Giving the gift of books...

Connor’s story began in February 1999. I was diagnosed with endometriosis and my doctor told me if we wanted to have children , we should start trying right away. He gave me six months to get pregnant on my own before I would need surgery to remove the endometriosis. After various ovulation predictor kits, fertility charts, eating certain foods, etc. I still was not pregnant, so in July I had the surgery. We had to wait another month for me to heal before we could try again.

On October 15th, four days before our wedding anniversary, I decided to do a pregnancy test. We were leaving that day to go out of town to celebrate our 3rd wedding anniversary. When I saw two little lines, I couldn’t believe my eyes. It was about 5:30 in the morning when I woke my husband Matt up to tell him I had an early anniversary present. Later that morning I called my doctor because I was having some cramping. I was so scared about having a miscarriage. He told me to come into the office. The doctor confirmed I was pregnant and due in June. We left that afternoon to go out of town. I bought all of the pregnancy books and was elated. I felt like shouting it from the rooftops. I had waited my whole life for this – to become a mother. Being a mom and having a close happy family had always been my dream. After years of babysitting and holding other people’s children and loving them, it was my turn now, my chance to have my own baby. I couldn’t wait for June to come. We also couldn’t wait to share our good news. We scanned a card with a cartoon of a man and a pregnant woman and sent it out to our friends and family. Everyone was thrilled for us.

The next few months were filled with doctor’s appointments and feeling nauseous. The first time we heard our baby’s heartbeat, I was overwhelmed with happiness. It was becoming more of a reality. We were going to have a baby. We brought along a tape recorder and later shared it with our friends and family. When I felt the baby move for the first time, I couldn’t wait to call everyone. We were so thrilled to be expecting a baby that we shared every moment with our close friends and family.

At about 18 weeks, we had our first sonogram. I felt so lucky to still be pregnant – having a miscarriage was a big fear of mine since my mom had had three before having me. At the sonogram, we couldn’t wait to find out if we were going to have a boy or a girl. But that wasn’t to be – our little one held his hands in front of his little parts. We were disappointed but felt for whatever reason we weren’t supposed to know the sex. We did have names picked out – Connor Ellis for a boy, Emma Beverly for a girl. The important thing was that the baby looked healthy so now we just had to wait until June. At each of the doctor’s appointments, I listened to my baby’s heartbeat and remember them commenting on how strong it was.

On April 1st we moved into a small duplex. We hadn’t bought much for the baby yet but felt like we had plenty of time to get ready after I got out of school in May. The baby was due June 20 th. In May I had both of my baby showers. My mom and I had painted my old bookshelf and I looked forward to putting the nursery together. We were decorating it in Classic Pooh.

At about 34 weeks, I had my regular checkup. I was measuring large – the doctor said this was going to be a big baby. He felt around on my stomach and felt as though the baby might be breech. He scheduled a sonogram for the following week. All I could think of was, maybe now we could find out the sex of our little baby schmoo!

On May 12th, we left for Houston to take our couch to be recovered by my uncle. That day was field day at the elementary school where I taught. I was working a game and a boy named Connor came to play at my station. I just looked at him and smiled as I wondered what it would be like if I were to have a little boy named Connor. On the way to Houston we stopped at a gas station in Huntsville. I went to the bathroom and when I stood up, my water broke. I couldn’t believe it – I didn’t know what was happening at first. And I didn’t know what to do. I sat in there for a while and finally made a run to the car. I was crying when I got to the car. I couldn’t believe this was happening. We had a choice to make - go on to Houston or head back to Dallas. I wanted to go home. I wanted to be with my doctor, at my hospital. We called my doctor and he said this is why we tell you not to travel in the last trimester! I was 34.5 weeks along and thought I had plenty of time. We headed back and called 911. An ambulance met us on the side of the road. They were much more nervous than I was. I was thinking, this is my first pregnancy and I have hours of labor ahead of me. I was excited about finally meeting my baby. They took us to a small hospital in Crockett. They did an x-ray to see if the baby was in breech position (for some reason they couldn’t do a sonogram). They inserted an IV and gave me some medicine to stop the contractions. It felt like it was burning my veins. They wanted to care flight me back to Dallas but there was a severe rainstorm in the area so they couldn’t. They had to take me back in an ambulance. We arrived late that night. All of our family met us there – I scanned everyone’s faces – they looked so grim. I still wasn’t scared. I thought everything would be fine. When my doctor came in, he said that the baby would probably spend some time in the NICU since it was so early. He scheduled me for a sonogram in the morning to check the baby’s lung development. Again, I thought maybe now we would find out the sex. I sent my mom home to get things ready for the baby.

