Go to content; Go to main menu; Go to languages.

Timothy Paul Johnson Jr.


Timothy Paul, baby with anencephaly

February 16, 2006

We finally decided to start a family. Something we had dreamed of for many years. We had many discussions about what our children might look like, what we would name them, and how we would raise them. We felt that we were very prepared to become parents. We started trying to conceive at the beginning of August. We were ecstatic to find out that we had succeeded on our first month of trying. Everything seemed too good to be true.

I made an appointment with the doctor as soon as I found out I was pregnant. The doctor confirmed our pregnancy and we began making plans to tell our families. We were nervous about how they would react because we lived very far away and we knew they wanted us to wait until we moved closer to home to have children.

We planned a trip home and announced to our families that we were going to have a child. Everyone took the news very well. They were happy to have another member join the family. We began planning baby showers and making lists of things to get ready before the baby was born.

I continued seeing the doctor regularly and always remembered to take my vitamins. It was time for our 20 week checkup. This was the checkup we had been waiting for. It was our first chance to see the baby. We were anticipating finding out whether we were having a boy or a girl and looking forward to seeing our precious child. Everything seemed to be going well. The nurse was taking a lot of pictures and telling us what she was looking at.

All of the sudden the nurse started to act a little different. We weren't sure what was going on but assumed everything was okay. A few minutes later she informed me that she wanted to get a better look at the baby's head and decided to perform a vaginal ultrasound. When the ultrasound was finished she told us that we could wait in a special consultation room so the doctor could discuss the ultrasound with us.

This is when we began to get nervous. We were not sure whether or not this was a normal rocedure because this was our first child.

We waited anxiously in the room for the doctor to enter. When he came in he was accompanied by another doctor. We knew in an instant that we were not about to hear good news. The doctor took no time getting to the point. He informed us that our baby had a defect known as acrania. He continued to explain that the baby had a 0% chance for survival.

He then gave us our options. We could abort the baby, plan to induce labor, or try to wait out the pregnancy knowing that once the baby was born he would not survive.

We both sat there, stunned, staring at each other, and trying to understand what had just been presented to us. How could we come in for a routine checkup thinking that everything is fine only to find out that all of our hopes and dreams were just that only hopes and dreams never to become reality?

On the car ride home we could not stop crying. How could this happen? What do we say to our family and friends when they call to see how the appointment went? This is not just our baby but a member of a much larger extended family. We felt as though we were letting a lot of people down. Having to call my mom and explain that her grandchild would not survive was one of the hardest things I ever had to do.

There are no words to describe the feelings of confusion, heartache, and love. Then while watching my husband pick up the phone to call his dad all of the emotions began again. It was then that we realized just how much love we had for our child.

As I lay in bed crying that night I did not ask for God to fix my child, or make everything okay, I simply asked for God to help us find peace and learn to accept what had been given to us. I also asked Mary to please take care of my baby for me until I could join him in heaven.

Day after day people kept asking us what we were going to do. Are you going to induce labor? Isn't that the best thing to do? It is not safe for you to try to carry the baby to term, what if something goes wrong?

It's not a question that is very easy to answer. We had doctors telling us that aborting the baby or inducing would be good options to ensure that my health was not affected, but aren't there things more important than my health? What about our baby? He is still alive. How do you make the decision to kill your child in order to help yourself?

I am ashamed to say we were a little torn between inducing labor during the third trimester and trying to go full term. After a few weeks of long late night talks we knew that we were in for a long haul. We had made the decision to spend as much time with our child as we could. We would treasure every second that God gave us with this child. We had decided that God gave us this child to have and to love and that God alone had the power to take him away. We always wanted our son and we would do everything in our power to keep him with us as long as we could.

We made it a point to talk to our child as much as possible. We never missed a chance to tell him we loved him. One of my favorite memories of pregnancy is having my husband kiss my belly every night and tell the baby goodnight and I love you. A lot of love came from this child. He showed us the true meaning of love.

Many people questioned our choice to carry the baby to term. They did not understand how much we needed our child in our lives and how we wanted to hold on to every second given to us.

