(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.