The next day, on May 13th, we had our sonogram. That is when our lives changed forever. It was also the first time we heard of CDH – Congenital Diaphragmatic Hernia. The sonogram technician said what she was seeing wasn’t good and of all of the birth defects this is not the one you would want your baby to have. She paged our doctor immediately. As we waited, I asked if she could determine the sex, but since there was very little amniotic fluid left, she couldn’t tell. When the doctor came in, he said this isn’t good. Over the next several hours, I remember calling our families telling them to come up. There were specialists coming in and talking to us, and I remember hearing something about 30% chance of survival; my doctor saying it was going to be a roller coaster and Matt crying. But most of all, I remember thinking everything will be fine. After all, it was the year 2000 – they would fix my baby. We would be part of that 30%. Never, not for one moment, did I believe my baby would die. My doctor wanted to keep me pregnant for as long as possible so our baby’s lungs could develop more and so that we could use an ECMO machine (which could have stabilized him until he was able to have the surgery to patch the hole in his diaphragm).

Two days later, on Monday, May 15th, I felt like I was having contractions. The nurse was extremely flustered. She didn’t seem to know how to work the machine that monitored the baby’s heartbeat and she kept telling me I wasn’t in labor (what she was doing on the high risk floor, I’ll never know!). By the afternoon, the doctor came in and gave me some Demerol for the pain. By this point, I was physically and emotionally a wreck but the Demerol completely knocked me out. They finally realized they couldn’t stop the labor and the baby was coming. They wheeled me down into labor and delivery. I was so out of it because of the Demerol that I would push and then pass out. It all happened very fast. At 3:08, Connor Ellis McLuckie was born. He weighed 4 lbs. and 3 oz. and was 16.5 inches long. Matt said, “I told you it was going to be a boy.” I barely remember them holding him up to me because I was so out of it. Then they quickly wheeled our son away.

A little while later, they wheeled me into the NICU – there was our Connor. The baby I had waited my whole life for. He was laid out, with tubes everywhere. I was thinking he should be all swaddled up, that’s the way newborn babies are supposed to be. I wanted to shrink myself down and crawl into the bed and lay beside him. We stayed with him for a while. I felt so helpless and overwhelmed, not knowing what to do.

We had to wait until later that night to see him again. All of it was such a blur. The doctor told us to forget the ECMO, Connor was too small. The nurse told us to sing to him and talk to him about all of the things we would do when he got bigger. I sang, “You are My Sunshine” – the song my mom had sung to me, the song I had sung to Connor almost everyday while I was pregnant. The nurses also told us not to stroke him but touch him lightly. I wanted him to have a bottle, to feed him. I looked down at my tiny infant son and silently begged him to live. I told him that no matter what it took, I would take care of him. One nurse came up to us after the doctor spoke to us. She told us our son’s condition was grave and she wanted us to be prepared. I remember hating her in that moment. We went back to the room and again Matt broke down and I thought, why is he crying? Connor will make it.

Later that night, Connor’s doctor came in. He was so kind and gentle. He told us Connor’s blood pressure was dropping but he thought he had it stabilized. Then about 4am, we got the call - we needed to come down right away. We called our family. We scrubbed in and Matt wheeled me around the corner and I remember seeing my Grandma Wolfe and Matt’s Grandma Honey (both who had passed away years earlier) standing over Connor. They were as real to me as the nurses standing there.

Our family gathered around Connor, talking to him and touching him. We then had to make the decision to turn off his life support. Again, everything was happening so fast, I felt as though I was being led around. I didn’t have time to catch my breath, to think. They said they would take him off the machines and then bring him to us. We were moved to a little room off the NICU. We were waiting in the room and the doctor came in and told us he was already gone. I hate that we weren’t there with him. I should have been holding my son in my arms as he died. When they brought him to us our minister, who had come up to the hospital, asked everyone to leave. As I held Connor for the first time, I was thinking, “this is my baby, I am holding my baby”. He felt so light. He as so tiny and all bundled up. I kissed his nose. The doctor came in and asked us if we wanted an autopsy. I didn’t hesitate – yes; I wanted to know everything that was wrong. I wanted to know why this happened to Connor. Why this had happened to us.

The nurse came in and took our picture. It was so awkward; it wasn’t like we could smile. I wish now that I would have unwrapped him and looked at every part of his tiny body. I wish I had held him longer and had spent more time with him but at the time I felt scared. He was dead and I felt scared. I didn’t want him get stiff and start to look even more dead. We went back to our hospital room. I was numb. I laid there and cried like I had never cried before. I was so exhausted. As I was crying, I heard Connor say, “ It’s okay mommy. I’m okay.” I felt him floating above me.

When my doctor came in later he asked what he could do, I said I wanted to go home. One of the saddest moments was being wheeled out to the car. This was the time when you left with your baby but we were leaving empty handed. This was not the way it was supposed to be. Later that day we went to the funeral home. Why we went that day, I don’t know. I was a zombie, again just being led around. I sat there and planned my son’s funeral. We chose a small chapel and when they asked about a guest book, I didn’t want one. I felt it would be a small funeral, with just family. I couldn’t have been more wrong.

Two days later, we had the memorial service. The chapel overflowed with people. It was standing room only, with many outside the chapel. We just didn’t know. I wish now we had had that guest book so I could personally thank everyone who came, but we just didn’t have any idea that so many people would come to our baby’s funeral. To this day, I still feel badly about not having that book.

