Hi, my name is Devon! I was born May 16, 1998 and passed away in my mother's arms on June 22, 1999.
I would rather have had 30 seconds of wonderful, than a lifetime of nothing special...

Devon's first birthday was May 16th. He had just had his g-tube for a week, and was tired but seemed okay. He was a little uncertain about all the hoop-la for his birthday, but he stuck it out fairly well. A month later we were traveling to Missouri to visit my parents, when I was feeding Devon through his g-tube, and suddenly he started vomiting out his mouth and nose, very violently. We were at a gas station, so I pulled him out and over and hit him in the back and tried to clean up his nose and mouth right away so he wouldn't inhale any of it. This was the second time this had happened, and I was terrified he was going to get aspiration pneumonia. He seemed okay, and we went on for the weekend. That whole weekend he was a bit "off", not quite as happy or smiley. We figured the trip had been too much for him. On the way home, Steve noticed that Devon seemed a bit lethargic and uncomfortable, but didn't think much of it. I didn't even notice. We put him to bed that Sunday night, but I left him off of the Bi-Pap because I didn't want to give him any harder of a time after the weekend. I did hook him up to the oximeter though. Around 6:30 that morning, his oximeter kept going off, with the levels below 94%. I figured the probe was loose again, because he was sound asleep and looked completely fine. After my third trip across the house just to have the levels go back up when I messed with the probe, I just shut the machine off and went back to sleep. Yet another one of my regrets.

Devon normally woke up, quite cheerfully, around 8 a.m. Sometimes he'd sleep in until 9 am, but that was more rare. So when 10 a.m. rolled around and Devon still wasn't in there quietly and happily chatting to himself, I went in to wake him up. When I got in there I said "Hey, buddy, what are you doing lazing the morning away in bed like that?" As I got closer, I noticed he was breathing very rapidly and shallow. I got right up to him, and his skin was a funny grayish color. I grabbed him and said "Devon! Wake up baby!" and rolled him over onto his back. He opened his eyes, and when he did that's when I knew we were really in trouble. His eyes were glazed, unfocused, bleary, and he wouldn't stop breathing funny even awake. I grabbed him, yelled for Steve to get his Bi-Pap and oximeter, and put him on our living room floor. We hooked him up to the oximeter first, and his levels were reading in the 70's. My heart was racing a mile a minute, and as we got the Bi-Pap on, it wasn't helping! His levels stayed low, and his color was getting worse. When his sats dropped to the low 70's, we unhooked everything, threw ourselves into the car, and speeded to the emergency room. I just held him in my lap-a car accident was the least of our worries at that moment!-and begged him to keep breathing, to hang in there. When we arrived, they knew who we were as we had prepared them for what we wanted if this ever happened-they had a copy of Dr. Bach's protocol on file.

They took us immediately back to the ER. His levels would not come up, so they told us per Dr. Bach's protocol, they would intubate rather than just provide oxygen. We agreed. And this is the one that hurts me the most, to this day. Had we simply provided oxygen, he may have been okay. But that one decision set off a chain reaction of events that eventually led to his death.

As we were waiting to intubate, suddenly Devon vomited blood. It was dark red blood, like it was old. And there was blood in his g-tube too, also dark red. The doctors had no idea what is was or why it was there, and to this day we have no idea what that was from. But it scared the beejeebers out of us all. The doctor tried for half an hour to intubate him, and couldn't do it. He kept pushing these metal things down Devon's throat, and his gums were bleeding from being scraped and he was crying and it was more than I could handle. I started crying and I said "Oh, Devon, I'm so sorry baby". Steve grabbed my arm and he said "Laura, Devon needs you right now, you stop crying." And I did. Finally they called another doctor in, who got the tube in right away, the first try. I could have killed that first doctor with my bare hands.

