This is one of the stories of my son Marlon. He lives with his wife and 2 kids (my grandchildren) in Spain. He works for a non-profit organization that makes a difference in other people’s lives. He met his wife during one of the many trips he was fortunate enough to experience. I vividly remember the many milestones our family experienced together. The time when our grandchildren were born, how Marlon met his wife, the fantastic wedding in Hawaii, his graduation which made me so proud to see him walk along the podium. And all the little things: the first time he took a step, the first word he said, his first girlfriend. And how could I forget when he broke his finger and came running to me in tears. Or the times when I had to chase the monsters away from under his bed or when I read bedtime stories to him. A lifetime of memories…

The reality is that none of this ever happened. It is a product of my imagination – a day dream – and there is an indefinite number of similar dreams how life could have been for him. Are any of these even remotely like what might have been? I will never know. Marlon died when he was just two days old. He wasn’t given the chance to create and tell his own story past the two days of his life. The pregnancy was perfect, no complications apart from morning sickness. He was full term at 41 weeks when my wife was induced. It should have all been so simple, but it took a different turn. Mistakes, complications, chaos are words that come to my mind when I think of the hours we spent in the hospital. The last 30 minutes of labour changed everything. He did not get oxygen and when the medical intervention finally happened it was already too late. Marlon had suffered severe brain damage, could not breath by himself, swallow or move. My wife was taken to the OR and my son to the NICU. I was left alone with my thoughts and fears. I think I never felt that alone before, sitting by myself in a waiting room in a sterile hospital entrance and not knowing what was happening to my family. When I saw Marlon next he was on a cooling blanket as that apparently helps patients with brain damage to recover better and he was hooked up to many machines with only beeping noises for company in a room separated from the rest of the unit. Two days later my wife and I held him when he took his last breath. I am writing this post on Christmas Eve 2013. This should have been Marlon’s third Christmas with us.

So why am I making up all these details about his life? In my mind this serves two purposes:

The first one is very important. I want people to understand that a person died, a human being. Although close friends and many other people, sometimes strangers, provided much support to us after our children died, others were not able to relate to the magnitude of losing a child. Some people say things like “you can have another one”, “you can be grateful that your son died so early before you had a chance to get to know him really” or “what can I do to make you feel better”. These statements show either indifference, not getting it at all or well-meaning thoughts with a terrible choice of words and expressing oneself. My conclusion is that the death of a foetus (to use the correct medical term), an infant or a very young child is very much misunderstood. Just because my son Marlon was not allowed to live his story, it does not mean that he doesn’t have one. He is as important as any other human being and he is a person who means everything to my family. I get why it might be difficult for some to make the connection. When someone older dies, friends, colleagues and family mourn the death and they remember the life of that person together. Babies who die have never been given the chance to meet many people. I could probably count all the people who met Marlon while he was with us and add a number of people who bid farewell to him after he passed away. For most it was a matter of hours of time spent together, if at all. It is a short time to form a bond for anyone other than family. By extending his story past reality people might recognize him as a person, a unique individual who cannot be replaced.

The second purpose is that it highlights that a death of a baby equals the loss of dreams for the parents. Every parent has wishes for their family about how they hope their family to be. It doesn’t matter if we envision our children as a regular Jane or Joe or as a genius, celebrity or sports star. The devastation is that we will never know. We sometimes don’t even know the color of the eyes of our children. Our dreams never include challenges or problems, even though there would certainly have been many of those. A child might struggle at school, might not be the popular kid, might get depressed, or even worse scenarios. But no one envisions that, we all paint a positive picture. When my son Marlon died, that perfect world ended. All the dreams died with him. The future in all its possibilities was forever altered. And this is why I will never get better (like when I have the flu) or over this (as in overcoming economic challenging times). Our future as a family together has been changed so drastically and it changed the very being I was when it happened because a piece of me died with him. His story was supposed to be the continuation of my wife’s and my story as well and that piece has been ripped apart.

Marlon died in March 2011 and my wife and I are his voice since then. We will keep telling his story and the one of his brother Tobias at marlon-and-tobias.com.

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