Mind, Body, and Soul

Reflections of a bereaved mother

Lena’s son Kian passed away on December 31, 2023, just shy of his 6th birthday. Kian had Cockayne syndrome Type 2. While dealing with this immense grief, Lena bravely shares her personal reflections to shed light on a topic we don’t often publicly discuss.

Kian and Lena

Guest Post by Lena Mai

(June 28, 2024) - Kian left us on New Year’s Eve. 

I once learned that not only does the body have a shape but so does the mental image we have of ourselves and the world.

When you think of your family, who do you picture? Perhaps your spouse? Your children? Your mental image, or mental model, of your family includes a visual representation of your spouse and children, but also sounds, or smells. Whenever you think of your family, your brain reconstructs this “shape” of family, which may invoke these representations. 

However, what if the outside world changes drastically and the inside no longer matches the external reality? You will have to adapt your mental model to this new state. But that’s not easy and even if you have managed to integrate the new unbearable concept that your child is no longer alive, the old model does not simply disappear. Your brain is inert and the old associations between different mental representations remain. Your brain will repeatedly inform you that there is some kind of mismatch, which inevitably leads to inner conflicts, like when I mentioned in a conversation the other day that I live alone and then shortly afterwards talked about my son as if he was still there.

In my mind, I am Kian’s mother. I always will be. My brain invokes him as my image of family but in the outside world, he is no longer physically alive. I feel a cognitive dissonance, and a yearning to either change the world, or my mental representation of the world to feel better. But it’s hard to alter these deeply-formed connections in the brain. In my head, I am and will always be Kian’s mother.

But sometimes it feels like I am mentally torn apart.

As I grapple with the grief, I recognize that a part of me is missing, as if a body part were missing. But what is missing is not visible from the outside. It happens in the mind. 

In Papua New Guinea, there was a tribe where women used to cut off their fingers after the loss of a close relative, making their grief literally visible and tangible.

If a finger is missing, you have a persistent impairment that is always noticeable when you want to use your hand. The wound heals and you learn new techniques to use your hand but some things are no longer as they were before. It is a permanent disability that will limit the women concerned for life.

The mental amputation that remains due to the loss of a beloved child also feels like a permanent impairment to me. 

It’s hard to compare both because one happens in the mind and the other in the body but as an analogy it feels exactly like that. I too feel like I am missing an essential part of my own.

Yes, time makes it easier. The almost unbearable pain gives way to the realization that something is missing. But the disability remains and will probably accompany me for the rest of my life. 

Unlike the missing finger, it is not visible. Hence my desire to make it visible on the outside. Not just so I can see what I’m feeling but to make it present so that others can see it too: it’s the desire to erect a monument to my child. 

My son Kian was the realest person I’ve ever met. He never played a role or tried to be someone that he wasn’t. He was just Kian and uttered his needs in the moment that he felt them. He was, in every sense of the phrase, only his true self. 

He knew what pure love was and shared it generously with me and the world. He was sometimes angry and upset but never resentful. He knew no mistrust, hatred, envy, resentment or all of the other things that divide people and bring so much suffering into the world. He had a pure mind, and his soul was a great enrichment for all who got to know him.

The memories of Kian are still vivid and full of life, I feel like he is still here - rich in different impressions. I can still feel his touch and the warmth, the smell and the weight of his body. I still hear his laughter and his voice, with which he made such unique sounds. And it hurts so much that I can no longer actually hold him, hear him, smell him and feel him. It sometimes feels like what I imagine a physical withdrawal from an addictive drug might feel like: cravings, trembling, restlessness, and much more. 

But there is no going back - or relapse - to stay in this metaphor. Only the memories remain: Kian is no longer there. And I am so afraid that they will blur over time and become increasingly vague and imprecise. But I can't stop the inescapable passage of time and this burden lies on me like a ton of bricks.

I’ve also realized that managing grief requires an active confrontation with the deceased, and also with myself. It requires reflection, planning, and action. It necessitates locating myself in time. Being in the here and now, perceiving the moment but also reflecting and planning for the future. 

Grief is relationship work: working on the relationship with the deceased and at the same time the relationship with oneself. 

It is called work because it is not easy. 

I'm still here and still me, but I'm not the same person I was with Kian. A part of me has died with him. 

I must now come to terms with this new me, and get to know it. There is probably no way around it. This new me carries on the deep traces that Kian left behind, traces that are an integral part of this new version of myself.

Kian is missing not only on the inside but also on the outside. And even if he slowly finds a new, permanent place inside me, this “new” fixed place of his will be missing on the outside. The inside will not mirror the outside.

Hence why I have the desire to erect a monument for my precious boy, a need that is growing inside of me. But I am not yet at the point of constructing it. 

At the moment, perceiving the loss in the here and now, reflecting on what happened is the top priority. The thought of planning a future with the new me, without Kian, is still difficult even after six months. 

I am still trying to fully grasp the concepts of mind, body, and soul in relation to losing Kian. First the body reacts to the grief, then the mind somehow manages to grasp concepts, but is there more? Is there such a thing as a soul?

If so, it is probably the part in each of us that always remains connected to the other and corresponds neither to the image of the body nor that of the mind. It is what was there from the beginning, even before Kian was born, and what remains.

When I talk to others about Kian, we remember things that he did and what we experienced together with him. He had a body and a mind, but there was something more - that which made Kian what he was. The “something more” that is so hard to grasp and even harder to describe in words. His soul.

There are the traces that Kian left in the minds of the people who knew him that are ever-present. I wonder then if the soul is that part of the person that is not bound to the person's body or mind, but lives on outside of it in the minds of other people? It seems to me that the soul comes and goes when we, the people who knew this soul, take it in or let it go.

Kian was here. He was real. He left visible traces in the world. His radiant soul is all around me. 

Kian taught me the most beautiful and most important thing in this world: pure, unconditional love. 

And this love is in me, around me, and carries me. 

I’m still here. What’s next? I don’t know. This is where I am now. This is all I can offer for now. 

I love you, Kian. I miss you, baby boy.

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I want to extend my heartfelt thanks to Riaan Research Initiative for all of the valuable work they do. Their efforts advance research and give hope to families with a child with Cockayne syndrome. They raise awareness about Cockayne syndrome and provide a platform for deeper insight into the life of a family with a child diagnosed with CS. I’m so grateful that RRI is here for our families. Please consider supporting their efforts to advance the development of a treatment and donate here.

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To send a message to Lena, please email us at info@riaanresearch.org.