ForeverMissed
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An Angel's Story

Shared by John Martens on October 15, 2011

Where to begin is a difficult question for this story. However, since this is story about a life then perhaps I should begin there. The subject of this story is a brave and loving person, one who was able to instill feelings of love from everyone who met him. He was small and yet mighty, quiet and yet he spoke volumes.

His mother is my daughter Emily. My wife and one of Emily's friends were touching Emily's belly feeling the baby move and I was able to capture that moment with my camera. This was after the baby shower and excitement was in the air. Emily was around seven months pregnant at the time.

Emily and her boyfriend Scott go to see the doctor for another ultrasound. They were looking forward to see their little one again. The doctor noticed that something did not look quite right with the head but said that she thought that it was something that would correct itself and he would be fine. She continued to monitor this throughout the pregnancy. The pregnancy went well with no problems and the baby progressed normally.

Finally on December 2, 2007 the baby named Nathan was born. He seemed to be fine and healthy and there was a lot of celebration. There must have been twenty people in that little room as soon as the staff allowed family in. Of course, numerous photographs were taken. I was not the only one, and a person would have thought that there was a huge celebration in that little room and they would have been correct. There was some concern by the doctor that the soft spot on his head was not quite right.

Nathan was happy and growing. His teeth had started coming in and he was making sounds, but he was not trying to raise his head or sit up after three months. On a doctor's visit, the doctor voiced some concerns about this and the fact there seemed to be a lack of muscle tone, so she referred them to Egelston Hospital for an MRI of the head.

I took the day off to meet Scott, Emily, and Nathan there and be with them. Emily was concerned. We were told that it would take a little over and hour to complete the tests but it was much longer before they were through. We asked why and we were told that they decided to do a few more views. I knew that something had been found. Nathan had difficulty waking from the anesthesia because they had to administer another dose for the extended tests.

Emily called me a few days later crying saying that Nathan had Leigh's Disease, pronounced lays, and that it was terminal. I did my best to comfort her and immediately began to do research on this illness.

To quote Web MD: "Leigh's disease is a rare genetic neurometabolic disorder. It is characterized by the degeneration of the central nervous system (i.e., brain, spinal cord, and optic nerve). The symptoms of Leigh's disease usually begin between the ages of three months and two years. Symptoms are associated with progressive neurological deterioration and may include loss of previously acquired motor skills, loss of appetite, vomiting, irritability, and/or seizure activity. As Leigh's disease progresses, symptoms may also include generalized weakness, lack of muscle tone (hypotonia), and episodes of lactic acidosis, which may lead to impairment of respiratory and kidney function. "

To look at Nathan one would not think that there was anything wrong with him at this point and unless a person spent time with him he would not know. His smile was bright and there was happiness in his eyes. He could become angry and he would when I did not have my camera with me. He loved to pose. He loved his baths and loved to go around in his stroller. He also loved to watch NASCAR.

Within a few months Nathan began having trouble eating and was vomiting. This would the first of numerous hospitalizations but through it all Nathan hung in there. When I came to visit he would be waiting for me to bring out the camera and smile at me as long as I did so, but if I did not he made sure I knew that he was not happy. Though he never spoke I could tell what he was "saying". It seems that he knew he did not have long and wanted to leave us with memories of how he lived.

On Friday October 10, 2008 my daughter called me as I was on my way home and told me that I needed to come to the hospital in their town because Nathan was dying and the doctor did not think he would live much longer at all. I live over 100 miles away. After fighting the Atlanta traffic including being held up by a wreck, we finally made it. My daughter had called over and over trying to find out where we were.

We had been at the hospital from Friday October 10, 2008 until late Sunday October 12, 2008. Nathan was not expected to live past the 10th but somehow he improved. Dawn and I left and came back home and went to work on Monday October 13, 2008. Emily said that Nathan was about the same and that they were scheduled for discharge on Tuesday October 14, 2008. Hospice would be meeting them at the house.

Tuesday morning @ 9:15am ET a call is made to me. Of course this would be the one time I get up to go to the bathroom and so it went to voice mail. There had been a call placed earlier to my cell of which I was unaware of. I checked the messages and heard Dawn saying that Nathan had taken a turn for the worse. I immediately jumped up and said I was leaving. My supervisor had been told that Nathan was very sick and that I may have to leave at any time. I called Emily on my way out and she was crying wanting her daddy. I told her that I was on my way. Next I called Dawn and she told me to meet her at her work because she knew I'd be driving like a bat out of hell. Good thing she couldn't see me driving to her place of employment. She could hear me cursing everyone but not see what I was doing. I finally met her and she drove to Rome. It seemed that it took us over a week to get there.

Seeing him was heartbreaking. He was so pale and lifeless looking. I don't think I will ever be able to post any of those pictures that they wanted me to take. You could tell that he was not really there anymore.

Some people do not realize that when they pray they may get what they asked for. Some prayed for Nathan to live and there was a room full of them. Well he did and he continued to be in pain. Sorry but that just pisses me off to no end. It was selfish and inconsiderate to Nathan.

On Monday October 13, 2008, Nathan began to get sick again and the next day; the day he was to go home he went downhill fast. There was a lot of crying and pain in that little hospital room. Emily begged Nathan to let go and be free. My heart was breaking. I have never felt so horrible in my whole life. I could not stop Emily's pain any more than I could Nathan's. Even today I cry when I think about it. The hours were weeks.

Finally on Wednesday October 15, 2008 Nathan died. I will never forget the look of his face, my daughter's face, Scott's face and my hands trembling as I held Emily's right hand. My hand was on top of hers while she was holding Nathan as he passed.

The nurses and doctor all gathered around and helped Emily and Scott clean him. When the undertaker came we all gave Nathan a goodbye kiss.

At the viewing all of the pediatric nurses came by to see him before or after their shifts.

Emily wanted me to develop a slide show for the viewing and funeral. It took a lot out of me and there were some pictures that tore me apart. You can see it on You Tube: http://www.youtube.com/watch?v=yWX425EQgOA

 

Right now things are tough, but we're getting through. This loss has its meaning and Nathan definitely had a purpose in life and I know part of it was to bring people together and to show them how to love and be who you are, raw and real, pain and happiness.

Shared by Emily Martens on October 13, 2011

Nathan always made me laugh. I will never forget that I was so excited for his first Halloween. The first time I  tried to put on his costume he looked at me like "whats that?" lol I know most mothers think this about their own kids but I think Nathan was the most perfect baby and that is why God called him home... Some people ask me how I get out of bed every day and say that I am strong, Others say bad things but.. It really is neither, I have to get up I cant stop living and I know one day I will be with my baby again. I just miss my little man so much! I remember him spitting out food and his first bath. He was so cute, most beautiful baby! God sent me an angel and I guess he needed him back...

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