Evan: My Life With Down Syndrome

Hi! My name is Evan. When I was born, my mommy named me Evan Blake Scott. I was born on January 11, 2005, in a town called Shawnee in the state of Oklahoma. My mommy’s name at the time of my birth was Brandy Diane Scott and my biological father’s name was Kris Douglas. When I was born, the doctors had to take me by cesarean section, which is where they cut a hole in my mommy’s tummy so they could take me out. I was a very, very sick little boy and the doctors didn’t think I was going to make it so they called the whole family together at the hospital. I was born on a Tuesday, my Aunt Neena and Aunt Lala were supposed to start their first Spanish II class that night but had to come to the hospital to see me, and even though I couldn’t see them, I knew they were there.

         I was an average size baby when I was born—I weighed six pounds and two ounces and was 19 inches long—a healthy weight and length for a kid born with the problems I had. As I said before, I was a very, very sick little boy when I was born. You see, I was born with Down Syndrome, which made my heart sick. I was also born with an AV Canal in my heart, which made the un-oxygenated blood in my body go back and forth to each side of my heart. And to top it all off, there was also a hole in the middle of my heart and I only had two chambers when everyone else has four. According to what my mommy tells me, I had to stay at OU Medical Center in Oklahoma City for two and a half months after I was born. However, even though I was sick and had to stay in the hospital for two and a half months, my nana brought my mommy to see me except on Wednesday’s and Sunday’s and on those days, my Aunt Neena and Aunt Lala would bring mommy to see me.

         Even though I was still quite young, I had already developed a sense of obstinance and rottenness. I wouldn’t take my bottles so the doctors had to do a surgery to put a feeding tube in my little tummy and while they were at it, they took my tummy and wrapped it around the end of my esophagus so that I couldn’t throw up. Now, I don’t know what an esophagus is (ha, ha, ha), but I’m sure it’s a very vital part of human life. Anyway, now I had a feeding tube in my tummy instead of my nose (I found the one in my nose to be very irritating and I pulled it out once (ha, ha, ha)—just part of my obstinance I guess). My mommy finally got to take me home in March 2005 when I was two and a half months old. My mommy was still living with my nana, so that’s the place I called home for a while. Even though I was home, there was still a problem, mommy had to find someone to watch me while she went to work—this job fell on nana’s shoulders, but someone had to watch me while nana ran her bus routes so in stepped Aunt Stephanie, Aunt Neena, and Aunt Lala. I loved my Aunt Stephie, Aunt Lala, and, although I wasn’t too sure about her, I loved my Aunt Neena just the same.

         Coming home for the first time in March was a new experience for me because I had never been outside the hospital in my so far short life. For once, I was able to see what the outside world looked like instead of looking at the four walls of the ICU (Intensive Care Unit) at the hospital and to my surprise, it was actually quieter out here than it had been in the hospital. When I was in the ICU, there were machines constantly beeping somewhere—including my own on occasion, (I found this to be very irritating because it would interrupt my sleep). But, not only did the beeping of the machines keep waking me up, the nurses and doctors kept waking me up as well and so did my mommy. They were taking either my temperature or vital signs, changing me, or trying to make me take my bottle. Although I was very young and not very big at all, I already had an ornery side to me and my nana, mommy, and Aunt Neena attributed this orneriness to the Dodgen bloodline (my Poppy’s name was Bill Dodgen). Even though I was home, I still had to be hooked up to the dumb monitor when I was asleep because the doctors said I had what is called sleep apnea (not sure what that is either, but I think it had something to do with how I breathed when I was asleep).

         Things went well for a while, I was tolerating my feedings well and the only two things I didn’t like was being fed and my baths—I hated my baths and would scream and cry when it came to bath time and nobody knew why. As I said, things went well for a while but then in July 2005, I scared my mommy real bad when I got sick again. My mommy had to take me to the emergency room and they put me in the hospital for a week because I had pneumonia. They couldn’t tell that I was sick because I never acted sick. And even though I didn’t smile with my mouth a whole lot, everyone could tell I was smiling by looking at my eyes—they were always bright, dancing, and smiling—even when I was sick or wasn’t feeling all that well. In fact, in one of the first pictures my Aunt Lala took of me while I was in the hospital (2/09/05), my mommy was holding me up close to her face, and the way the picture came out, it looked like I was smiling.

