Jonathan (7 weeks old )
"There is no part of the body that when broken,
How do you tell people about a beautiful little baby boy that never had a chance to experience life in this world as we know it. Other than being born with the original sin of Adam, Jonathan never committed any sin in his life. Why would God allow something like this illness to take Jonathan away from us? After all, we (his parents) were believers. Well, we can say that we live in a fallen world full of sin and disobedience to God. But still, why did this have to happen to Jonathan? The story you are about to read is our story of sadness, deep hurt, loneliness, and finally our hope that we have in Jesus Christ our Lord. We pray that your faith will be encouraged through Jonathan's life story:
OUR TIME WITH JONATHAN
This Story about Jonathan is going to be very hard to do, but I feel people need to know that with God's help, you can make it through any crisis that may befall you. It's hard, but you will make it with God's help.
Our time with Jonathan was a very special time and a sad time too. Jonathan was born on May 8, 1990. He was a healthy 9-lb. baby boy. The doctor said that he was going to be a football player because of his big shoulders.
We spent three days in the hospital after Jonathan was born. My mother took us home because my husband, Russell, was working. Jonathan came home to an excited family that included David (age 5) who was excited to be a big brother now. We enjoyed our newest member of our family so much as we watched him progress to pulling himself around the crib already at this early stage of life. However, at 7 weeks of age, his life changed as he got very ill and we got very worried about him. I took Jonathan to our family doctor because of the high fever. The doctor told me it was a viral infection and that he would get over it. The next day Jonathan's fever was still going up, so I took him to a Pediatrician in a town 45 minutes away. Jonathan was seizuring in the doctor's office so he gave him some Phenobarbital and sent us home. The doctor should never have sent him home in that condition & should have known what he was doing. I was so upset that I didn't question him about what was happening. At about midnight, 8 hrs later, Jonathan was still seizuring, so Russ and I took him back to the hospital emergency room. They admitted him at that time.
Jonathan stayed for a week, but the seizuring never stopped with any of the medications they were giving him. The doctors had been giving him antibiotics but with no results. Finally, the doctor on call sent him to the University of Michigan Medical Center in Ann Arbor, Michigan. Ann Arbor is a 4 hour drive, so they took him by ambulance and we had to scramble and drive down there also that night. The date was July 4, 1990 and the time to vacation turned into a time of unreal sadness and tragedy.
The doctors in Ann Arbor did all kinds of tests and finally said that Jonathan had a vary rare disease called Viral Encephalitis. It damaged all but the brain stem of our little boy's brain. Perhaps if Jonathan had been sent a week sooner, this terrible sickness might not have affected him at all. We (Jonathan and I) were in the hospital for three weeks because Jonathan was on a medicine called Acyclovir which was the only medicine available to treat this virus at that time. They had to give him the medicine through an I.V. After about three days, the doctor in charge of Jonathan's care said that Jonathan had suffered too much damage to his brain because of the virus killing the cells. He told us that Jonathan probably would not live much longer. This news just took the life out of us and we sat there stunned and numb to everything that was going on. God gave us this absolutely beautiful little baby boy that radiated so much love to everyone and now He was taking him away from us. Why?? Why would God do this to us and to Jonathan?? Was He punishing us for all our sin in the past?? We both cried and wondered why this was happening. We both had prayed so much for His help to heal Jonathan and this was the result. Why oh why did this happen? I was so mad at God that I now hated Him for what had happened. Russ told me that it wasn't God that did this to Jonathan. Russ said that he didn't know why God did not stop this though. Neither one of us could really think at all. The grief is so unbearable that there can be no escape at all from this sadness of knowing that your beautiful baby will never be able to have life as we know it in this world.
While we were in the University of Michigan Hospital, (Mott's Children's Hospital), I called our Pastor back home. He is a sweet and loving man and I asked him if he would baptize Jonathan, as I was raised a Catholic and I thought that he would not go to Heaven if he was not baptized. (That is what Catholics believe) Pastor Verlyn said that he would, but he needed us to know that everybody has sin in them and that being baptized doesn't mean that he will go to heaven. I said yes, I know now that this is true, so Pastor Verlyn and his wife came down to Ann Arbor to baptize Jonathan. It meant so much to our Family to know he cared for us. We told Pastor Verlyn that we just wanted to have Jonathan baptized before he passed away. We wanted the world to know that Jonathan was a Christian boy even though he never had the chance to give his heart to the Lord on his own.
