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.
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.
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.