         A week after I was put back in the hospital, mommy got to take me back home. This was a short-lived trip back home because a week later I started getting sick again and once again my mommy had to take me back to the emergency room again. Guess what? Yep, you guessed it, they put me back in the hospital again for another week—I had pneumonia AGAIN!! I finally got to go back home and spent three weeks in the comforts of home before they performed the scariest surgery of all on me—open heart surgery. This surgery was done on August 31, 2005, and they fixed my heart. So now, thanks to Dr. Pastuszko and Dr. Knott-Craig, my heart was all better. This time I was at OU Children’s Hospital for three weeks—for the first week, I was in the PICU (Pre-natal Intensive Care Unit), and then they moved me to my home away from home, the Infant Unit. During this three weeks I concentrated on getting better because I had nothing else to do with my time except lay in my crib and watch football on TV (ha, ha, ha, I loved to watch TV). By this time mommy had moved to Oklahoma City and had met Dallas Martin—the man that I would come to know as my daddy. I got to come home on September the 10th. Ten days later on September 20, 2005, my mommy, and daddy went to Miami, Oklahoma and got married.

         On Friday, October 1st, I went to spend the night with my Nana and I started getting sick. I was running fever, I wasn’t handling my feedings well, and I couldn’t breathe. Nana called my mommy and she came and got me. Mommy said that I seemed to be getting better all day Saturday and then on Sunday, I was really, really cranky. I didn’t sleep at all on Sunday night and that’s weird because I love to sleep. Mommy took

me to the emergency room Monday morning and guess what? Right again, they made me stay for a week. None of the doctors were sure what was wrong with me; all they knew was that I had to be on oxygen when I wasn’t on it at home. That scared everyone. Dr. Ward (one of my cardiologists) did a sedated echocardiogram (they looked at my heart) and told my mommy that I had elevated pressure on the right side of my heart. By this time I had become accustomed to the doctors doing all kinds of tests on me, trying to figure out what was wrong with me and why I couldn’t breathe without oxygen (I hated that oxygen tube being in my nose and I pulled it out every chance I got—so much to the point that they had to tape it to my face, ha, ha).

         The doctor told my mommy that with medication, the pressure should come down but if it didn’t within three to six months then something was seriously wrong. I finally got to go back home on Friday the 7th on ½ liter of oxygen. I was on some new medication called Sildenafil (liquid Viagra) along with my Lasix that I had to take every day. It seemed like every time I went to the doctor there was some new medication or treatment they wanted to try me on, anyway. Sunday, the 9th, my mommy knew that something wasn’t right with me so back to the emergency room we went where they took me up to 1 ½ liters of oxygen, yet no one knew why (by this time I had spent half my life at home and the other half either in an emergency room or a hospital room). As I said before, I was well used to the doctors doing all kinds of tests on me and I had gotten fairly used to needles as well because it seemed like every time I went to the emergency room or went into the hospital they stuck me with a needle for some reason and this time was no different. This time they tested me for RSV, which came back negative, they also did a Pertussis test, and that’s where I stand today, October 10, 2005.

         Although I was only nine months old, I had already been through several tests, doctors visits, emergency room visits, hospital stays, two bouts with pneumonia, a surgery to give me a feeding tube in my little tummy, and the biggest surgery of all, open heart surgery—but I was a fighter. My mommy says that I am special and strong….stronger than her or daddy! Daddy tells me that God has something special planned for me, and guess what? I believe him. But, so far, that’s me, Evan Blake Scott, and all that I’ve been through so far but I’m sure there’s more to come….

         See, I told you there was more to come and here we go. In November, mommy took me to the doctor and they were concerned because mommy had to push my oxygen up from ½ liter to 2 liters so Dr. Augelli put me in the hospital (imagine that…). They did a sleep study on me to see if I had sleep apnea but I didn’t. Then they did a thyroid test to see if it was working right; it was. Then they decided to do a cat scan of my lungs to see if maybe there was something wrong with them; there was. They called it pulmonary hypertension (I called it plain old hard to breathe), anyway, they put me on albuterol and flovent and cpt (chest physical therapy) all twice a day. On Thanksgiving, mommy, daddy, and I went to Nana’s to spend the day with the rest of the family. I remember the day very clearly. There was a lot of people there and I was very, very cranky—crankier than normal—I absolutely did not want anyone messing with me, so mommy put me in my swing in Nana’s room and I was happy with that (they didn’t know that all I wanted was to be alone so I could talk to Poppy and Mimi). After a while, mommy came in and put me in my car seat and brought me out of Nana’s room and set me on the table and Nana started flicking my tongue (I loved this and kept sticking my tongue out further and further). Later on, they laid me on the couch, I had one knee up with the other leg across my knee, and I was perfectly content to lie there like that.

