Most of us really don’t want to change. Why should we? What we want, are small adjustments to the original model. We want to stay the same, only a better version.
But what happens, when something so disastrous happens, that we just change? We change from being a well-known person to an unknown.
So when you see yourself in the mirror, you recognize yourself, but the person inside you, is a different person.
– Naja Marie Aidt
When Hans died, my life changed in numerous ways and with subsequent significant consequences in the short, medium and life-long term. One such consequence, one I share with other parents in my situation, is the total destruction of the existing “I” and the associated deep existentialistic and self-focusing review of what make up important life values.
I was 55 years old when Hans died, and like most, I had a composite identity with a developed personality and my own personal type as backdrop. I was a father, a husband, colleague, football fan, amateur photographer, fitness instructor, neighbour, friend, private pilot etc. – as most other people with a patchwork of an identity. That identity existed on the background of general optimism, humour, openness and joy.
Even without rules or conventions, it is obvious that in the time right after your child dies, you are solely the grieving parent. This is universally accepted at least until the funeral. After the funeral there will be some well-meaning people around you who will have the attitude that you need to get on with life, and that it will be good for me to “do something else” and to “think of something else”. There is some truth in this, but very few understand the time horizons we are dealing with.
In the world of grieving we talk about living your life in two tracks. One forward looking track, which over time will develop into a “normal” life; a life, where I can do all kind of things and generally look to the future. The other track is the grief track. Here, I can look back and cultivate my grief – that is, my love -for Hans. What we learn from talking to other parents much further down the road from their loss is that the building of your forward track takes a long time. At least 2 years, in some cases longer and in a few tragic cases 
it never happens. As an indication consider the “Parent Association Lost a child” where all volunteers have themselves lost. They have a rule, that to become a volunteer, at least 4 years since your loss must have lapsed. That is, they estimate it takes at least 4 years before you can consider yourself well on the way in your new life. When after several years you learn to switch between the tracks at will, it becomes like breathing. You decide when to take a breath… unless you wait too long, and then the body forces you. Those, who master it, can chose when to cultivate their grief and love, for example by visiting their child’s grave and by that, ensure that their “normal” life is free from unwanted changes to the grief track.
What I need to understand – and thus unwillingly force my surroundings to understand – is that I am currently 100% in the grief track. This means my identity, the way I see myself, is 100% father to Hans, who is dead. Alas, I do other stuff, I work and I am happy for my work – probably mainly the fact it distracts from an unwanted reality. I act in day-to-day life as a friend, colleague, husband, neighbour and all the other stuff, but I do not see myself as anything but what I feel I am: Father to Hans, who is dead. That IS my identity.
The construction of the new “normal” life is very much about making my identity composite again – to include other elements than just the grieving. Father to Hans, who is dead, will always be a large part of my identity, but it is my objective, that over time it should not be the only thing making up my identity. I, as I were, have been destroyed. My identity and my values. This means, that part of the process, besides the construction of a new identity, also includes learning to live with and adapt to my new set of values. In the end both my surroundings and I need to accept, that I will never be anywhere near the same person I was, nor will life and relations with me be the same. What I have experienced is comparative to a personality-affecting brain damage.
The lighthouse, which have guided me through life particularly in relation to my children, has always been “happiness” and “joy”. Americans express it very well in their declaration of independence: “…they derive rights inherent & inalienable, among which are the preservation of life, & liberty, & the pursuit of happiness”. The right to the pursuit of happiness. Not happiness itself, obviously – you cannot legislate that, but everyone has the inherent right to pursue their happiness. If I, by one of my children, am asked: “What would you say, if I …” the answer is the same predictable: “If it makes you happy, it’s right”.
I too have the right to pursue happiness, but I have neither the ability nor the desire and I most certainly do not have happiness itself. I am, ½ year after Hans’ death, deeply unhappy and incapable of feeling joy.
Therefore, when I cannot find happiness or joy, the next thing to look for is any meaning. What is the meaning of my life? Is it meaning enough that others want you to be? When in our grief-groups we discuss the topic of suicide, a standard statement is: “You need to be there for your children, your partner, the rest of your family and your friends; think how unhappy they will be, if you were to die now.” I was somewhat taken back, when I read the reply from one of the mothers: “Yes, they (the family) will, but I can’t find enough meaning in my existence if it’s purely for others”. Ouch! That statement brought home to me the bottomlessness of our shared feeling of despair and unhappiness.
With other parents, I have thrown myself into the fight to reduce the number of fatalities from meningokok and meningokoksepsis. Firstly, by working with health professionals from the region, in order to change processes, actions and culture in the health system. Secondly, by promoting public information in order to reduce time before meningitis is suspected, brought to the attention of health professional and treatment is started hopefully resulting in an ultimately better prognosis. THIS is right now the meaning I can find in life. A desperate search for meaning in Hans’ death. A reaction against fate: It just CANNOT be right that such a wonderful boy dies without some good coming out of it.
Based on messages we have received from parents, it is likely that the initiatives have already saved lives. If the most important of the changes and actions the analysis teams come up with are carried out, it is very likely it will save even more lives in the future. More young people will be able to live out their full potential and not least more parents who will live a “normal” forward-looking life without a grief track but in company with their child.
At some point in the future, I will feel that I have done all that I can. I will be satisfied that I have done Hans’ proud. 
At that point, what is today the sole meaning of my life disappears, and I hope I have then built up a new identity and have learned to live with my two tracks so I can again pursue happiness, wherever it may lie.