They did x-rays on Devon, but we all assumed it was pneumonia since it is so common in SMA children. Our local hospital also called Riley Hospital for Children as it is our area expert children's hospital, and they sent a team up from Indianapolis an hour and some away to get Devon and take them back to their hospital. As soon as they walked in the door, they took over. They took Devon in a moving hospital back down to Riley, but they would not let us go with him or even follow behind them. So we had to go home, pack and then head down there. Finally we get there and they let us in, and he is on a ventilator, on oxygen, and sleeping.

At this point nobody even knows what is wrong. They take about 8 rounds of x-rays, but none of the x-rays show a problem. So it's not pneumonia. They have him on antibiotics, but after 2 days and we know it's not pneumonia, I ask them why they are still pumping antibiotics into him if he doesn't have an infection anywhere. They stop the antibiotics. Every nursing shift that comes in has to be taught-by us-not to dump his food into his g-tube all at once-or he'll throw it up which would be deadly on that vent. If we weren't in the room when they came in the first time, they would try to dump the formula in. The doctors want to put Devon on Pediasure to help him gain weight. I lie and tell them he has a dairy intolerance because I do NOT want him on Pediasure after everything I had heard about heavy dairy and SMA children, and I knew they would argue and I wasn't in the mood. They said they didn't want him fed for 24 hours before trying to extubate him, but I didn't want him to go that long without food because of what we'd read/heard about SMA children and ketosis and burning their own muscles, etc. It was a daily fight to try to do what was best for him, and we NEVER wanted to leave him alone in there. Steve and I rent a hotel room and take shifts walking to the hospital and back. I take the day shift, he takes the night shift, so that Devon will never be alone in his room. The hotel is $90+ per night, so we try to get into the local Ronald McDonald house, and finally do. They were a lifesaver.

The doctors have been weaning Devon off of the vent, and after about 4 days he is on room air, no oxygen, and triggering each breath of the vent on his own. They sit down with us and tell us that if he doesn't come off the vent this time, the next time has an even worse chance that it will happen, because he will be even weaker. And they ask us what we want to do if that happens. The main doctor shows us pictures of a 16 year old boy with SMA 1, in his chair, and tells us how he can not even communicate. Then she takes us to the PICU ward and shows us children with a trach, what it looks like, how it works, etc. We tell her that we had decided we could provide a good life for Devon, on a vent or not, and that if he crashed we wanted him re-intubated and would try again, and if that failed, we would trach. She said okay. The next day was the big day. I went to McDonald's and got lunch. I came back in with the bag, and some doctor I hadn't seen before extubated Devon. He came off the vent coughing and crying, so weakly. I held him and tried to calm him down because I knew if he stayed hysterical he would only make himself weaker. I kept saying "He needs to go on Bi-Pap! He needs the Bi-Pap!" but they weren't listening to me and he was so scared and crying so hard I just worked on calming him. But then it happened-he started turning blue, his oxygen levels fell off, and he started crashing. I kept singing to him and talking to him and willed him with everything I had to start breathing deeper and stop crying, but even our "special" song "You Are My Sunshine" wouldn't calm him this time. They threw us out of the room, and the emergency team re-intubated him. I started bawling in the hallway, and Steve held me and let me cry. Some lady had the misfortune of walking by and asked if she could help and I'm afraid I was a bit rude as I just said "NO!" Finally they let us back in his room, and he was sleeping peacefully and back on oxygen.

I spoke to the doctor I knew, and she said that she would be doing the extubation this time, and that she would put him on Bi-Pap immediately. I have a feeling they are lucky we didn't sue for malpractice because Devon was strong enough that first time to survive off the vent and Bi-Pap for 20 minutes...had it been done right, he probably would have come home.

The next week they weaned him back down to room air and to where he was triggering the breaths on the vent again. The time we were there, it felt like we were in a whole other world. One of us always stayed with Devon, and we would watch TV or talk to him in there. I wish I had played with him more. He would wake up, look over, and make sure one of us was there, then he would close his eyes again and go back to sleep. When he was awake, he would wave, stare at his toys, and listen to us talk or read to him. He would smile around the tube in his throat and mouth, and he quickly became a favorite with the nursing staff because of his pleasant personality and bright eyes and cheerful temperament. They would debate who got to care for him that day, and one nurse, Paula, really fought to get him every shift.