         I was great and doing really well…for about a month, then I started getting sick again. Mommy decided to take me to the emergency room because once again, she had to up my oxygen and it scared her real bad. The ER doctor said that they couldn’t see anything that was wrong so they sent me home on 1 liter of oxygen. The next day, mommy and daddy took me to the doctor for a post ER visit, something I was used to. The nurses couldn’t get a good number on the pulse-ox monitor and they all got very scared…mommy and daddy included.

         They admitted me (imagine that…) and up to the Infant Unit I went. By the time they got me up there, they had to give me 11 liters of oxygen by a mask that they tried to put over my nose and mouth. I hated that and kept turning my head to get away from it. Dr. Augelli decided that I was too sick to stay in the Infant Unit and moved me to the PICU where I could be watched very carefully. Once I got up there, they put a nasal canula back on me and turned me down to 2 liters of oxygen. I didn’t get to eat for three days because they were worried about my breathing, but they gave me fluids through the IV they put in my foot. Dr. Overholt (the main dude from cardiology) decided that they needed to do a heart catheter. They put me to sleep, put a tube down my throat and took pictures of my heart. The news was not good for mommy or daddy. Dr. Overholt told them that the meds that I had been on were not working and that there wasn’t really anything else they could do for me, just pray that I would be okay. They took me back upstairs and there I stayed for two more days. Then they said that I seemed to be doing a lot better and let me go to the Surgical Unit for one day and then by some miracle, I got to go home. YEAH!!!!!!!!!!  Mommy and daddy were sooooooo happy and thought that everything would be okay. The doctors told them that they’ve seen kids like me live long lives and they got very excited. However, on December 13, that all changed.

         Mommy woke up and I was fussy. She picked me up, loved on me, and put me in my swing and I calmed down a little. She jumped in the shower really fast and by the time she got done, I was very, very sick. She dressed herself very fast and then changed my dirty diaper. Mommy could tell that I wasn’t breathing well so she turned up my oxygen, and then hooked my oxygen monitor up to my toe. I was only breathing at 3% instead of the 92% I was supposed to. Mommy turned my oxygen up all the way and called 911. The fire department came and then the paramedics. I lie on my bedroom floor like a big boy and let them do what they needed to without fussing. I just looked up at the ceiling and talked to Poppy. He told me that it was okay to be scared but that Jesus needed me more than mommy and daddy. The paramedics put a tube down my throat while I was in the ambulance and then they rushed me to Baptist Hospital. The doctors did everything they could to start my heart again but they just couldn’t get it going. I went to live with Jesus on that day at the age of 11 months and 2 days. Mommy, daddy, Nana, Papa, well everybody was really, really sad. But, I want you all to know that I love
you very, very, very much and that I am breathing on my own now without that stupid nasal canula in my nose. I can run, talk, walk, play, chase the girls (he, he, he, he), eat with my mouth, and do all kinds of stuff that I never could on Earth. It’s so much fun up here and I have so many new friends that I can play with. I wish you all could be here with me but I know that you can’t yet. Poppy and Mimi are taking real good care of me and they argue over who gets to hold me most…just like mommy and daddy used to.

         Mommy, I don’t blame you for anything that happened to me, it was not your fault. You couldn’t have been a better mommy and I love you with all of my heart. You did everything right for me, but I was just really tired and I needed to come here to rest and be healthy. It’s okay to be sad and to cry, but just know that you will get to see me again someday and when you do, I will run as fast as I can to get to you and give you the biggest hug you’ve ever gotten. You wanna know a secret? I miss you and daddy too. Daddy, I want you to know that I love you and I never, ever hated you. You were the best daddy that I could have ever wanted. I know that you will be a good daddy to my little sister because if you aren’t, I’ll spank your rear….hahahaha.

         And Neena, this is a special note to you. I could always sense your frustration with me when you couldn’t get me to calm down. I want you to know that I loved you all the same and I knew that you were already a published author and that’s why I specifically asked you to write my life story (I knew you could do it and add pictures and other poems and stuff and make it sound funny, and I thank you).

