Everyone should be so lucky to have a super hero like mine in their life. Superman is real and he quietly saves lives everyday. I love you Evan.

SSgt Don Toro

Evan’s Story

I found out I was pregnant with Evan in January of 2006. I have had three high risk pregnancies due to many different complications. I was offered the Triple Screen at the suggested time period. That would be the only test I would have that day. I looked at my husband and said, “I am not getting a blood draw for one test. I have two other children who are perfectly healthy.” So, the pregnancy went on like my others with no idea that Evan would be “special”. The day I scheduled my C-Section for mid September I went into labor with Evan. We went to the hospital and everything went as planned. As I was in recovery the pediatrician that was in the room while I delivered looked at my husband and said, “Have you ever seen the show “Life Goes On”? My husband told her he had. She asked if he remembered Corky. He said yes. She replied, “That is what we think your son has.” He asked them to wait until the medication wore off to tell me. Well, they didn’t. As soon as she told me, I cried. No one else came to talk to us. Our son was being transferred to Children’s Hospital because his oxygen levels were low. Finally, about 12 hours after he was born the head pediatrician of the nursery came to talk to me. He said if they knew what I looked like they never would have made the call about my son having Down Syndrome. I demanded the chromosome test. I was released within 36 hours of having my son. I did not want to stay at Camp Pendleton when my son was in San Diego.

After we confirmed that Evan did indeed have Down Syndrome, it felt like my world started to spin. There was so much information. So much negativity from the doctors. My first thought was “what is his life expectancy?” After doing research I found out that it has grown over the years. Relief set in once his heart was cleared. Now, to only get off the oxygen. I remember telling my sister that I knew I wasn’t bonding with him. She asked me why? I told her I was scared. He didn’t seem to be improving. I hung up the phone, got down on my knees and looked up into the sky. I said, “Please God, if you are going to give me this child than give him to me. Do not take him away.” Within a few minutes the phone rang. The caller id showed it was the hospital. I would shake whenever I saw that number. I automatically assumed the worst. Well, to my surprise the nurse told us that Evan pulled his tubes out of his nose AND the machine and was doing fine on room air. He would have to have a sleep test, but if all went well, he would come home the next day. I screamed! My baby was finally coming home. I also jumped in feet first to find out all I could about Down Syndrome. I know I cannot know everything, but I thank many people I have talked to along the way for their advice and stories that have helped us.

Evan is a lot like my other children except that hitting the milestones took a little longer and had a little more help. I thank God every day for the therapists and support system we have had through the years. I refer to him as my hero. He has been through more in his 6 short years than I have in my life. His kindergarten teacher told us that because of seeing him deal with problems and overcome difficulties every day she decided to be open about her having Multiple Sclerosis. Evan has made an impact on a lot of lives. Because of him my older children are more accepting of kids with special needs. They will gladly tell their friends and strangers what having Down Syndrome means. They will also ask you not to use the “R” word around our family. Yes, things are hard sometimes but just like any child we get through our phases and go on with life. We have screamed and yelled with joy when he goes on the potty. I have had tears stream down my face when he learned to twirl spaghetti. Hearing Mommy come out of his mouth was one of the greatest moments of my life. I will never forget the shirt I got from the EFMP program of San Diego (which I still have packed away) which reads, “All Children Are Special.” I agree! I have seen so many things these past six years that makes me realize how I took for granted the small things in life. Now I learn to appreciate things a little more.

I can still remember saying “why me” when he was born. Now, I simply say “why not?”

Chesser Family

Our Story:

I always knew that I wanted to have a big family. My husband, Matt, and I were thrilled when we welcomed our first son, Benjamin, into the world the day after he returned home from Afghanistan. We figured we would try for our second baby in a year.

Little did we know, God had other plans. A mere five months later, we realized that I was pregnant again. Whoops! Unfortunately, Matt already had another deployment in the works. We knew he wouldn’t be home for the birth this time. I’d be doing it all alone.