The extubation was again scheduled for noon, and I didn't sleep a wink all night while Steve watched over Devon. That afternoon I took several pictures of Devon, because he was in such good spirits and waving and smiling around the tube and talking. I was so scared, because I knew in my heart this was it, that this was his last good chance. But he looked so strong and healthy, and was triggering every breath on his own, on room air, so we felt pretty optimistic. I had called Dr. Bach repeatedly, but nobody had returned my desperate calls. I later found out his wife was dying at that time, and that is why I didn't hear from him.

It is June 21, 1999, and my 13-month-old son is lying upstairs in the Pediatric Intensive Care Unit of Riley Hospital for Children in Indianapolis, Indiana. At the moment, all is quiet. It is late at night, the visitors are gone, the lights downstairs are off, and the hospital feels deserted. Steve is staying with Devon at the moment, so before I go to the hotel to rest for a few hours, I wander into the hospital chapel for the first time in the two weeks I’ve been there. It’s a dark room, and small, and the main focus of the room is a large book at the front of the room, on a pedestal, where people write their prayers for their desperately ill children. I read a few of them, kneeling by the book, and then decide to write my own. Tomorrow is the day. Tomorrow Devon will be taken off of the ventilator for the last time, and tomorrow will most likely be his last chance. Devon had been stronger than average until now, but he too was facing respiratory failure. I think of him, up in his room, hooked up to a ventilator, an IV, an oximeter, chest probes, feeding tube, and everything else he has been dealing with for these last few weeks. And I think of the smile he gave me right before he fell asleep. I write in the prayer book, asking God for mercy, to spare my son, to give us more time, to not let him be afraid or in pain. After spending some time in prayer, I go to the hotel to rest, knowing that when morning came, it would be the biggest day of our lives.

Meanwhile, that night, Steve also went the chapel to pray for Devon. He looked at the prayer book, wrote his own prayer, and knelt to pray for our son. When he got back up he noticed sitting right on the prayer book, a small, lightweight silver cross. The cross was not on the book when he wrote on it a moment earlier. The cross was stamped with “God Loves You" and a dove for "peace". He took it as the comforting sign that it was, and kept it for Devon.

Morning came far too quickly. When our doctor came in, I asked her "If he doesn't come off the vent this time, do you think he would be able to be successfully extubated next time?" She said they would try it as many times as we wanted until we knew for ourselves that it wouldn't work. I said "BUT DO YOU THINK HE CAN DO IT? What are his chances?" And she held her fingers very close together and said "The odds are very small that if this doesn't work, he will ever come off the vent."

Steve and I looked at each other, and suddenly we knew the answer. For us, for Devon. He had fought so hard, and hated the machines so much. Steve looked at me for help this time, because he couldn't say the words we both knew. So I took a deep breath, and with my next sentence I sealed our son's death. I told the doctors that if Devon crashes immediately, re-intubate him, because we can't just let him die like that on the table. But if he transfers to Bi-Pap, and can't make it then, we do not want to reintubate. Steve turned away and started crying, and I could hear the rush of air in the room as everybody realized what I'd said. You could have heard a pin drop. Finally the doctor said "okay", and they extubated to the Bi-Pap.

It was successful! He was off the vent, and on the Bi-Pap, and sleeping. I immediately called some people and told them the good news. I felt relief, that this crisis was going to be over, that we would be taking our son home soon, that we had more time with him after all. I was so happy, and tired, and relieved. He had always been so strong, and I knew of much weaker SMA I children who fought off a lot worse situations than this, and survived. I knew he was coming home!

