(126) After the loss of a child the pain will always remain

The pain will always remain.

Many people responded to the Dutch version of the previous blog: Shortly after the birth of your child you are told that it is not going to live long.The responses ranged from compassion and intense grief in similar situations to the pain will always remain.

In summary, the responses to the blog in question came down to the following:

  • No matter how long the loss of your child has been …
  • Months … years … even decades …
  • No matter how long the child has lived …
  • Wounds are not healed …
  • Wounds only get worse …
  • No matter how long it takes …
  • It feels (sometimes) like yesterday …
  • The raw and hard edges of loss will (perhaps) eventually soften a little …
  • The pain of losing your child will always stay with you!

The purpose of today’s blog is to try to answer the questions that arose from these responses. However, everyone deals with loss and grief in their own way. Hence, I cannot give a personal answer now … but I can give you a general outline.

Now for the two questions:

  • Why does it take so long to (perhaps) cope with the loss of your child?
  • Maybe the raw and hard edges of the pain of losing your child will eventually soften but why does it never really go away?
An (almost) consecutive series of moment of loss

It is about an (almost) continuous series of moments of los … like an accumulation of loose stones where each stone stands for a moment of loss, including the accompanying emotions. For each stone … for each moment of loss, you could learn to deal with the loss and the grief that goes with it.

It begins when you are told just after the birth of your child that it will not have a long life … perhaps because it is chronically ill or has an inherited genetic defect … and although the medical profession is capable of much … unfortunately not for your new-born. Or it starts after years when you are informed that your child is seriously ill … and must undergo severe treatment … like with cancer. At those times, you jump from one moment to the next … from immense joy … to intense sadness.

Your heart is pounding, and you ask yourself “how do I continue from here?”

During the following years when you are doing your utmost to care for your child … so that he/she may live as long as possible … there are moments when it goes well with your child … maybe even excellent … and you get hope again. Only to discover the next time (again) that it was in vain because your child has deteriorated even further. Your heart is pounding … you have sleepless nights … you wonder … is this what it is … how do I continue from here … what can I still do for my child?

Eventually comes that moment of loss in the run-up to the death of your child … and finally the death of your child … that ultimate moment … when you have no choice … but to let your child go.

And afterwards? Only then do you begin to realise little by little what a roller-coaster ride your life has been. Finally, you begin to realise that you still have a long way to go in the hope of becoming your “old” self again … only to discover later that you must go on in life with your “new” self. And here a moment of loss arises with the discovery that your “old self” is no longer an option.

In retrospect, you discover that this (almost) unbroken series of moment of loss … can no longer be considered an accumulation of separate stones, each stone standing for a moment of loss and the emotions associated with it. Because of your child’s chronic illness, the many moments of hope and hardship … the almost continuous survival … there was not really time to learn to cope (properly) with loss and grief … it became a continuous process of loss and grief … the stones of the pile seem to have been forged together into large(er) blocks that only complicate your bereavement. Something you don’t want because you have so little time left … for yourself.

That makes it all so hard … maybe extra hard … to (eventually) deal with your loss and your grief and the pain will always remain.

An emotional rollercoaster

During all those months … years … it seems to you as if you went from one crisis into the next. Each time you had to look for new answers because old answers no longer seemed to suffice. It was exhausting … you could not rest … giving up was out of the question … after all, caring for your child was much more important to you. They were feelings that regularly overwhelmed you … shook you to the core … turned your world view upside down … made you insecure. It can’t be right that your child should die before you as a parent … that’s not right … that’s not acceptable, is it? It’s just not fair! Yet it happened!

Your greatest fear as a parent is that you will lose your child … that you will lose (part of) your future. The fear that you as a parent have failed … that you should have done more … that you … that you … And even if no blame can be attached to you … you somehow have the feeling that you have failed.

That we are all going to die one day … we know that … that is, however, difficult it may be, that is okay. But losing a child? Even though you have fully committed to your child … you have gone to extremes to let your child live as long as possible … your child eventually died.

On top of that, what these parents went through during all those months … years … is that they went from one crisis to another … from one moment of loss to another. In the meantime, to learn how to deal with loss and grief for every loss … to find a balance … they just didn’t have the time. They were busy taking care of their child … letting the child live as long as possible … these parents could only … survive.

That makes it all so hard … maybe extra hard … to (eventually) deal with your loss and your grief and the pain will always remain.

