I am slowly beginning to understand why for the second year in a row I have chosen not to celebrate my birthday in any way. Last year, it seemed the natural thing to do. It was just ½ year after Hans’ death, and I didn’t hink I had anything to celebrate.

I am currently going through life trying to do the right things. I’ve attended a psychologist, I see friends as much as I can, go to work, volunteer with patient safety, attend grief groups, talk about my feelings – in short, I act as all experts and other grieving parents recommend. One common trait among grieving parents is, that even if we look, sound and act like we did “before”, it’s an illusion. Vi er seeking a new life with new meaning and new values, a life we hope we can learn to live and which we might even at a point be happy to live. Until then, we play ourselves. The role as myself, is a role I know really well and I’m best at playing it – I have after all, been living it until disaster struck.

Back when I saw the film The Da Vinci Mystery the self inflicted torture by the villain just seemed at filmmastic element to increase drama and mystery surrounding the person. I was vaguely aware that selv inflicted pain is about penance and identification with the suffering of Christ. Still without any greater understanding of the religious elements, there are things in my life, which have given me a greater understanding of the entire concept.

Some months ago I suffered from an illness that potentially can be extremely painful. So painful, in fact, that you kan have Opioide pain relief prescribed. I ended up taking 1 Paracetamol 4-5 times during a 1 month period. Without any masochistical enjoyment of the pain, I wanted it. It seemed to me so unreasonable, that I had watched my own son die after suffering immeasurable pain, and then I couldn’t  even stand some pain which wouldn’t kill me.

I think this is how it is with my birthdays as well. It’s like this, that every morning I wake up, I am reminded that I have survived one day longer than Hans. He should not have died before me, and thus every day, is one day too much. A birthday is a representative for the preceding 365 days, where I have survived my son.
That does not call for celebrations.

With all our individual differences, and DNA, it’s easy to imagine that we are all unique. That no-one else thinks, feels, believes and reacts exactly as we do. My life, as it has formed over the past 16 months, has shown me that the differences are only paper-thin. When it really comes to damage deeper than just the outer layer, we are all very similar. I’m in a group of over 300 parents who have found together over one thing: the fact that we have lost a child. It varies, but when it’s possible to breathe in a forum with so much tragedy and concentrated sadness, it is a place where we can freely communicate with each other about feelings and the things in our new life that are particularly hard . Or just a public place where you can virtually scream frustration over the injustice of life, with the assurance that everyone understands and nobody condemns. When the focal point is the loss of a child, it is truly a cross section of the population. Age, Education, Geography, Background, Extrovert, Introvert … All possible categories are represented. It happens time after time that nearly every time somebody writes about their feelings, about their loss, their struggle to move on in life and about the things that make it difficult, it’s not just me that nods in recognition but everyone else too. The feelings are the same; thoughts, despair, hopelessness … the variations only seems to be dictated by how long since you have lost, not who you are. The reactions and actions are something else – they vary, but the feelings they come from are the same.

When necessary, dreams can be very fast. I consider myself to be a rational person with cognitive abilities above average. I have been in life-threatening and critical situations several times in which I have acted calmly and rationally with an eye for the best approach to the best results. In the morning of 1/1/17 after Hans’s first cardiac arrest, where they got him back to life after 14 minutes of CPR, I recalled that I was asking the doctor what his prognosis was under the various circumstances. At that time, we needed rationality. A little after 16:00, we were in a relatives room when a doctor comes in. He goes to Jackie and me, presents himself and says, “I must tell you that we have stopped treatment.” He does not pause unnaturally before the next sentence, so it takes about half a second to continue. In that half second, I dreamed that Hans had recovered so much that they no longer needed to treat him. Although I knew the prognosis, even though he had been transferred from Hillerød to the Central Hospital with medical assistance and had further cardiac arrest just before … all that was rational and I was too aware of what the next sentence from the doctor would be and my brain could, for half a second, build a defense, a world where Hans had recovered and everything was alright … a dream, to keep the doctor’s next word from being spoken: “Hans Michael is dead.”

