(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.

(125) Shortly after the birth of your child, you are told that it has not been granted a long life

The raw mourning caused by the loss of your child eventually turns into the gentle pain of grief. The sharp edges go off, but the pain of losing your child never passes!

Estimated reading time: 8 minutes

After the birth of your child, you hear that it has not been given a long life

If, as a parent, you are told at the birth of your child that it is seriously ill and has not been given a long life, then you step into the most intense rollercoaster ride of your life you can imagine. How do you explain to your family, friends and acquaintances what is going on with your new-born? How do you explain what the future holds for your new-born?

And so, it begins

They are not easy conversations with the family! Certainly not when your new-born child looks fantastic despite everything and some family members simply cannot accept that your child is seriously ill. Or because your child has a disease that is genetically linked to one of the family systems … or even both. How do you deal with this within your family? Not to mention the world outside your family. And finally, … how do you deal with it?

How do you continue together when you later discover that the number of friends around you is slowly decreasing? As if they find it difficult or prefer not to be near you anymore. As if you yourselves … you, your partner, and your other children … don’t have a hard enough time. In the end you try to let everything that happens outside your family, slip away from you because your child and family are infinitely more important. But that is easier said than done. It adds an extra dimension to all the problems you already have.

Unconsciously you enter a survival mode

Unconsciously you end up in a survival mode in which you are always fighting for your child to be able to live if possible.

There are times when things are going so great, as if nothing is wrong and your child seems healthy. There are also those moments that are so sad, and your child is so sick that you must rush to the hospital … at that moment you are so afraid that it won’t come home again.

Sometimes those powerful emotional moments come right after each other that you switch in a fleeting moment from joy to fear. Eventually you find repeatedly asking yourself with the thought if this could be your child’s last year?

Maybe by now you have learned not to show your emotions and the pain in you and your family anymore. Because people don’t understand. Or because they think that the pain for themselves or one of their acquaintances is much severe than yours. Or because they ask you the social question “How you are doing?” … but are not interested in your answer at all.

Finally, home Your child can no longer sustain the strength to move on
Finally going Home

And then it comes, always unexpectedly, that inevitable moment when your child shows that no matter how much it wants … how much it loves you … it can no longer muster the strength to move on with life … no longer wants to live … and decides that this is enough … it wants to go Home. How can you, as a parent, finally have the courage to give your child permission to go Home … no matter how hard that may be for you? Nights will be long and sleepless for you … if that wasn’t the case already.

The run-up to death

Eventually come those in and in sad moments where you can consciously experience the run-up to the death of your child. During those days you can only be there for your child, while you would still like to give your child so much. You would like to continue to fight for your child. You would so much like to switch with your child.

However, at a certain point, usually unexpectedly, it becomes quiet around you. Your world seems to tip over and slowly comes to a standstill. It feels like a moment of intense peace. It is the moment when you give your child with all the Love you have, permission to go Home. And you realise that everything has been said between you in Love and Light.

As soon as you have given your permission, slowly, very slowly your world begins to turn again. You begin to hear all the sounds around you again. It is also a moment when you feel a deep inner peace and realise that it is good … as if it should have been like this!

And then

From the birth of your child until the day you allowed your child to go Home, you were in survival mode, maybe for years. No matter how lovingly you were able and allowed to go with and support your child all those years, you were always alert to whether your child was doing well. You yourself probably would have often ignored yourself, after all, your child’s health was to you much more important. The consequence of this can be that during all those years you have pushed your feelings away … which is a thing you can do easily by now.

It became silent at home now that your child is no longer with you. Yes, your partner and your other children are (perhaps) still there, but the child you gave all your attention to is no longer there anymore. The absence is missed by all and with you the most.

On the other hand, perhaps you or your family are happy that your child is at Home; simply because your child had a hard life and finally lost that sick body. It is the beginning of a period in which slowly but surely the “natural order” in and around the family is or can be restored. In my experience this process takes almost as long as your child has lived. In my opinion, your emotions also run much flatter after the death of your child, because you dealt year by year with the thought that your child would die rather sooner than later, than when your child would have suddenly died in a tragic accident.