I will never forget being asked the question, "What do you really want to come out of this?" What I really want is for my baby to be healthy. I want him to have a long and happy life on Earth. I want him to stay with me forever. But I can't have that so I am willing to accept what God gives me. I will be happy with whatever I am given.

We went for many more doctor visits, second opinions, and checkups but every doctor said the same thing. This child will not live more that five minutes outside of your womb. There are major heart abnormalities that will prevent the heart from every beating once the umbilical cord is cut.

We were willing to accept whatever came our way. We had decided to assume that the baby would probably die before or during labor since this is what typically happens in these situations. We tried to prepare ourselves for the worst.

I had been to the doctor on Monday, February 13th for a 28 week check up and she anticipated that I would go full term and most likely have to induce labor because the baby would be unable to start labor on its own. She had attributed the back pain I had been experiencing to my sciatic nerve acting up again. She was mistaken.

The pain intensified over the next few days and on Wednesday it became much stronger. By late Wednesday night and early Thursday morning the pain intensified to the point that we decided to go to the hospital. We quickly gathered up our things and headed to the hospital. We had not been on the hospital tour yet and therefore were unsure on how to get to get there. We called some friends at 3:30 in the morning explaining that we were heading to the hospital and needed to know how to get there. They gave us the directions and we were there by 3:55am.

When we arrived at the hospital we expected them to tell us that everything was fine and that it was just back pain or gas. Upon being transported upstairs I had a desperate urge that felt like I needed to go to the restroom. The nurses refused to allow me to go to the bathroom until I had been examined. It was a good thing.

I quickly undressed and got up on the table. The nurse told me that she was going to take a look and as she began her examination water started shooting out of me. There was water on three walls and the ceiling. The nurse was frozen in shock for about 5 seconds. Then she exclaimed, "I see the head".

She told me to take a nice deep breath and out he came. The nurse caught him against her chest. Timothy Paul arrived on Thursday, February 16, 2006 at 4:03am.

I immediately began pleading for them to give me my baby. The nurse looked at me and simply said, "Do you know?" "Yes", I quickly answered and she immediately handed me my child.

I could not take my eyes off of my baby. What a sweet and perfect baby. As a mother I could not see any imperfections in my child. All I saw was a sweet little one that I loved more than life itself. It then occurred to us that we were not sure if it was a boy or a girl. I looked and much to our surprise we had a baby boy!

I kissed him and told him how much I loved him and at that moment I saw him breathing. I looked over at my husband and announced proudly, "I see him breathing, he is breathing!" We are both very excited. It was at that moment that we both knew God had created a special little miracle just for us. As I handed my son over to his daddy for the very first time I got to see him squirm and wiggle in his daddy's arms. I was so overwhelmed with love and happiness that I began to cry.

While my husband was holding Timothy he performed our son's baptism with the tears that were streaming down his face. When he put Timothy in my arms again, I also baptized him in the same fashion because I did not realize my husband had already done so.

I remember holding our son and telling the nurse that I could see him breathing. She looked at me with a very sincere face and said, "I am sorry Honey, but it is just your imagination". I was so shocked. My husband and I just looked at each other. I told her again and she finally decided to use the stethoscope and prove that he was dead. I will never forget the look on her face when she raised her eyes to meet mine and said, "He is still alive. This is impossible. He is too little. He has been given no oxygen. His heart is not formed properly." I just smiled and said, "I know".

It was obvious to my husband and I. We did not need doctors to try to explain anything. We know that with God all things are possible. We left the fate of our child in God's hands and he provided for us. He gave us the most wonderful hour and a half any parents could ever ask for. God did what doctors said could not be done. For this we are forever thankful.

We had a lot of visitors at the hospital. Our friends Lori and Crosby immediately jumped in the car when they found out we were on our way to the hospital. They got there in time to hold Timothy while he was still alive. They accepted the title of Godparents to our son. We are very thankful for their love and support. Our parents also came to the hospital. My Mom, Step dad, and little sister all piled in the car and hurried on the 10 hour drive to see their grandchild as soon as they found out we had him. They arrived at around 5:00pm and were very excited to hold the newest member of their family.