At twelve weeks pregnant, I got the nuchal translucency screening done, just like I did with Benjamin’s pregnancy. Both times, I elected to do it solely for the opportunity to get an ultrasound done. I wanted to see my baby. To my shock, the screening came back positive. The ultrasound, plus the blood test, gave me 1 in 6 odds that the baby would have Down syndrome. My obstetrician assured me that in all likelihood, the baby would be “fine” and that these were almost always false positives. Nevertheless, I was referred to a maternal-fetal medicine specialist in Wilmington to get a higher level ultrasound.

This would be the only appointment Matt was able to attend. I was about 15 weeks pregnant, and Matt was due to deploy in less than a week. We found out we were having a boy then. They also found several soft markers for Down syndrome, and now it was decision time: do we get the amniocentesis done, or wait it out? An amnio is performed by inserting a needle into a pregnant woman’s stomach, and then into the uterus, where amniotic fluid is withdrawn. While I wanted to know whether or not our son had Down syndrome, the thought of the procedure honestly scared me. What scared me even more was knowing I would be doing it alone: Matt was leaving on Sunday, January 1, and the appointment was for the following Tuesday.

Ultimately, my need to know won out. There was never a thought in my mind that we wouldn’t keep the baby, not for a second. But if our son had Down syndrome, I wanted to know now. So a wife from our unit came with me to hold my hand through the amnio. It surprisingly didn’t hurt much, and was over in less than a minute. The doctor told me I’d get the results back in a few days.

I felt surprisingly calm and worry-free over those few days. I think on some level I already knew what the result was going to be. That Friday, at about 6:00pm, a nurse from the doctor’s office called, asking if I could hold for him. I knew right then that it came back positive. He got on the phone and confirmed it: male, positive for Trisomy 21, or Down syndrome. He asked me if I had any questions. I said no, we made our next appointment, and I got off the phone as quickly as possible. And then, I started crying.

I called my mom and my best friend and told them the news. They didn’t really seem to know what to say. Matt was fortunately able to call that evening, and he actually took the news in stride. It was like it was no big deal to him. He was our son, and we would love him. Me? I struggled with the news. I cried for days on end. I couldn’t understand why this had happened to us, why we were being given a child with special needs. I wasn’t prepared in any way for this. I had never even met someone with Down syndrome, let alone know how to raise a kid who had Down syndrome.

After a few emotional weeks, I started to calm down. I learned that around 80% of babies with chromosomal abnormalities end up as miscarriages. This actually made me feel better: my son, just by surviving, was a little fighter. He was a tough guy. I think I had pictured him as being some kind of weak, helpless little child we’d have to take care of our entire lives. This made me start to feel differently. I started to research Down syndrome and learn about it. I found out how medical advances have done so much to improve the lives of people with Down syndrome.

And after some time, I was able to accept the diagnosis. When Wyatt was born, I was nothing but happy and excited to meet him. I felt no sadness, resentment, anger, or fear. It took me some time to get there, but eventually I knew that we could handle any challenges thrown our way, and that it would all be worth it in the long run.

Besides, normal is just a setting on a washing machine, right?

Wyatt was born with three minor heart defects, all of which have cleared up on their own. He hasn’t needed surgery, and has thrived these first six months. We’ve started early intervention with him, and he does well with his physical therapy, improving every week. He smiles a lot, likes to copy his big brother (which surely will be fun when they get older!), and is extremely vocal. He’s cute and fun and is just like any other baby. A year ago, I wouldn’t have expected that.

Having Wyatt has changed our entire worldview for the better. We both feel that we’ve become better people, already, because of him, Matt especially. We’ve met people we never would have met and are learning things we otherwise never would have known. And while it seemed so horrible at the beginning, I know now that I’d never take that extra chromosome away for anything. My son has Down syndrome, and really, it’s not that bad. In fact, I’d even say it’s good.

 

Madelyn’s Story of Success

This 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.

Madelyn WiserWhen 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!