Suddenly you run into limits again
It will always hurt

And suddenly you run into a line again. Most people in your life are not used to the fact that the mourning after your child’s death can be long. Certainly not in today’s times where everything must happen faster and faster. Likewise, these people are not used to learning that coping with your loss and grief in your case can take quite a long time. Then at some point you get reactions like: “Gee, your child died years ago. Haven’t you got over that yet?” Reactions that cut through your soul at such a moment because it still hurts so much for you. There is no point in explaining this to the other person, he just doesn’t understand it; you had had that experience long before. The result is that almost at once … you switch back into your survival mode again … you have become incredibly good at it by now.

But do realise

But do realise that it is good for you to learn how to deal with your grief and loss. Realise that you can’t always do it on your own in this case. Also realise that you cannot always seek support for this from your partner. After all, your partner also must learn to deal with the same loss. The longer it takes, the better it is for you to seek help from a professional practitioner with a lot of empathy and experience for your situation.

With reliable professional training for counselling in the field of grief and mourning, the requirement is that a counsellor, can counsel a client as far as the counsellor him- or herself is capable with dealing him or her own loss. A great deal of time is spent on this during such a training programme. In short, you could also opt for a programme in which you are certified as a mourning counsellor as a bonus. You will never receive the certificate of such a programme as a gift. You must work very hard for it. Besides, you must work very hard anyway, because learning to cope with loss is very hard and difficult work. Perhaps this is a wonderful new challenge for you, because the loss of your child allows you to find a new destination in life.

On the other hand, if you are looking for a grief counsellor to teach you how to deal with your loss and grief, make sure that this counsellor has experience and knows very well the limits of his or her own loss.

And now a final comment

In this contribution I use the words learning to cope with your loss and mourning. It is my experience that the raw mourning caused by the loss of your child eventually turns into the gentle pain of grief. The sharp edges go off. But the pain of losing your child never passes!

Paradoxical as it is … despite all that sadness … all that pain … and all that loss … in hindsight I would not have missed a day of it. It is what it is … and that is not always easy.

(124) Laugh with all your heart, despite your mourning

Laughing with all your heart after grief and loss

People generally avoid loss and mourning. One does not always know how to react, what to say to a grieving person. From subjects like loss, mourning or death, one becomes sad, gloomy, quiet. But why shouldn’t you be allowed or able to celebrate that the other person, your deceased loved one … that that special other person has somehow accomplished the tasks in life and is allowed to go home. Why shouldn’t you be allowed to celebrate that? Laugh with all your heart and soul, despite your mourning!

Awareness

Recently, after a conversation with a friend, I noticed that I had been laughing with her. That laugh came deep inside … from my core … my soul.

Laughing with all my Heart and Soul
From my Soul

Hours later it dawned on me that since the death of my daughter Anne Birgit, now more than 20 years ago, I had seldom done this! And because of the death of my wife Mary-Anne, already 10 years ago, I was not aware of how I really felt … how I was in life. Even though in those years I worked on myself … alone … or with others. Still, in those years I was able to enjoy life … have fun in life. But despite all that … or perhaps because of all that … that awareness that I had estimated from the laughter … felt to me like a thunderclap in clear heaven.

An ambivalent feeling

That awareness of that laughter deep from my heart gave me an ambivalent feeling. On the one hand it tasted like more … I wanted to be able to laugh more often with all my feelings. But on the other hand, why hadn’t I discovered this in myself sooner … hadn’t I become aware of it sooner?

Yes, I had often laughed and had fun after the great loss of both my soul mates … but somehow it wasn’t real … it didn’t sound real … as if something was missing … something deep inside.

And then all of a sudden … all of a sudden you come across statements by “verken je geest” on Facebook, translated from the Dutch language, like “It’s striking that a smile can have two different meanings … you can use it to show how good you feel … and … to hide how bad you feel”. Or a statement like “The people who laugh the most are the people who have suffered the most”. Yeah, I came across those statements suddenly after I realized that I had been laughing from all of my heart. Or did I not notice such statements earlier? I don’t know.

Light and Love

I want to heal myself and/or be healed so that after all the loss and sorrow that I have experienced so far, I can … really laugh with pleasure … really enjoy life … and really trust myself … love and light in my life are central again. But then I must go inside, to my feelings, to my heart … to my soul? Do I dare to do that? Will I succeed … or … With the help of others, professional experts in experience, it should certainly be possible.