Your world seems to stand almost still and your outside world … it rushes on.

Once the funeral of your child is over … when you think you can relax and can come to rest … that all the strain of caring for your child is ended … that you can finally learn dealing with your loss of your child and your mourning … only then do you discover that the death of your child has changed everything … forever!

The loss of your child also makes you realise that your family has changed … that there is an empty place. It will never be the same. During joyful family events … during holidays and birthdays … there is always that special feeling … the feeling of that empty place … the feeling of missing your deceased child.

When you meet friends of your child over the years … who have since gotten married … who may have had children of their own … who may have gone to college … you grieve over all the things your deceased child can never do again. At times like that, you can see that friends of your child have grown older, but you can’t imagine what your deceased child would look like at that moment … other than in the photo that is standing or hanging somewhere in the house. Despite all the loss and the emptiness, you will have to continue with your own life … whether you are ready for it or not. Not only for the onrushing world around you … but especially for your family.

Many people know that everyone has their own way of dealing with loss and grief, and yet you run the risk that people outside your family are seeing you as “someone who doesn’t deal with grief in the proper way.” As a result, you repress your grief at that moment again because you need to be there for your partner, your other child(ren) … for the people around you. In the end you draw back into survival mode … which you had already become particularly good at during the life of your child. Learning to deal with your loss and grief threatens to sneak out (again) … and as the years go by, the people around you stop to think about it anymore … and you are unconsciously stuck in your grief.

That makes it all so hard … maybe extra hard … to (eventually) deal with your loss and your grief and the pain will always remain.

Your outside world has no idea what is going on with you.
Overwhelming emotions

You often hear people say that they sympathise with you … that they know how you feel. One thing is certain … these people have no idea what it means when you lose your child … when the death of your child sends a tsunami of emotions through you, and your family. The feeling is “devastating” … is overwhelming … is almost beyond comprehension … is almost beyond words.

Eventually, there comes a time when you no longer want to talk about the loss of your child with others… to avoid burdening others with your grief. Even if it is only to avoid the label of pity, or to prevent others from consciously or unconsciously avoiding you … because those others are afraid or do not know how to deal with it themselves. You get something like a short fuse … you quickly see whether the interest that the other person expresses is genuine … is real! You quickly fathom all kinds of nonsense stories that do not make sense.

You avoid conversations where others say they have experienced the same thing, if not with themselves then with someone else, only worse. How empathetic are these people? On top of that, the puzzles you must solve … or deal with for the rest of your life … is often a lengthy process. Because the grief is often hard to see from the outside, others will be surprised that you are still thinking about your deceased child … months, years, decades later. They have a strong opinion about this without realizing and understanding what is really going on … what it means emotially for you to lose a child that you have cared for, helped, and cared for as long as possible.

Many people end up avoiding you, consciously or unconsciously. Perhaps it is because they find the loss of a child frightening … they do not want to have anything to do with it … they meet a side of life they are afraid of … a side of life where death plays a role … a side where quite different values are important than success, beauty, and status. It makes you have less and less people around you … often a few others come in their place … and you are left with a small select group of people … real friends who support you through thick and thin.

That makes it all so hard … maybe extra hard … to (eventually) deal with your loss and your grief and the pain will always remain.

Completion

It is a tough journey for the parent(s) who care for and take care of a chronically ill child. It becomes even harder when the child is terminal and eventually dies. However, the journey does not end there. The family journey continues without the child … with that empty place in the family … with that empty feeling inside … with the constant reminders at holidays and family events … with the silent grief not to burden others … with the loss of all the dreams you had for your child … with the loss of (part of) your future.

That’s what makes it all so hard … maybe extra hard … and takes so long … months, years, decades … to finally (maybe) deal with your loss and your grief … maybe that’s why the pain of losing your child never goes away.

(92) A Broken Heart

What if we would have been able to process our grief, under guidance or supervision… would my soulmate then still be alive? A question I probably will never get answers to.

On a warm afternoon in October 1978, our daughter Anne Birgit was born in a hospital. We rejoiced that our long expected first child was born.

Our happiness was short lived however. That same evening the surgeon contacted me and asked if I could come over to the hospital immediately. The meconium, the first excrement of a newborn child, was stuck and there was also a first indication that our daughter might have Cystic Fibrosis. Mary-Anne, my partner, wasn’t informed yet and the surgeon asked us if the three of us could discuss the various options… and then decide how we would proceed from there. Time was of the essence. There you are, being parents for the first time of your life… thrown into the deep.