The next couple of weeks were filled with people sending cards, plants, flowers, and dinners. I dreaded the nighttime. I hated going to bed. I wanted to stay busy or watch TV, anything to feel distracted. Matt and I clung to each other in those early weeks. It rained a lot that June and we would sit out on the porch and watch the world go by. Everyone’s life was the same, but mine wasn’t and never would be and the worst part was I didn’t even know what my life was anymore. What it should have been was destroyed. I resigned myself to believing that I would never feel true joy again. Oh, I knew, or hoped I could feel happy again but I believed that with every feeling of happiness would come just a bit of sadness. The outlook seemed very bleak.

I couldn’t wait for the photos that the nurses took of Connor to come back but when I opened them, it was awful. He just looked so dead, not the beautiful pictures I had hoped for, and not like the baby pictures I had seen so many times. I wish so much that we had taken pictures of him when he was alive, pictures, video, anything and everything so that I could remember him, alive.

As the next few months went by, I felt so alone. Everyone had gone on with his or her lives (as they should) but I felt left behind. I didn’t know what my life was supposed to be. I was supposed to be at home with my baby. The quietness of the house was deafening. I would go to work, which was so hard. Working as a teacher at an elementary school, I constantly ran into parents with their babies. I kept looking at the clock, wondering what I would be doing if Connor had lived. Everywhere I went, I saw babies. Why them and not me? What had I done to deserve this? What lesson was I supposed to learn? I was going to be a good mom. I was quitting my job so that I could stay at home. Being a mother was all I had ever hoped for. I even felt that Matt had moved on. At first we were both grieving together but now he didn’t want to talk about it. He felt talking about it would make him sad and he was tired of being sad, so what was the point. We went to a grief group at the hospital a couple of times. The leader said that this grief would always be a part of our lives, just not the biggest part. One of the babies had lived for several days and I said if I had only had that kind of time. The lady next to me, had twins who had only lived for 45 minutes, she said she would have loved for her babies to live as long as Connor had. I realized that no matter how long any of our babies lived, it was never enough. Your child is supposed to out live you, anything short of that is simply not enough.

Several weeks later, the chromosome tests came back – Connor didn’t have a chromosomal problem. They called his CDH multifactorial, which I have come to believe is just another term for “we don’t know”. After reading the autopsy results (where I learned my son had brown eyes like his father – I had never seen him with his eyes open), I called Connor’s doctor and wanted to discuss the results. He told me that in the end it was his heart that gave out. His heart. After hearing his heart beat so many times at my appointments, how could it have been beating so strongly?

As soon as we came home from the hospital, I wanted to be pregnant again. I wanted a second chance. I looked at my body and saw the badges of pregnancy, the stretch marks, the extra weight – stuff you hear about but everyone says it’s all worth it. But it's not worth it when you don't have your baby. I felt empty. I bound my breasts, hoping the milk would never come in. Of course it did, a few days after he was born. It felt like another betrayal of my body, my body that was supposed to protect Connor had let me down. I felt like a failure; something I had done must have caused this. What had I done? What had I eaten? It was my body in which he grew so it must be my fault. When the doctor told me that I had to wait six months to try again, I was devastated. I wanted to be pregnant now but he said that my body, along with my heart, needed to heal.

Five months after we lost Connor, I found a group called Cherubs. It was an online grief group for parents who had lost their babies to CDH. I truly mean it when I say that these women saved my life. They taught me how to survive the death of my son. They gave me hope. If they could do it, maybe I could too. Finally, I wasn’t alone. I wasn’t the only person I knew to lose a child. They supported me in a way no one else could. My family and friends loved me and wanted to help but they just didn’t know how. Those months following Connor’s death were my darkest days. I had to put my grief first. I had to grieve and had to work through it. There was no way around it, no escaping it. It was hard for everyone around me. The only place I felt comfortable was with my online grief group. I posted endlessly, day after day. They were always there for me and still are today.

The first Halloween after we lost Connor I was thinking, I should be picking out his costume, he should be going trick or treating, should have, should have, should have…..but then I realized, he wasn’t meant for that. Connor lived the life he was meant to live. It wasn’t, of course, what I would have wanted. I know that I will never understand why this happened. In that moment, I literally felt a weight being lifted off of me. I knew then, I didn’t have to live the rest of my life being obsessed by what should have been. I knew then that I wasn’t supposed to spend the rest of my life asking why this happened but that I needed to ask what could I learn from this. I needed to find the lessons, the good in all of this.

It has now been five years since Connor’s death. In many ways it feels like ten years but there are moments when it hurts like it did that day. I have learned so much since my son’s death. I hope that I am a better person because of him. I believe that God chose me to be Connor’s mother. He knew that I had the strength to endure this.

We have been blessed with two daughters since losing Connor. Emma and Kate are our little miracles. Because of Connor, I know I am a better mother. He taught me that our children are truly precious gifts. Even though I now have my daughters to love, I am still left with this feeling that someone is missing. The tears you shed for your lost child never dry up.

Connor will always be a part of our family. We think of him as our little guardian angel in heaven. We talk to our girls about Connor. I want them to understand that he is their big brother and feel comforted in knowing that he is always watching over them. He is their star, always shining brightly.