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May the torch be kept in flame

In memory of my Angel Boy, Benjamín Nökkvi, who kept his fighting spirit alive with extraordinary resilience and love for Life for all the almost 12 years he spent here on Earth.

A human "educational book" - a combination of a personal narrative and insight into my journey with my son who was diagnosed with cancer at 9 weeks old and died almost 12 years later. The book is in three parts, with the last part being an insight into what life after losing a child/a loved one can look like, and the psychological challenges it can bring in society with others. The last part is also based on personal experience, but also draws on clinical experience from working with individuals who have lost someone close to them, and an attempt to explain, from a psychological perspective, the challenges common to many in terms of experiencing chronic illness, long-term stress, loss, as well as processing grief of various kinds.

PROLOGUE

For many years, I found solace in writing a kind of diary entry to help me remember and process difficult life experiences related to my youngest son's sudden but also many years of illness. These writings accidentally turned in to a book manuscript. My purpose in publishing these writings is my experience of the need for a proper discussion in human terms about the challenges that unexpected, sometimes long-term, inhumane stressful situations can bring. How a life journey of people who were completely unaware that they were embarking on a multi-year journey with accompanying storms, did not know the end destination or when they would get there. Benjamín Nökkvi's task here on earth was great and I am convinced that this book can be read as a kind of human educational book, to demonstrate the humanity of all of us. It can show us how life has a way of taking unexpected turns and how we can, to the best of our ability, learn to continue a decent life and even sometimes a pretty good one. Possibly completely exhausted in Life and Soul but still ALIVE...
I have a strong feeling that if this book had a message for people before, I am even more convinced of it in this moment than ever before, because I believe that Benjamín Nökkvi's values ??and standards regarding life were precisely those that many of us will look to and adopt after the global pandemic of the Corona virus is over.
Families are as different as they are many and this is our story. Despite having met all kinds of people and having sometimes had to fight not to let other people's opinions impose themselves on me, but to remain true to my family that I knew best, this is no "preachers" book.
First and foremost, this is Benjamín Nökkvi's book, but at the same time my reactions and lessons learned from living in crazy situations for almost twelve years. I want to pass on that knowledge, even though Benjamín will be up in the clouds scolding his mother for her rudeness, anger, and bitterness at times. This book is not only written for those who have insight into the world of cancer patients or chronically ill children, but for everyone who at some point in their lives has had to deal with an inhuman and chronic stress situation. It doesn't matter what the situation is called if it results in the kind of stress symptoms that can develop in to complete Life Exhaustion. One of the things I have the hardest time hearing as a psychologist is, "What doesn't break you, makes you stronger" - excuse me while I vomit.In some cases, one is simply forced into circumstances that are so inhumane that the above cliché is completely irrelevant and is at worst very hurtful to those who have faced Life Circumstances that do not automatically lead to you achieving "positive, personal growth" and going around in white linen clothes, hand-squeezing wheatgrass, and dancing happily through Life for the rest of your life, making the most of every minute because you are aware that the one thing that money cannot buy is time. No one would consider themselves "lucky" to be diagnosed for example with cancer, just for the reason that it could possibly give a different insight into how we want to live life, that is, if we are lucky enough to get out on the other side alive. Unfortunately, as a professional, I have met patients who have been treated with an attitude that is very illustrative of the saying "what doesn't break you..", for example in the words: "It's almost like I envy you for being diagnosed with cancer, people learn to appreciate life so much better...". If I, like many who have experienced similar life situations, could choose, one should not be tormented by having to stand on the edge of anguish and pain to better enjoy life - if one had a choice, most people would probably choose to avoid such experiences and perhaps make the most of life a little less...
At the same time, I know that people mean well, sometimes we just don't think before we "throw out" such sentences - after all, we are all human. Now I know that Benjamín Nökkvi would undoubtedly "lecture" me for saying such things because he was gentle with everyone and was exceptionally good at conveying honest opinions in a considerate and kind manner.

He was the strongest, happiest, most humble, most grateful, most beautiful soul I have ever met, and my soul misses him so much. His little, soft hand that would slip into mine, seeking help to take his fears away when he was afraid of something, and in the last few weeks when he had difficulty falling asleep – his little, soft hand and the words: “Mom, shall we try again, I believe it will work…”
We set off to the Children's Hospital on the evening of October 4, 2003, half a day later I had entered a new world that I was to get to know well, as my stay there was over 4000 days or 11 years and 6 months. I was still a mother of three children, the oldest turned five years four days after I entered this new world, the middle child was 2 years old, and my youngest child was nine weeks old – the only difference was that now I had an infant with a very rare and incurable cancer diagnosis.
On Labor Day, May 1, 2015, after two bone marrow transplants that resulted in that the malignant cancer regressed for almost 10 years, a diagnosis of a life-threatening lung disease five years before his death, a wait for a lung transplant, and over 11 years of dancing in a world of chronic and constant illness where his life often hung by a thread, Benjamín Nökkvi's body was worn out and could take no more.
His journey to Nangijala took only 3 hours and 42 minutes, my active preparation time was 6 days if anyone were to believe, as this psychologist possibly allowed herself to hope, although I did not truly believe it, that a longer "preparation time" would make the shock and pain somewhat less when my child would die...