After the 3-week stay at the University of Michigan Hospital, we came home. An Ambulance brought Jonathan back to the smaller hospital where the rest of the medicine was given to kill the virus. The doctors in Ann Arbor had said that Jonathan would not live more than a couple of weeks in his condition. They had already called the County Medical Examiner and the local authorities that Jonathan was probably going to die very quickly. Russell and I went to the funeral home to make arrangements, which of course was very hard to do. We made all the choices etc, that had to be made. We then went back to the hospital to bring Jonathan home with us. While all of this was going on, we totally had neglected David as we were so busy with Jonathan and all that was going on. We continue to pray to this day that we didn't hurt David too much.
There were many nights he almost died. But the Lord let him live. WHY? I stayed up with him many nights and when I was too tired to care for Jonathan, my husband and my mom helped me.
To make a very long story shorter, I will tell you that my mom and I gave our lives to caring for Jonathan around the clock. There were many nights that Jonathan would stop breathing and we thought that this was going to be the end. However, God had other plans for us and Jonathan. Slowly over time, Jonathan got stronger and stronger. He soon was out of immediate danger of dying. Little did we know that our Lord would let us have Jonathan for the next 10 years.
Jonathan was like a newborn because of what had happened to him. Over the next few years, my Mom and I took care of Jonathan around the clock. If we were able to get some sleep at night then this was considered a good and easy day. a lot of the time, I was up nights caring for him also as he frequently caught upper respiratory infections. Normal children are active and burn away a lot of the virus that cause these types of illness. Because of the damage done to his brain, Jonathan's eyesight was very bad. He could distinguish between light and dark, but that was all. His hearing was left pretty much intact. When Russell would come home from work and say something, he would immediately turn his head in that direction. We played music for Jonathan most of the time as it seemed to make him much calmer. Jonathan would never walk, talk, or in any way communicate with us except through his eyes. He would always look at who was talking to him. He had real big brown eyes that were just beautiful. His long eyelashes were the envy of all the nurses. Jonathan was very good-looking indeed !!!
In December of 1991, when Jonathan was 1-1/2 years old, my father died at the age of 57. After this happened, my mother could no longer help me to take care of Jonathan because she had to go to work. I was having a hard time with his care and all the time it required. Because my mom was no longer helping me, like she did before my father died, I was getting very tired and was having a lot of different feelings. I couldn't talk to my husband because he was having a hard time with his own feelings. Men and Women's feelings are so different, so I kept things to myself.
For the next 3 years, I devoted my life completely to caring for Jonathan. Russ helped by spending as much time as he could with David and also by helping with Jonathan when he got home from work. This gave me the chance to get out of the house a little bit and also to play with David. However, this was not enough help for me. With the help of the State Health Department, I finally received some respite care provided by them. I still took care of Jonathan 7 days a week for the next few years.
When Jonathan was 5 years old, because of his not being able to walk or exercise, he had to undergo an operation at the University of Michigan Hospital again to help relieve the muscle tension in his hips etc. When he came home, he was in a body cast for about 8 weeks. This was so very hard on him and us. When we think back, it is almost unbelievable the problems we had to go through. Endless trips to Ann Arbor (230 miles) and to Petoskey (32 miles) because of all the respiratory problems he had. He could not walk because after getting this virus he got a secondary disease called Cerebral Palsy. Because of this, Jonathan couldn't walk, so I contacted the local school system to have a physical therapist to work on him and a occupational therapist to help make his muscles work. These two ladies would come to the house once a week to work on him. Also at this time, I learned how to insert a feeding tube through his nose into his stomach. I had to change the tube about once every week, so it was hard on Jonathan. This went on for the next 2 years. It always took about 1 hr to feed Jonathan by mouth also. Russ used to listen to Radio HCJB from Quito, Ecuador, while he was feeding Jonathan. In that way, we kept a little bit closer to the Lord. HCJB is a Christian Radio Ministry on shortwave radio. Because of the care involved with Jonathan, neither one of us could really belong to or enjoy many activities in life. With Russ, it was go to work and then come home and help with Jonathan. With me, I usually went to the store and did what I had to do and then get back home right away. We didn't have much time for David or anything else for that matter. We both prayed that God would help us in some way.