         Papa, I have a special note for you too. You were the best!! First of all, I want you to know that I love very, very, very much and will never forget you or your laugh when I would do something funny and the smile you always had for me. All you would have to say to me was “Hey, it’s me,” or “Yeah, it’s Papa”, and I would smile from ear to ear. Sometimes you would watch me for 20 or 30 minutes, even though all I would do was cry, you’d just bounce me in my bouncy seat and keep your cool and say “It’s okay; don’t cry; mommy will be back soon.” You always kept Nana’s van running so that mommy and Nana could get me to my doctor’s appointments when I needed to go and for her to go to the emergency room when I was there. I know you planned to take me fishing when I got old enough because I heard you say so. I also know that you wanted to take me out in your boat when I got old enough to go and guess what?? I’m gonna hold you to that promise, get prepared to get your rear kicked. But hey, guess what Papa??? I can go fishin’ on my own now because I have a good Shimano rod and an open faced reel to go with it and I also have a boat of my own that I want to take you out in when you get here (ha, ha, ha, we’ll have so much fun fishin’ just you and me). Oh yeah, I have a fresh pad of paper and a brand new pen waiting for you. Papa, thank-you for being the best Papa a kid could ask for and raising my mommy to be the best mommy in the world. I love you and miss you Papa!!

Okay, well, I have to go now. The girls need to be chased and I gotta eat lunch (mmm cheeseburgers and french fries, my favorite). I love you all very much and I miss you too. Oh, I almost forgot…when everyone did Christmas at Grammy’s, everyone wrote notes and tied them to balloons and sent them to me to let me know they loved me, missed me, and were thinking about me, well guess what? I got every last note that was sent and I love ya’ll, miss ya’ll, and I think about ya’ll everyday and just remember I’m
watching over every single one of you. Anyway, time to go. Until we meet again….


Evan Blake Scott
1/11/05-12/13/05

         Yes, Evan was a little guy that touched so many lives in so many different ways. He had a special touch and when you held his hand, you knew that you were touching a child of God’s hand and you could feel miracles working through this little child’s hand when he touched you and it is an unforgettable feeling. This little man brought together a family that had, in a way, drifted apart for a while. Evan’s oldest aunt, Nicki, has a mental illness called bipolar disorder, which was diagnosed when she was 15. And she had, for whatever reason drifted away from the family at that time and was working really hard when he was born to find her way back into this family that she needed so desperately only to find out later that they had never left her in the first place, she was the one who had left them. Evan brought her back completely. Nicki was the type of person that never, ever let any type of emotion whatsoever show unless she was alone. It took this special little guy to come into her life to help her discover that she actually did have feelings and how to show them but it also took this little guy coming into her life to teach her how to deal with an illness that she would have for the rest of her life.

Nicki always had a lot of pent up anger and didn’t know where it all came from or how to deal with it, but when it came to this little guy in her life, well, she simply completely forgot about all her anger and realized that people and things can change. See, she had a rocky relationship with her mom and dad when she was a teenager and no one could figure out why. She ran away from home and went to Hawaii but that story won’t be told here. This is where she found out what was wrong with her. This little boy so touched her life that living with bipolar disorder no longer became an obstacle to her but something to overcome because if this sick little boy could overcome all his illnesses then she could overcome her battle with her mental illness.

Now Papa was also a very special man to this little sick guy. Every time Evan saw his Papa, he would get a grin on his face from ear to ear. Evan was also very special to his Papa. When Papa would come home from work he would always announce to Evan that he was home and Evan would just grin and grin and grin and laugh. On occasion, Papa would even baby-sit Evan and those were the most special times for Evan and his Papa.

Uncle Billy also had a special bond with this little tyke. When this little guy would see his Uncle Billy, his little face would light up and you could see the smile tugging at the corners of his mouth. To this day, I swear up and down that Uncle Billy taught little Evan the Pistol Pete symbol, of course this could have been done by mommy, daddy, or a combination of all three. Uncle Billy has two children, Michael, age 8, and Marissia, age 4. Both of these children were extremely close to their cousin Evan. Michael’s only wish for his 8th birthday was to have his cousin home from the hospital and he got his wish. As for Marissia, well we’re not real sure how she felt about Evan but I think I know. When Evan died, she spent at least an hour crying over it so I know she was close to him. Michael spent nearly two weeks at Nana’s house after Evan died to help Nana out and it did them both some good. Michael didn’t want Evan to die, but then again, none of us did.