That same evening, our newborn daughter, hardly 8 hours old, had her first operation in her life.

It was also the first time in my life that my world was completely destroyed. Even today, over 40 years after Anne Birgit’s birth, I can still see the images with my mind’s eye how a beautiful future was shattered in one blow! Not only mine world was shattered, Mary-Anne’s too. I can still see the fear in her eyes… I can still hear her crying from the depth of her soul… searching for words. That evening changed both of us forever.

While our daughter was being operated we took an impulsive oath to each other… that, whatever would happen during our lives… we would always stay together and face whatever was thrown to us in the future… we would always be there for each other. At that moment it felt it was important so that a higher power would allow Anne Birgit to live. One way or the other, that oath to each other gave us peacefulness… gave us an unfamiliar energy… no… power to continue. That power was really needed because at that time we hardly couldn’t imagine what was in store for us… how we later had to struggle in guiding our daughter… and that we would get the privilege to bring Anne Birgit to the Light.

Not many people can imagine what we had to live through those 21 years during the life of our daughter. How high the stress levels were and how lonely we were. Anne Birgit became a beautiful young woman who knew very early in her life that she had not many years to live.  Early in her life she made conscious choices and, she tried to get everything out of her life that was humanly possible. Buy because she would have a short life and because she was good looking… at the outside… we met frequently people who couldn’t or didn’t want to accept her illness. It didn’t make sense in our eyes, but we had to deal with it one way or the other. As if our daughter’s illness wasn’t bad enough, the misunderstanding from others did a great job on top of it.

Looking back, that oath we took to each other during the operation of our 8 hours old daughter… that oath kept us together during our 35 years of marriage. Just now, I realize that the energy and the power we received stands for True Love. It guided us through our darkest and lightest periods of our relation. What I also realize is that from all the problems we had to solve, I’ve learned that whatever happens in your life… and it doesn’t even matter how bad it is… you always get support somehow from the spiritual world… eventually, you always get your feet firmly on the ground. It doesn’t happen by itself though… you have to work very hard to make it happen… and you’ve to devote over 100% of your effort all the time… always!

Life was for Anne Birgit one long rollercoaster ride. Just as unusual life was for her… just as unusual was the period around her death for us… and just as unusual was our bereavement… that is, how it felt for me.

It is said that parents who lose a child are marked for life. That’s true for Mary-Anne and myself, nonetheless different. Isn’t it often said that the loss of a child is not even something you whish to have for your worst enemy? Yes, we agreed with that too… but… on the other hand, the stress levels we had to deal with during the life of our daughter… the angst and the worry that was always there… after her death… that angst and worry… was gone! We didn’t have to survive anymore. Our house became hushed… very silent! And step by step… we got rest in our system… and at the same time… the realization sunk in that our daughter wasn’t there anymore.

With that rest also came unrest again… but this time from a completely different order… the unease to cope with our loss and grief somehow. During Anne Birgit’s life we always had hidden our pain and grief. We had hidden it so deep that we were unable to find and touch it after her death. We understood we had to do something about it… but what, and how… and whom to approach? The family was there too and began to demand attention with as result that nothing came of our mourning… and again… we deeply buried our grief. Yes, burying our grief, we were very good at that… unfortunately.

Slowly but surely our grief began to seep through the cracks from the deepest of our being. And in the period that followed we often went through emotionally deep valleys… and at the same time also over emotionally high peaks because we were together and although we had a deceased daughter we have a healthy son. Too bizarre for words… at the same time to go through emotionally deep valleys and over emotionally high peaks. The result was that our family and the people around us couldn’t see… or didn’t understand… that we went through severe times… so severe that in the end something broke. Mary-Anne, my partner and soulmate, died in 2011 of a broken heart.

Was it so intended or… what if we would have been able to process our grief, under guidance or supervision… would my soulmate then still be alive? A question I’ll probably never get an answer to.

(74) Communication

When you want to communicate with a grieving person you will need to embrace her or him figuratively, you have to listen carefully to the other, you need to understand what is said and you have to show interest in the other. What is more, topics could be discussed which you personally may find difficult to talk about.


