Take a fresh look at your lifestyle.

Florian Jaenicke: A happy person

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Who are you?

For a year this question could be read every week in the ZEITmagazin photo column. I superficially directed it to my son Friedrich, behind it was another question: how can I connect with him, can see who he is. What kind of character does he have, what is important to him, does he even notice me?

Friedrich, today 14, is "globally retarded" after massive cell death in the brain due to lack of oxygen at birth. He has hardly developed since he was born and will never be able to learn most of the things that we take for granted. Another term for his condition is "infantile cerebral palsy", which is a child's brain paralysis. Medically, Friedrich's condition can be described in page-length findings, which are difficult to understand for the layperson. But what is the meaning of these terms in the relationship between him and me, his father? Who are you: That is why he is asking him a question, even if he will never ask me to do so.

When preparing the photo column, I wondered if there was a risk of acting against his will by making his life public. It is of course impossible to answer that. I am all the more grateful that so many readers wrote to me; if he could answer, he would probably agree. In total there were more than 160 letters. And this is perhaps the third question that this photo column has raised: Who are you? – addressed to the reader who has been confronted with a person for a year that he rarely meets in everyday life. And who, when it does, don't know what attitude to take. Should one regret Friedrich, feel pity for his parents, and be interested in people like him at all? And what does the view of Friedrich have to do with the viewer's view of life?

So why, despite my doubts, this column? I remembered talking to a psychologist shortly after Friedrich's diagnosis in 2005. We visited her a couple of times in an impressive brick building from the 19th century in Hamburg-Altona. Only a few days earlier we had learned that Friedrich's brain had been badly damaged at birth. I said to her at the time that I was so proud of my son that I wanted to show him to the whole world. His first expression, turned blue and screaming tonelessly, was so terrible to look at that I thought he must have been in great pain, and I was impressed by how peaceful he was shortly afterwards and how calm he exuded. And because I am a photographer, I wanted to express this fatherly pride by taking pictures and showing his pictures to others.

But the column was also about something else. Before that, it was just a diffuse urge to tell his story. Only now do I know that I want to show that life is not destroyed after such a diagnosis.

Of course, Friedrich's disability cuts our everyday lives. Unlike most of our friends, when the weather is good, we cannot spontaneously go on excursions or decide to go to the cinema on a rainy Friday evening. Appointments with friends are made with reservations, because it can always be that Friedrich is doing badly, that he has had a seizure or that a supervisor cancels. If we want to see an exhibition, we can't take him out of a wheelchair to change his diapers, so the trip shouldn't take more than two hours in total. When we arrive at the exhibition, the question of accessibility arises, in churches, castles and old museums it is sometimes difficult. Usually there is someone to help carry him up a few steps, but we also had to cancel trips because we couldn't find any parking spaces for the disabled and drove home. It's frustrating, and of course my wife and I sometimes ask ourselves why we have to go through all this.

And yet our life is not ruined, as a commentator of my interview on ZEIT ONLINE wrote: "Fullest, deepest respect for the parents. I honestly have to say that I could not do this and would have given the child up for adoption a long time ago. It cannot be a ruined child ruining your own life. "

The only ruined idea is that life goes the way you imagined it. Sooner or later everyone has to deal with the fact that things don't go the way he or she once thought. But suffering is subjective, some people are blown away if, despite all their efforts, they cannot take the career step that they would like to take, the other loses a child, a life partner and is still happy.

In our case, the challenge is to let go of the dreams we had for Friedrich and to accept another life that is unknown to us.

It was a long time before we could accept that we would never see Friedrich running across a meadow, that he never says mom or dad to us or even looks us in the eye. Many years passed before we were able to remove our focus on what Friedrich cannot do in order to see what he can do: to be a happy person.

It's not an honor to live this life, it doesn't make you wiser and it doesn't deserve more respect. It is as it is. The art is to make the best of your destiny. The hardest thing is when our thoughts revolve around Friedrich's future. Children usually become more independent and eventually break away from their parents. Everything becomes more difficult with Friedrich, both literally and figuratively. And in reality, of course, I often catch myself feeling self-pity shortly before drowning. Ask my wife (or better not ask her).

Who am I?

What did I learn about myself through this column? Although I spent many years sifting through the photos and considering aspects that I wanted to address, the publication in ZEITmagazin led to new insights into my relationship with Friedrich. I noticed that the tasks he was facing me had changed me more than I had previously admitted.

It was clear to my wife and me from the beginning that we would do everything for Friedrich, including to limit his suffering as best we could. From this mission, energies were released that helped us to survive the first time. And we both try to treat our life with humor despite everything and to make something positive out of the situation – this column is one of them. Maybe that's one of the reasons why we're still together. And yet I often look longingly at peers whose lives are less arduous and who have more freedom to live their dreams.

I often have self-doubts as to whether I will do my family justice. Especially on days when we have to change our plans again because we had to give Friedrich the medication the night before after he had a severe seizure. The morning after, he is so exhausted that it is impossible for us to take him to his day care center, where he is looked after and learns the simplest things. Like saying "yes" or "no" about gestures and facial expressions. So someone has to stay at home and take care of him. The day has to be reorganized, jobs have to be postponed or canceled. On such days I often ask myself whether I can still continue my job, I am desperate and question everything: wouldn't it be better to concentrate fully on nursing? Or at least take up a job that ensures a regular income? The best thing is something that you don't have to think about so much. This is how the carousel of fears of existence picks up speed, and suddenly, when I've almost forgotten Friedrich's presence, he puts his hand on my arm as if to say: "Don't worry, everything will be fine."

. (TagsToTranslate) Annual Review (t) parents (t) Photography (t) disabled

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