Steve reached down and handed the cross that had appeared to him in the chapel to Devon, and Devon seemed to grab it with more strength than he had ever shown in his hands. It seemed to be formed for his hand-the perfect size so that his tiny hand could grasp it, and lightweight enough that he could hold it. Amazingly, he did not let go.

It was lunch, so Steve watched over Devon while I went to the cafeteria to get some food. I was 2 months pregnant at this time, but had never had any problems...until now. As I sat down to eat, I took my first bite of pizza, and was overwhelmed by nausea (which stayed with me for the rest of that pregnancy). 30 seconds later as I was struggling to eat something, the page came over the loudspeaker that every parent with a child in an intensive care unit dreads. "Will the mother of Devon Stants please come to the PICU immediately? Will the mother of Devon Stants Please come up to the PICU immediately." I left all my food there, barely grabbed my wallet, and raced to the elevator up to his room. When I got there, his heart rate was high, and he was distressed. Steve had thought I might be able to calm him down, but I couldn't. He wanted off of the Bi-Pap when he woke up, just like at home. It was obvious we had a serious problem. He fought against its breathing, and you could see him push his stomach against it. His heart rate started going up, and he was scared and upset. Some stupid nurse came in and whispered to another nurse how she thought the Bi-Pap was a cruel machine and how she never wanted to use it on a baby. If I could remember who she was, I would turn around and go tell her what a horrible thing that was to say in front of us.

We changed all the settings, many times, trying to find one he would work with. We sent someone home to get our Bi-Pap, thinking the familiarity of the machine might help. The doctor said we could try taking it off and see how he did without it. I thought it was worth a try because he obviously wanted it off. But the moment we took it off, his oxygen levels dropped to the 40's and he turned blue. She had to bag him and put the Bi-Pap on immediately to save him. It was terrible. All day long we fought. The doctor knew from the beginning that he wasn't going to make it, but it took us all day to figure it out. I sent out another desperate call to Dr. Bach. The day went by in a blur of beeping and whooshing noises of machines. The doctors offered to provide oxygen and morphine, but I refused because I wanted him to have every chance to live and I knew that once we administered the morphine, it would depress his respiratory system, and it would be over. I wanted to give him every fighting chance, I wanted him to live.

I had been begging to hold Devon from the day he was brought into the hospital 2 weeks ago, and they had always refused. Now the doctor told me I could hold Devon. I said I didn't want to because I didn't want to hurt him. She urged me to. That's when I knew secretly that she didn't think he was going to live. So Steve and I took turns holding him in our laps, just loving on him. Sometime that night I looked at Devon's eyes, trying to talk to him, and he wouldn't look at me. His eyes were glazed in pain and he wouldn't respond to me at all. I started saying "Devon, baby, look at Mommy! LOOK at me Devon! Please, sweetie, look at me!" But he wouldn't. I got the nurse in there and said "please give him something, he is hurting!" So they gave him the oxygen and pain killer, and he immediately started feeling better. I felt so horrible that in our attempts to give him a fighting chance, we caused him pain. As soon as we had given him the pain killer, I went out and made the calls to family, and told them if they wanted to see him they needed to come, now. Most were 7 hours away. My mom and her husband came, and sat in the room with us. Steve's mom & dad came in and talked to him too. Others tried but did not get there in time...We prayed for mercy, we prayed for healing, we prayed for God’s answers and for the faith to sustain us during this time.

It was late, about 11 p.m., and Devon's oxygen levels started dropping even though he was on oxygen and Bi-Pap. Steve gave him to me, and I held him, and as I had been doing all day, all his life, I memorized him. I memorized his scent, the feel of his silky and slightly sweaty hair, the shape of his ears and fingers, the peculiar color of his eyes, just everything about him. I knew that the next time I put him down would be the last, that this was the last time I was going to hold my son in my arms or see him alive. I held on to him like I could ward off death just by sheer willpower. I put him up on my shoulder, his favorite place to be, and I sang him his favorite song "You Are My Sunshine". The nurses took off all of his IV's and probes, and he just had the Bi-Pap on and an oximeter to read his oxygen levels and heart rate. His daddy kneeled next to him and looked him in the eye. Finally, his oxygen levels were very low, and Steve took off his Bi-Pap mask so that he wouldn't have to have that hated thing on when he died.