The way we mourn or grieve is unique for each of us. Standard solutions are not available for bereavement or for people who find themselves in difficult situations outside their control. But the first thing we need to do, in order to reach out to or to help these people, is to be able to communicate with them.

Provided that someone who grieves or is in a difficult situation is able to talk to you or even is willing to talk to you, you can safely assume that it won’t be an everyday conversation with each other, but that it’s much more about to let the other do the talking about the issues that she or he finds important at that moment. During those moments you will need to be able to show a lot of understanding… a lot of insight of the problems the other is coping with… that you especially have a lot of empathy and… maybe even a good dose of patience. You also need to be able to cope with the (long) silences that fall into the “conversation.”

SJR (NL-077) en MGF (UK-074) shutterstock_163706276What is more, during a conversation with a grieving person charged topics can be often touched upon. Topics of which we have a preference in our culture not to talk about. Topics such as death, life after death, faith and the loss of the other and all the emotions that go along with it. Topics of which you may have opinions of your own. And your opinions aren’t necessarily aligned to those of the other.

In a nutshell, if you really want to communicate with a grieving person you will need to embrace her or him figuratively… you have to listen carefully to the other… and you need to understand what is said… you have to show interest in the other. What is more, topics could be discussed of which you personally may find difficult to talk about. And that is exactly the problem in communicating with people who grieve.

It’s too crazy for words that it often turns out that communication between people is inconvenient or difficult at times. How often do you find that the other understood your message differently than you actually meant it to be… that you didn’t understand the other… or that without further asking you assumed you understood the other? Yes… it’s too crazy for words… we learned very early on how to talk and to communicate. We all should be experts in this field, the thing is… why isn’t that the case?

It would be a major step for all of us when we would learn how to communicate with each other in a better or more effective way. It’s something we can use almost every day and every moment. Communication is not just about the words we say to each other, it’s also about the long silences or… the not telling and the poses of our body that sends silent messages to the other. Communication is also about learning to understand each other, to have empathy for each other and… to accept who we are! Communication also means that we don’t avoid difficult situations (anymore) but that we are willing to communicate with someone who struggles in life or we offer support.

Perhaps at this time it’s too much to ask in our world… but nevertheless… I believe that we must dare to face the challenge together!

Personally I’m committed to this challenge. No matter how hard I find a conversation, I always try to learn from it so I can do better next time. It comes with much trials and errors… but I keep pushing myself to improve!

(73) You Thought It Was Over…

Suddenly there are those memories of that moment… that moment that felt like your world was destroyed. Suddenly you’re back to square one. You thought it was over.


Suddenly there are those memories of that moment… that moment that felt like your world was destroyed. You’re back to square one again. You thought it was over.

At the start of your grief or your loss – that period immediately after the death of your loved one, or the loss of the job you so loved to do, or your illness that can’t be cured – that period just after that intense loss… that period in which you felt that intense raw pain of your loss… at such a moment you are off balance and you are almost at risk to fall over. A period in which you would like to reset the clock. A period in which you would love everything was as before. A period in which you would prefer to crawl into a safe haven. A period in which you withdraw into yourself.

Je dacht dat het over wasAs time goes on you start to scramble out eventually… little by little. You are beginning to get involved again with everything that people around you are doing. In the end you start a number of activities yourself. Hesitantly… step by step.

You’re insecure. For how to proceed… alone… or without that job… or… You’re afraid that you will make mistakes. Now… you need to do or to arrange activities you never needed to do before… you may never have wanted to do. Yes, you expect to make mistakes, but the people around you have a different opinion. The people around you find you powerful… but… that’s not the way how you feel this.

Despite all your grief you proceed step by step… you have to. And with each step you get a little bit more confident.

There are moments you’re going too fast. Something unexpected happens that evokes a memory… like a smell, a color, a voice, a sound… a memory related to that loss. And again the realization that you must proceed alone… or that you don’t have that special job any more… or that you will not heal… or… Again you hit that loss… and you start all over again with your bereavement.

That falling back, repeats itself regularly during the processing of your grief. And each time you may recognize somehow all stages of grief like denial, anger, bargaining, depression and acceptance.

Over time you less and less fall back. Each time this happens it feels a bit different from the one before. The harsh pain of your grief is slowly changing into the moderate pain of your loss. Not that you won’t be remembered of your loss anymore… that your loved one is no longer there. That memory remains with you for the rest of your life.