I know they wouldn't have missed it for the world, but they will never know how much it meant to us to have them there. Early the next morning my husband's parents arrived. They were accompanied by his sister and her husband also. Everyone got to see Timothy and spend some much needed time with us at the hospital.

We were able to check out of the hospital on Friday afternoon. This was a very difficult thing for us to do. While we were able to come home, pack, and plan for our trip to Ohio for the funeral services, we had to leave our son's remains at the hospital.

It was very hard for us to say goodbye. Words can not express the emotions that I felt as I placed him in his tiny makeshift casket and watched them wheel him away. I finally had to come to terms with the fact that my newborn child was really dead and would not be with us on Earth any longer.

On Saturday morning, with the car loaded down, we began our trip to Ohio for the funeral services. Before we got on the interstate, we stopped to pick up Timothy's body from the hospital. We had decided that we wanted to be the ones to drive our son across the country to his final resting place. Then we began our first and only car ride with our son. When we arrived in our hometown we stopped at the funeral home where there were people waiting for us. We spent a few minutes holding our son and telling him how much we loved him and would miss him and then we said goodbye.

We were greeted by many family members that evening when we arrived at my mother's house. It was very difficult because we wanted to tell everyone about our son. We wanted them to be happy that we had such a beautiful baby and that we got to hold him and spend time with him before he passed on to heaven. We found it very difficult that everyone was so focused on the fact that he was gone. They were not with us through each step of Timothy's life and did not understand how happy we were to have been blessed with Timothy.

We tried to help them see that while our son was with us he made us the happiest parents in the whole world. It is not the amount of time you have on Earth that is important. It is how that time was spent. With Timothy we learned to treasure every second of life.

Our families were a God send. They were there for us whenever we needed anything. They made sure the service was properly prepared, the programs were printed, the flowers were ordered, clothes were bought, friends were called, and much more. But more importantly they were there to offer love, a shoulder to cry on, someone to talk to, and help dealing with the emotions that come with such a loss.

The funeral mass was scheduled for Monday. We arrived at the church early and eagerly awaited the arrival of our son's body. When he arrived we walked up together to say hello one last time. We brought with us a tiny crucifix necklace to place around his neck so he would always know God is with him, a teddy bear with our picture and an I love you written on it so he would never feel alone, and a blanket that my brother and Mom helped make from scraps of material we used at our wedding to show him how much he is loved and will be missed by his entire family.

Before the mass started I picked him up and held him in my arms one last time. My husband and I both kissed him goodbye and I placed him back in his bed. I remember watching the man from the funeral home as he gently closed the lid. It was the last time I would ever see my son on Earth.

The mass went very well. It was beautiful. There were more people there than I could have ever imagined. I remember sitting in the front pew and thinking, "Why am I not crying? I should be a mess. I love my son more than life itself, but I have not shed a tear." It was an incredible feeling. I felt more at peace during that service than I had ever felt in my entire life. It was as though I had nothing to be upset about. I knew that my child was with God in heaven. What could be better than that? I could never offer my child the kind of love, peace, and happiness that God provides. God gave me the peace and understanding of knowing that while I will forever miss my son, he is in the hands of our creator.

In the days and weeks that followed our son's burial we spent a lot of time praying for him, talking to him, and simply loving and missing him. We would stop by the gravesite just to say hello. These are things that we will continue to do throughout all of our lives. The pain that we feel for the loss of our child will never go away. It is not something that you can make disappear over time. He is a part of us that will always be remembered. We love our son now and forever. Timothy Paul is the most wonderful gift God has ever given to us. He is our beautiful child. He is a child of God. We will forever be thankful for the gift of our son. His life challenges us in many ways. It challenges us to be better people, to put others' needs in front of our own, to love a little more, and to cherish the small things in life. Life is a gift that we should be thankful for and cherish forever.


Timothy's website with more pictures and contact to his parents



Last updated May 4, 2019