At the same time with that insight I feel a deep peace coming in … as if I finally dare to make the leap to that part of the path that is full of obstacles. Or as Frank A. Clark describes it: “If you find a path without obstacles, it probably leads nowhere.

Conclusion
Dare to take that path ... that path with its many obstacles and let yourself be surprised by the wonderful encounters and lessons you can learn there. Continue to cherish that path with Love and Light.
Continue to cherish that path with Love and Light.

Dare to take that path … that path with its many obstacles and let yourself be surprised by the wonderful encounters and lessons you can learn there. Continue to cherish that path with Love and Light. Show what a wonderful person that other person was … that loved one you have lost. At the same time, show what a wonderful person you are and that despite your loss and mourning, you may shine in the Light and Love of Life. Celebrate that and Laugh with all your Heart and Soul, despite your mourning!

(117) Hans … 20 years later

I hope I can provide a handle so that you too can learn to deal with your loss and mourning whatever may be the cause.

Hans … 20 years later

20 years later? What happened in those 20 years? Most of the blogs I have written are about the period after the death of my daughter, Anne Birgit, in 2000 and of my wife, Mary-Anne, in 2011. Now I don’t want to write about that previous period. This time I want to share with you how I look at my life today … what I am going to do with the lessons I was allowed to learn during that period … how I want to proceed with my life … in a nutshell, how do I see the future today and am I happy with that now.

I hope I can provide a handle with this so that you too can learn to deal with your loss and mourning … whatever the cause may be.

The way I look at it now

The way I look at it today, I am pretty happy with my life. Satisfied in the sense that I have learned to deal with my loss. The raw grief of the past has turned into the gentle pain of mourning. Both Anne Birgit and Mary-Anne are no longer in my mind every day … but we are connected from heart to heart in a different way. As if we know each other when we think about each other. And when a feeling of sadness comes up, it’s like they’re just sitting next to me.

However, there are still times I suddenly go back in time … when Anne Birgit and Mary-Anne were still alive. I still don’t understand how that can happen… maybe because of a smell, a colour, a voice, an image … but in those moments it’s like it’s all real again. Like the way you watch a movie … including all the emotions and feelings that were present at the time. It is true that these kinds of moments have become less frequent in recent years. But when it happens, it is still exactly as it used to be.

The way I look at it, there is immediately a positive thought for every negative thought. As if these are the two sides of the same coin. What strikes me is that in recent years that positive thought has come more often and is stronger than that negative one. That feeling … that positive feeling makes me a happy person. But I should remark that the joy in me goes much lighter and emotionally much deeper than before … more subdued.

I am very sure I would not have been on the path of life I’m walking now, if Anne Birgit and Mary-Anne would still be alive. Paradoxical as it may sound… on the one hand I would like to have both around me again… on the other hand the path I am on now gives me a fantastic but at the same time also an ambivalent feeling. Presumably that feeling will always stay that way.

What do I do with the lessons from that period

The biggest lesson from that period is that I’ve become an experience expert in dealing with loss and grief. People around me are amazed at this. Because for them dealing with loss and grief is about how you deal with it? Isn’t that completed? Time heals all wounds … right? Yes, you have lost a child… that’s like a rollercoaster … we know that. You have now finished your mourning? When I answer that it’s not about that at all, but that it is about guiding others in coping with their loss and their grief … they become silent … then they slowly start to understand. And at the same time, they also indicate that that would never be their choice. But that aside.

In my previous professional life in industry, organizational consultancy and IT, I have learned to look at processes … at people how they use those processes … how possibly could done this better, more convenient, more user-friendly. In this way, I’ve also observed those past 20 years at how I dealt with coping with my grief and my loss. I used that knowledge to write my blogs.

In the meantime, I have started the training “dealing with loss” at the Dutch organization “Land van Rouw.” The amazing thing about this is that the knowledge I have gained from my experience can often be found in the literature used in the course. Does that mean that my training is wasted energy and money? No, that’s not it! It gives me insight from different angles, perhaps other disciplines. With the help of that training, I can even become a professional experience expert, where I can combine theoretical and practical knowledge of others with that of my own.