Inside me I felt a scream, I felt like shouting "PUT IT BACK ON! Somebody get in here and SAVE HIM!" But I didn't. I could feel him taking fewer and fewer breaths, and I could see the heart rate dropping lower and lower. I was so scared that he was hurting, I just kept begging God to take him now, don't let him hurt, just please take him. A few seconds would go by before he would breathe again, and I would just cringe, feeling the breath that I knew wasn't helping. I was just so terrified that he was suffocating to death in my arms and I couldn't save him and I just begged that he not be hurting. I could feel him getting heavier in my arms, and again I wanted for somebody to come in and save him. He would open his eyes, and make sure Steve was there, and then close his eyes again. I sang his favorite song to him, over and over, even though it was mostly humming by then because my throat had closed off. I whispered how much I loved him and how it was okay for him to go now. Then it was over; I knew the moment that it was, and I knew my son was gone and I was not holding him any longer. That's when I had to see his face, I had to know. So I brought him off of my shoulder, and looked into his face, and it wasn't scared or hurt-he only looked calm and peaceful.

The doctor came in, listened for a heart beat, and noted the time of death. She said we could stay in there as long as we needed. I continued to hold him, because I wanted to be able to hold onto him for the rest of my life. I knew once I laid him down, it would be forever, and I wasn't ready for that. I held him for another half hour or so, and when I went to put him down for the last time, I noticed his fist tightly clenched. I had never seen him hold an object tightly in his life, so I looked closer, and saw the cross Steve had miraculously found. It almost isn’t possible for an SMA baby (or any 13 month old!) to grab onto an object, and hold it tight for 10 hours or so and never let it go. But he did. Devon died with that cross tightly held in his fist. “God Loves You. Peace". Devon left this world in his mommy's arms looking into his father's eyes. He entered the next world in Jesus’ arms looking into his heavenly father's eyes. I thank God for the peace I have knowing that.

I called the nurse in and said we were ready for them to take him. She told me just to lay him down in the bed and they would watch over him until the funeral director arrived. And I knew they would watch over him, because as we had all realized he wasn't going to make it, every nurse and doctor in the room was crying along with us. So I laid him in bed, and he was just so beautiful and peaceful, and I would swear he had a healthy golden glow in his skin. He looked like my precious son was just taking a nap. Steve and I then took each other's hands, and did one of the hardest things in our lives-we left the hospital room, leaving our son behind.

When we got to our Jeep, Devon's car seat was in the back seat, strapped in. But no Devon. It was 1 in the morning, and as we drove home, we were past the point of exhaustion and numbness. The next day family came, and Steve prepared Devon's body for the funeral. I didn't want to do that because I wanted my last memory of holding Devon to be the one I had. Steve wanted to because it provided peace and closure for him-something he could do for his son. We had an open casket service so that his family and friends could say goodbye, but the boy who was in that casket did not look like the boy I had laid in the hospital bed. He had lost that beautiful glow, and they had makeup on his face. It was just another piece of proof to me that he was not here, he had been in Heaven, whole and perfect, for days now. The service was perfect. I can remember everything that happened, but only about a third of the people who were there. I got up and read "I Promise", the song/poem by Cheri Potter, as those were the words that were running through my head as I held him in that rocking chair on my shoulder as he died. His cousins (ages 7 and 5 I think) sang "Jesus Loves the Little Children", and his uncle Lon gave the message. Afterwards everyone was handed a white balloon, and as we went to the graveside, after a prayer, we released our balloons into the heavens. It was our way of saluting Devon, and of releasing him too.