Jonathan is now 7 yrs old and we are now noticing that he is still not getting enough nutrition. The doctor suggested that we have a feeding tube put directly into his stomach. PLEASE get all the facts before you have this done. Listen carefully and ask a lot of questions. I was very upset about what happened when the doctor put the feeding tube in. She put a 4 -Inch cut in his stomach. My Husband said that she was going to do this, but I don't remember her saying anything like this would happen. I was upset that my baby was going through this. I didn't like seeing him in pain. So WHY did they do that? Jonathan was hurting from that for a long time. He couldn't tell me he was hurting but I could tell, mothers know. Jonathan did very well after the tube was put in. He gained a lot of weight which made him so very hard to carry around. He really started putting on the weight after that. My back was really starting to hurt. I finally got help from Crippled Children's of Michigan. They not only provided a new wheelchair for Jonathan, but they helped to pay for all of his medications that were required.
During this time, we were always wondering whether or not God would send someone to help us in his care. We were getting so tired with the years going by so fast. We loved our little Jonathan so much, but we could see no end to what was happening. There was a new couple that started going to our church, Dennis & Janine Tacey. They offered to help us and we were so excited about that. They finally got to the point where they might be able to take Jonathan for the night. We really are not sure what happened, but it never really worked out. The couple had their own family to care for and so we were back to caring for Jonathan around the clock. We kept praying a lot for some extra help. Most of the respite care providers we didn't trust. We couldn't leave Jonathan with anyone who smoked, had small kids, or pets because Jonathan was totally helpless.
I called make -a -wish foundation because it's a great organization that helps children and their parents to make their children's lives happier before they die. We told them about Jonathan and he qualified for help. We asked for a hot tub for him, to help with his muscles. I asked the doctor that put the feeding tube in if Jonathan could go in the tub. She said she would have to ask another doctor. Wouldn't you think that she should know if he could go in the tub or not? Anyway, we used the hot tub to help with relaxing his muscles. Meanwhile, Jonathan would have to go to the hospital for a 3 day stay because of the respiratory infections turning into pneumonia. This would happen a lot and because of this our family was always shook up and disorganized. David seemed to be able to be on his own without too much trouble. By now, he was on the computer a lot and was really getting very good with them. David had a hard time, like all of us living with a handicapped brother and son. And I was so busy with taking care of Jonathan and my feelings of sadness, that I didn't take care of David like I should have. I feel bad about that and wish I could change things but I can't. He is so upset with me. Maybe someday he will forgive me.
Jonathan is now 9 yrs old. We are so tired and discouraged because we are getting no help at all from anyone with his care. I'm very mad at my mom because she does not do anything to help me now. Russ tries, but his work is very hard and he is so tired also when he gets home. We are both now praying for God to help us....PLEASE HELP US WITH JONATHAN !! We prayed a lot and asked God that if He was to take Jonathan home, that he might just fall asleep in my arms and not suffer. Our Heavenly Father helped me so many times by giving me the strength to go on when I was so tired and is still helping me in every thing I do today. During these later years, our marriage almost broke apart because Russ would get mad at me when I said Jonathan needed to go to the Petoskey Hospital again. I always knew when he needed to go to the hospital and I think Russ is really starting to wonder if this will ever end. In January of 2000, Jonathan was seemingly doing ok and then one day I took him to the doctor again because he had a very serious lung infection. They gave him antibiotics and we came home. This was nothing unusual as this was always happening. During the night, his lungs completely filled up with fluids. Russ got up to check on him and get ready for work. He saw that Jonathan was not breathing well and that his color was not good. The day was January 27th, 2000. We both had been praying to God for help. Today, God in all His mercy and grace helped us and Jonathan by what He did next. Brenda called her mom and her mom called some nurses that she knew. They all came over right away. Russ wanted to rush him to Petoskey, but we all knew it was too late for that. He never would have made it there alive. God took Jonathan from us by allowing him to just fall asleep in my arms as I held him. There was no suffering for Jonathan. God in all his love and mercy took Jonathan home to be with Him. People that cared about us came over as soon as they heard. Our prayers had been answered but the loss was so complete that Russ & I and David just cried and suffered alone that night.
Jonathan come to me
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