Then the dream burst and the nightmare began. I cannot answer how long it lasts. Rationally, I can read from the “old ones” in the group that only after 2-4 years of living a life forever affected by the loss, something resembling something one can call life emerges to be lived and enjoyed. I hear that 14 months “is no time”. I trust it’s right. I now dream of a new life sometime in the future, to replace the nightmare.

Grief is peculiar.
Exceedingly difficult to handle, in reality unbearable and absolutely impossible to describe or explain. None the less, that’s what I will attempt.

Just as ordinary pain, grief and the love it represents, is subjective as it is experienced on the basis of the individual’s identity and emotional profile. To the grieving there are various bereavement support groups that it can be helpful to join. For parents who have lost a child, there’s some comfort and security being with other who are not just grieving, but also grieving for a lost child. It can be difficult explaining to the person who has lost his or her partner or parent why we avoid general bereavement groups when special bereavement groups for parents are available. I would never claim our grief is stronger or worse than others, but I do claim it is different. You can think of it similarly as you think of love. Love for parents, partner and children can not be compared with respect to strength, exactly because they are all different in nature. The love you have for your children is infinite and not least unconditional and that’s what puts it apart from any other love. Love for parents might be similar, but it is still not the same. Here, I believe, we have a possible answer to why bereavement over a child is different from any other bereavement. It’s generally accepted, that grief is expression of love towards a party that are no longer present. And when that love is special in it’s infinite unconditional nature, it’s not so strange that the grief is too.

We are surrounded by the most wonderful people. Family, friends, acquaintances, colleagues – all have the greatest sympathy and do whatever they can to help. Often people do not know what to say when we meet, which is not so strange given there really is nothing to say. Nothing can reduce the pain, the loss or the grief. Typically, we end up with a careful “How are things?” and normally I reply honestly that things are not very well. “It’s improving”, I often say, “but very slowly”.
Occasionally I meet someone who has a desire to demonstrate that they they, to a certain degree, understand what I am going through. It goes like: “I know it’s not the same, but I also got hit very badly when I lost my…” here insert “father”, “mother”, “brother” etc.
I lost my father when I was 17 and I still have unresolved issues from my fathers death, something in connection with Hans‘ death, after nearly 40 years, I am finally beginning to discuss with a therapist. And believe me: It doesn’t even get close.
There was recently an article in a Danish paper, outlining how parents who have lost a child have a shorter life expectancy and a higher rate of sickness and injuries.  Parents die from suicide and accidents. I am in two on-line and one real-life bereavement groups. There are over 200 parents who have lost a child in the on-line groups. I have yet to meet or hear from a single parent who has not at one point or another considered suicide. I have heard of old people who choose to follow their life-long partner to the grave, but I have actually never heard of anyone choosing to follow their parent. There are no-one among the parents I have gotten to know, who in the ½ year has taken their own life, but there are a few for whom I am deeply concerned, primarily because I unfortunately possess the translation guide enabling me to interpret their comments on hopelessness and lack of meaning in life.

Grief is subjective and impossible to explain. I have attempted, well knowing I would fail, but maybe I have still provided a small glimpse into what is happening under the hood. I don’t hope anyone thinks I am claiming that our grief somehow is more important or otherwise more “right” than anyone else’s. I have just noticed – with all of us – an expressed feeling that it is different, and I have now shared my thoughts with you as to why that might be.

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.

Dear Hans.

In a week it’s been 4 months since you died and almost two months since I last wrote you a letter. Is that a long time or a short time? Time. That abstract concept has gained a whole new meaning in my life. There are practically only 3 blocks on my timeline that I can currently relate to: The time before you died. The time after you died. And today … what happens right here and now. Within each of these, everything melts together, especially what happened after you died but before today. Was it yesterday, last week or last month? Not only do I not know … I really don’t care. In fact, almost all of my life awake is about you in one way or another. If I do not talk about you or think of you, I do something to actively avoid thinking about you. Not because I don’t want to remember you, but as a self-defence, a free haven, as it makes me so incredible sad every time the reality of your death hits me.

Last time I wrote you, I had a whole lot of things going on. With others I worked to spread the message of how to recognize a meningococcal infection early enough to be able to do something about it and we have been working at different levels to change the culture of our health system so that we can learn from mistakes made; Among other things, from the mistakes made when you died – mistakes that really never gave you even the slimmest chance to survive. With the help of Danish National TV, we have launched a ship and we know we have already made a difference; probably already saved a life. It gave us a meaning in life – a real reason to get up in the morning. We could, spiritually stand shoulder to shoulder with you, together fight for future meningococcal infected, so they get a much better chance than you, Mathias and Christopher ever got.