How I look to the future now

As I look to the future, I envision a path where, in addition to completing training courses, I use my knowledge and experience to assist people in coping with their loss and their grief in the broadest sense. You also should imagine that people become aware that they are in a narcissistic relationship and that they eventually decide to do something about it… no matter how difficult that can be. Or, people who lose their jobs, are terminally ill, or divorce…

I don’t walk that path alone. Together with others I want to guide people with the aim that grief and loss in any form is the most normal thing in the world and that we can talk about it without taboo. I would love that.

As I now look to the future, I also see that I am also moving the common thread of groundbreaking work from my previous profession into this field. For now, I’m just translating it into the form of giving presentations about mourning and loss in any form, writing articles and writing books.

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As I now look to the future, it will end for me eventually sooner than later … I am currently 72 years old. In the coming years I also want to enjoy myself and have fun. Somehow, I feel like I’m going to accomplish that. And what I would love is for others to continue my work in their own way.

In this blog I wanted to show how I eventually “can” deal with my loss and grief. Yes, “can” … because there are times when I can’t. It is what it is. I wanted to show you that it can be a long stretch, but in the end, there is light at the end of that process.

I hope I have been able to provide you with a handle so that you can also learn to deal with your loss and grief… whatever the cause may be.

(114) I want to be like I used to be …

Mila had set a goal for learning how to cope with her grief; she wanted to be the woman she used to be. In my experience, that goal is subjective. How could you measure that? How could that goal be met in a for her acceptable way?

I want to be like I used to be …

I met both, busy talking to each other, in a cafe somewhere in a village along the Belgian coast. Mila, a fictitious name, was about to burst into tears, her friend had put an arm around her comfortingly. Mila’s friend turned out to have left her, after for her happy years, for another, a younger and wealthier woman. It just wasn’t fair. It turned out she had accepted that he wouldn’t return. Her grief was no less about it. She was deeply unhappy and that was obvious when you looked at her. It seemed like the light had disappeared from her eyes. She wanted to be that woman again she used to be, happy, with a rich smile, sparkling and enjoying everything that life gave her.

I want to be like I used to be
It seemed like the light had disappeared from her eyes
It’s about more than just accepting the loss

Mila had in fact set a goal for learning how to deal with her grief; she wanted to be that that woman again she used to be. In my opinion that is a subjective goal. Because how could you measure that? What if she only achieved a little of the desired result. Is that acceptable to her or not? To what extent should that goal be met for her to be acceptable at all?

Mila made her mourning unnecessarily complex by setting that goal. Why not start processing your grief and see where you end up? And then, depending on the course of the process itself, adjust here and there somewhat. Maybe she even discovers life paths and results that are much more attractive afterwards than what she had initially conceived.

It’s about making choices

To move forward in life and at the same time achieve her goal, Mila will have to make choices. Which choices? That’s not for me to decide, that’s up to Mila! If she does not make a choice however, she literally stands still and does get any further in her life. And you know, you never get absolute certainty for making your choices. After all, once you have taken the first steps after a choice, everything changes because things that were previously hidden from you now become visible. In short, it makes no sense to consider in detail which choice you should make. Mainly focus on your feelings.

You change yourself through the choices you make in your life. Similarly, you change because of the choices loved ones make in your life. All those choices changed the person you were to the person you are today! Some choices leave scars. The scars that you feel or see in the beginning eventually become less tangible or visible, but they never disappear.

Conclusion

Mila may want to become she used to be again, and maybe come a long way, but what is today will never be the way it used to be. And just as Mila had accepted that her ex-partner would not return to her, she also could accept that she had changed by learning to cope with that loss.

Can Mila then never the one she used to be, happy, with a bright smile, sparkling and enjoying everything that life gives? Paradoxical as it sounds, and especially when she is open to it, of course you can. But then different. Different because emotions go deeper through the experiences she has gained; more understanding has emerged; experiences that have made her emotionally richer; perhaps even a warmer personality; and maybe even doing things that she had never thought possible in her wildest dreams. And maybe, just maybe, she does thank her ex-partner at some point in time in the future because she ended up on a path of life that feels she should have walked on from the beginning. Wouldn’t that be wonderful!