Afterwards we came back to our house, about 50 people were here. I got out my 5 photo albums full of pictures of him so people could look through them, and we watched video tape of his life. Laughing, playing, smiling, having a wonderful time. It was a celebration of his life. Now all those photos I took were appreciated. I just wish I had more, because soon photographs become your memories, and you can never have too many memories.

Then everybody went home. That's when the real heartache begins. There is no more cushion, there is no more acting sane for other people. It is just you, alone, with nothing left but memories, clothes, and toys. We put pictures up of Devon all over the house. I always wanted to see his face, to make sure that I kept him memorized, that I didn't forget a thing.

So how does this end? Well, it doesn't. It's a daily journey, and will be for the rest of our lives. We will always be missing a son, a member of our family, no matter how many decades pass. People will ask "how did you do it"? Well, you don't have a choice, that's how. That's not true, you do have a choice. You can choose to continue to live life, enjoy life; or you can choose to bury yourself with your child. We made a conscious choice that we would honor Devon's life and his memory with only happiness, not despair. We wanted to remember the 13 months of his life, not just the one day of his death. We wanted his memory to be a joy to us, not a tragedy, because we didn't think that would be fair to him. His life was full of joy and love. No matter how the above story sounds, he had many more good days than bad, and even the "bad" days weren't bad for him, mostly for us! I am thankful for that, too. He really did have a wonderful life, and he was a happy boy-almost 90% of his photos he is grinning at me! His whole life he was only surrounded by people who loved him, and he knew it! So for him, and for us all, we made the choice to continue to live, to help others if we could, to be joyful, and to never take life for granted. We know he is looking down on us from heaven, with his gray eyes smiling, happy and whole and healed. And we know that some day we will see him again.

As the days passed, Steve and I realized that God had indeed answered our prayers, even if they weren’t answered in the way we wanted. We prayed for Devon to be healed. Now he's standing like a child should, and in awe at the beauty of his surroundings. He has been completely healed and has earned the crown without the struggle. We prayed that Devon would not suffer. For most of the 13 months of his life, he was healthy and happy, which is more than many SMA children get. We prayed that when it was his time, Devon would go peacefully, with little pain. At the very end when he was on my shoulder, looking at his father, holding onto that cross, surrounded by his family and us all telling him what he has meant to us, I can honestly say his face was extremely peaceful. He did not look sick or sad or hurt any more. He looked like he was totally contented, and when he fell asleep for the last time he went from his favorite place on earth surrounded by his most loved ones to his own place in heaven surrounded by the only One who could love him more than we.

Our prayers have been answered, our son had a remarkable life, our own lives are irrevocably changed for the better, and our faith by trial has been bolstered by the knowledge that God sent a sign of peace and promise to us and our son-in the form of a perfect cross that a weakened child grasped on to for the last 10 hours of his life. “God Loves You. Peace.”

One more thing I need to mention. This story is just how I felt, how I remember. But the two most important factors in all of this, even though I don't mention them nearly enough in here, the two things that kept me waking up in the morning, smiling for my son, enjoying the days even when they were hard, surviving the death of my child, these two things were faith in God, and the love and support of Steve. If I didn't believe in a God who loved me and my son, who grieved for our pain as well; if I didn't have faith that there was a heaven that Devon was headed to where he could be whole and healed and free; if I didn't have that, I could not have survived this. And secondly, Steve was a full and complete partner. He helped me make all the tough decisions, didn't judge me for any failures, helped me be strong when I had to be and let me be weak when I needed to be. He cared for his son as gently and lovingly as anyone can picture, and was about the best father and husband I have ever seen. The hard times I mention just using "I", were not just "I". They were "We". And I could not have and would not want to have tried to do this without him.

For now, I guess this is where this ends. We can see pieces of Devon in his little sister, Kaylee, and we enjoy the living reminders. And he will live on in our minds, our hearts, our family, and our daughter's eyes.

Source: Laura, www.our-sma-angels.com