Now, with meetings, documentaries radio and TV-appearances over with, we wake up in the morning with one less reason to get up. A little less meaning in life. In that, I know, we are far from unique. In our grief-group we meet too many parents who struggle to find meaning since the most important thing in their lives died. As a moth to the flame, I still go back to the group – though it always hurts me with its huge amount of the most terrible concentrated sadness. On the question of why I do that, the only answer I can come up with, is that it’s because no one else really understands. Communicating with other people whose frame of reference is the same as my own means a lot when trying to find answers to current questions of life – not least the very big one: What’s the meaning?

For the last few weeks, I’ve been so significantly worse than before, that I feared I was heading for a “real” depression. There is a lot of overlap between the way I have felt for the last 4 months and the classic indications of depression, but my state of mind is changing. Last time I wrote you, I was not feeling well. The intensity of the shock was decreasing, the pain was constant and the intensity of the loss was increasing. The intensity of all these emotions did however very from day to day – I could have relatively “good” days once in a while. Compared to how I feel now, it’s as those feelings then were almost superficial. At the moment I feel locked in a deep dark hole. My psychologist thinks, for various reasons, that I am not suffering from a depression as such. In the present, of course, it doesn’t really matter; I feel like I do, no matter what I or a psychologist call it, but I can easily see that if in the middle of everything I was going to have to treat a real depression, it would not make life less complicated.

Recognition is not binary. Recognition exists on many levels. Had anyone, on the evening of January 1st, 2017, asked us if you were dead or alive, we would answer that you were dead. The lowest level of recognition is the factual. We were also then in the deepest shock, so on all other levels there was no realization. As the days went by and as they became weeks, I realized on several levels that you did not exist in the present. You were dead – I couldn’t call you, I couldn’t watch you play football, I could not embrace you … You. Were. Not. There. It is an indescribably hard and painful realization, but for my part, it was a piece of cake to take in, compared to the next, to what I am experiencing now: The recognition that you will not be there in the future. It’s as if you continue to die, again and again. First, you die in reality. Then you die in the recognition of the present. Next, you die in the future – and that happens every damn day I wake up to face it.

As you may know(!), I have been contacted by a clairvoyant who tells me he has been in contact with you. You and I were both equally sceptical about that kind of thing before you died. Before I talked to him, I had the perfect control question. No matter how sceptical I am; If you answered that question … I would know you, or some element of you, really were somewhere in some form. Unfortunately, “it” does not work that way. I have nevertheless opened my mind and thought: OK, it could be right. Perhaps the energy of life is permanent and independent of the body. Then came the considerations: What would I get out of communicating with you? If you exist on another level, a level, I as mortal, simply do not understand, how can I then understand the communication that necessarily has a frame of reference in that plane? What if you tell me that the existence of that plane is so much better than the existence on the earth … why then wait for death? Why not just end this life and join you on your plane? Having considered this and many other questions I have, all in all, decided not to contact you through a medium. “What if Hans really has something important he wants to tell you” says a good friend. I can only say – you are/were the most resourceful person I know. If you have a message you think is important, then you’ll find a way to get it communicated to me. Possibly by contacting the same medium and ask him to pass on the message. Oh, and while you are at it, if at the same time, you could indicate the answer to that secret only you and I know, that would be really cool.

So what happens next? My love for you is as painful as it is strong. I will continue to try to use it constructively in my life while learning to live that life without you. I have yet to even get close to succeed. It seems to be an infinitely difficult task right now. At the same time, I will not forget my love for your brothers and your mother. For my sister. For friends. Unfortunately, it is also painful to see not only their grief over your death but also the grief of our inability, in the shadow of your death, to show and celebrate our love for each other.

Dear Hans. Trusted friend. My dearest little treasure. Hopefully, it will get better and easier over time. Time. That abstract concept has gained a whole new meaning in my life. Time hardly heals all, and in any case it works unbearably slowly.