Little by little you get into balance again. Your heart and your head are starting to balancing each other out. The days return when you are happy again. Days where people can hear you laughing again. Moments that are a delight to you.

During those days something can happen that recalls a memory… like a face, a voice, a melody, a perfume, an image… a memory of that moment when it all started. You can’t see it coming, it just happens to you. And the process repeats itself again. Only each time a bit different. That is processing your grief. That’s the way it feels. Step by step.

When you can review yourself over a longer period of time you could find that each time you fall back… you fall back a bit less in your grief… and at the same time you might see that you also moved on a bit further… and that you became more confident.

Independent from how far you progressed in processing your grief, there will always be moments in your future where you revert to that moment when it all happened. The difference is that when your loss occurred it took a long time to proceed while processing your grief, in the future it will take less time. Eventually those moments change from sadness into moments where you can be proud at yourself because you came at a point at which you can proceed with your life. That you are carrying out new and different activities. That you have got new opportunities. That you are a complete human being again, which you always have been only you thought differently, who has an idea that everything in life happens as you think it should happen. Those are the days when you are in balance.

It might be challenging times for you at the moment or you have to cope somehow with a (great) loss in your life. Yet, I have faith you can become a happy person again who can smile and celebrate life. Maybe not in my way, but certainly in your way!

(58) Would You Call My Friends

Some three or four days before her death she asked me whether I would call her friends so she could say her final farewell to them that Saturday. It is not a questions you would easily answer with yes or no. And yet, I did this for her because I had a gut feeling that the end of her life was approaching much faster than we wanted it to but also because I understood it was important to her.

Anne BirgitThis post is about the days just before the death of my daughter Anne Birgit.

Yes, I hear you thinking:
“You have written several times about this topic. So, what is different now? That you are sad… I understand… it’s part of your future that you’re missing… it is your buddy that you are missing… but… after almost 15 years…?

That our daughter wouldn’t live long, we knew one day after her birth. Year after year we lived with the thought that it might be her last one. Ultimately after almost 22 years, it was clear that she wouldn’t live much longer anymore. Her end came closer faster and faster. We all were aware of that… especially my daughter.

That her death was inevitable, I had accepted long ago. We had lived with this for almost 22 years.

Yes, it is different. Now… I understand.

Some three or four days before her death she asked me whether I would call her friends so she could say her final farewell to them that Saturday. It is not a questions you would easily answer with yes or no. And yet, I did this for her because I had a gut feeling that the end of her life was approaching much faster than we wanted it to but also because I understood it was important to her.

Today I understand that I received a lot of support from my guardian angels. Yes, you can laugh at this, or you can dismiss it but for me it is the truth. Where else do you draw the strength from for calling each of her friends and ask them to visit her a few days later in order to say a final farewell to each other.

There were calls that took more than an hour. There were calls, with the in one hand the phone I was using and in the other hand my mobile to make an emergency call in case her friend I was talking to did not respond anymore. They were all calls where you literally caught people by surprise with your request. What is still clear in my mind even though I did not know many of her friends personally, even after 15 years, was that these calls were very personal, emotional, warm and heartbreaking. My daughter wanted to witness the last two or three calls imagine my daughter’s emotions and mine. There were many tears during those 32 calls.

Calls of which I have always said after the death of my daughter… once, but never again. Calls of which no one has any idea what it meant for me and what it took from me. No one can even closely imagine my pain and distress brought on by those calls. Calls that took an enormous amount of energy from me and at the time I didn’t understand where I got the strength.

Maybe you find this all exaggerated… maybe even presumptuous, but the fact is that words… my words… are by far unable to describe what I felt at the time… and not even close to how I feel to-day.

These are moments in your life I always remember. And when I look back after 15 years, those calls give me much more pain and distress than the death of my daughter. Yes, she was terminally ill. That she had not much time to live there was no doubt about it. Although I’ve accepted her death years ago, the hurt related to placing the calls to her friends in order to say a final farewell to her personally, is still there in great fierceness. Maybe as I realize now; now, after 15 years I realize that at the end of each call, it felt for me as if my daughter died at that moment… and I died a bit also.

That, I think, is the reason why it still hurts.

The calls I made out of love for my daughter; just like everybody else would have done when they are needed to make calls like these for his or her partner or for one of their children. This month’s post is dedicated to them and I wish them a lot of support and strength in particular.