         Aunt Stephanie also had a close bond with this sick little boy. After all, she was one of the one’s that helped take care of him when Nana would run her bus routes. Aunt Stephanie has four children. Samantha, age 7; Brandon, age 5; Christopher, age 4; and Rebecca, age 2. Rebecca was too young to understand that Evan was gone. You see, when Evan died, all the kids were at school. When they got home, Chris found out first and he said that he was glad Evan wasn’t hurting anymore—unique perspective from a kid that age. Sammy just hugged her momma and cried and cried and said she didn’t want him to die, and Brandon stood in the front yard with his mouth hanging open and the only thing he could say was “what?” None of the kids were allowed to go to the funeral home or the funeral because they had just seen Evan the day before, he was fine and all the parents, and I wanted the kids to remember Evan the way they had last seen him, alive and playing.

         The family had more friends than I knew of, that’s for sure. The last time I saw Evan in the hospital, he grabbed my little finger on my right hand and then did his little Pistol Pete symbol. But I could tell by looking at his eyes that he didn’t have much longer with us, I was just hoping to have him through the holidays and that he might make it to his first birthday. My only Christmas wish last year was to have my nephew home with us, that’s all I wanted, but that didn’t happen. We Evan’s Aunt Lala) and (me were closing on a couple of houses the day he died (12/13/05), as a matter of fact, we were at the title company when I got the phone call. I was fine outside but the minute I went inside, I hit the floor. From the way I understand it, my mom passed out and my other sister (Stephanie) went into hysterics and had to wait ten minutes to call me. If I also understand correctly, Evan was only alive for about fifteen minutes after they got him to the hospital.

         Evan was a special little boy that’s true, and he accomplished many things while he was still so young. Aside from bring a family together; he was also a chemist even though he didn’t realize it. Aunt Stephanie had a chemistry test the last day Evan was put in the hospital and he was the only thing on her mind—she has no idea what answers she put down but she managed to ace that test. And Uncle Billy, well even though he had his own set of problems to take care of, he was always there at Nana’s it seemed to visit Evan and Evan always had a smile on his face and a Pistol Pete wave for his Uncle Billy.

         There were also two other people that would baby-sit Evan if no one else was available and those two were named Kim and Meshell. Kim was Uncle Billy’s ex-girlfriend and Meshell was Uncle Billy’s ex-wife, but both of these women were part of the extended family. Evan was also very special to them as well.


Evan was Brandy’s baby by birth but he was everyone’s son—well, everyone that took care of him anyway. And when one of us would hold Evan, we knew we were holding a very special little human being and a definite miracle. Evan went through so much in his short life that most people probably would not have survived or even known how to fight back. But Evan, now there was a fighter and everyone’s little miracle boy. He was close and special to everybody who came into contact with him. And through his many doctor’s visits, emergency room visits, and hospital stays, Evan still managed to keep his head up and fight to get better. But, toward the end of his life, Nana, Lala, and Neena told him that if he ever got tired of fighting then it was okay to quit fighting and we would understand. He was always fighting for something, whether it be fighting to breathe, or fighting against whoever was feeding him, or fighting the person that was giving him his bath, he was always fighting and this is one of the things that we will never forget about out beloved little angel and our little hero.

Everything that came easy for “normal” or “average” children came hard for Evan but he never gave up trying. I think this taught us a very valuable lesson about giving up. I think Evan, in his own little way, was trying to tell us that giving up was never an option at any point in time in our lives. I know he certainly taught me a valuable lesson, one I won’t soon forget, he taught me how to live with an illness and maintain a life instead of having the illness and giving into it or giving up on it and I thanked him for that. Evan was one of God’s little shepherd boys and when he took him to live in Heaven, he made him a king of many things. When you would touch Evan’s little hand, or look into those big brown eyes of his, you knew that you were looking at a miracle child. Evan still talks to me this day and it’s been almost a year since he physically left this Earth. Evan didn’t know it at the time but he was soon to have a little brother.

On June 16, 2006, Evan’s little brother, Gavin Ty Martin was born. Gavin weighed 7 pounds and 6 ounces and was 19 ½ inches long at birth. As of today, November 23, 2006, the little guy weighs just over 15 pounds and rolled over for the first time today. It’s Thanksgiving and I have a lot of things to be thankful for but the one thing that I have the most to be thankful for is a little boy that taught me how to feel again and how to care about the smallest things in life. Gavin will always know about his big brother, the struggle he had, and all the battles he faced. And, through this book he will never forget his big brother and he will understand how his big brother touched so many people’s lives.