Our Benjamin Nökkvi - May 2015

Words of remembrance about our Loving Munchkin:

My youngest child, Benjamín Nökkvi Björnsson, passed away on May 1st. He had been through more in his almost 12 years than most people do in their entire lives, even if two lifetimes. But he went through all his difficulties with a smile on his face and Loved Life and enjoyed it every day, every minute. I am a big believer in some kind of Higher Power, although I do not like religion because I think it has little to do with love, always complicates things and wants to put people in a "box" depending on which religion they adhere to. But having FAITH and Beliefs in something bigger than us humans, I certainly do.
There is therefore no doubt in my mind that Benjamín Nökkvi chose for himself that his journey here on Earth was now over and, as throughout his entire illness, he surprised the doctors and nurses by NOT saying goodbye at all in the way the process "should have been" considering his lung illness. Lying in bed for a few more weeks and not being able to go out for a car ride, to his favourite soccer store and everything else he loved, was just not his cup of tea! He felt completely fed up that by four o'clock, Friday, May 1, he hadn't done anything meaningful and felt like it was just "a miserable use of the day, and the day was just about to end!". He said to me: "Mom, I think we have to go to the Children's Hospital now and I don't think we should count on coming home tonight".
He was right, we didn't come back.
I was so Fortunate to spend some wonderful hours with Benjamín Nökkvi after he was pain-free and later completely unconscious, but every time one of his loved ones came in to our hospital room, and he heard the voices of his siblings and dad when they came to us, his oxygen saturation rose, showing us that he could hear us and knew we were all with him.
I talked to him for a long time (of course it was a monologue) about all the things he could do when he got to Nangijala, the pig he could finally have on the balcony, get to play soccer and just run around, and yes, eat Chicken McNuggets at all times, because you are allowed to have them in every meal in heaven/Nangijala. Benjamin got to say goodbye to this existence surrounded by those he loved, fearless, having had a wonderful week before he died where we had deep conversations about life, thoughts about why some people choose to say goodbye to life when there is no quality of life left, speculations that maybe he would be disappointed even if he got new lungs, because maybe he still wouldn't be able to do everything he dreamed of, and so many other things that once again showed the Wisdom that he brought with him to us on Earth. Benjamin was one of those Masters who knew everything that the rest of us want to learn in this life - Serenity; To enjoy every day; To show sincere love; Not to hurt others, neither in words nor in other actions; To be yourself without being afraid of the opinions of others, and endless other things.
As our priest said at the funeral: "Blessed are the purehearted..."
After traveling with him through the world of serious illness for almost 12 years, I must say that I have never met a braver person and a purer and more beautiful soul.
I promise that we will be "okay", those words of wisdom fell so often from your lips and were seen just as often in your eyes: "Mom, everything will be okay".
I promise that we will continue to be kind to each other, also argue sometimes, cry because we miss you my love, but we will also hold and comfort each other and most importantly of all continue to ENJOY like you taught us so well and continue to be "wacky", a little weird, fool around like crazy, AND, continue to LAUGH together.
I PROMISE!
Rest in peace my love, and I know you have already put together a super football team that will win every league in Heaven.

I love you, always, my Loving Heart.

Mom

MAY 1, 2020 – THE ANNUAL FAREWELL

May 1st has been a very strange day emotionally for the past 5 years.
Late in the evening of this day 5 years ago, our Benjamín Nökkvi said goodbye to this earthly existence and the pain and sadness that this day brings is silently screaming. At the same time, I experience such a strong feeling that Life should be celebrated, in the spirit of Benjamín, and I never feel as strongly about the Joy of Life as on this day, because the Joy of Life, the Ability to celebrate every day and Gratitude for every day, were Benjamín's mottos. We also had time to say goodbye to him.
For a few hours I had the humble and infinitely beautiful task of being in the same consciousness as him, talking to him for almost 4 hours after he lost consciousness, talking about the journey he was about to undertake, to Nangijala. My greatest and most beautiful experience of life was finally holding him in my arms, like an infant, walking down a corridor where I saw a glimmer of silvery white light at the end of the corridor, and I cradled his body into the arms of a being I could see but not the face - for a moment Benjamin rested in two pair of arms and I knew he was safe, that I had been given the privilege of following him as far as possible, and I cradled the weight of his body more into the arms of the being until his whole body was there and I knew the transfer was complete. It had been done in perfect trust, beauty, and without Benjamin feeling any fear. My gratitude and humility having been able to follow him all the way, all the way into the arms of the one who now had to take over and Benjamín was ready to go there, is beyond words to describe, but it was such a privilege to be able to follow him all the way, that I believe that more Beautiful Life Projects are rare on the Life Path, and it gave me Peace in my Heart that I have held on to since Friday, May 1, 2015, the day of Benjamín Nökkvi's farewell.

MAY 1, 2024 – THE ANNUAL FAREWELL

Today it is 9 years since you said goodbye

3285 days since I heard your last words: "I think I just have to rest now……I'm sooooo tired……let's just talk tomorrow……..I'm going to rest now".

I'm going to rest now..

The silence remains and I will never hear your voice again.

Never again.

3284 days since you last looked deeply into my eyes as we laid nose to nose, slipped your hand into mine and said: "Should we try again..", and fell asleep so soundly, with such a calmness over you that I knew I had managed to help you find the peace to fall asleep despite your pain and some kind of inner fear about the journey you were about to embark on.

3285 days since I lay next to you and talked nonstop about how in Nangijala you could do everything you couldn't do here with us -- eating Nuggets in every meal, have a pig on the balcony, run around, play soccer, put on socks without needing extra oxygen due to the your limited lung capacity... - but I couldn't come with you on this new journey, but I would hold your hand until the end of the Journey on this Earth and not let go until someone else took your hand "The Other Side" so that you wouldn't be afraid..

3285 days since I suddenly became aware of all the faces at your bedside, with red swollen eyes, mascara streams.. , and I knew at that moment that your soul had left your body and you had set off, unafraid, to new paths where your worn out body would get a New Life..

3285 days since I walked out of the hospital and had to leave your Lifeless body behind..

For over 4300 days I got the privilege of being your mother and I know for sure that I did an amazing job in that role -- fighting for you to have the best Quality of Life that was possible while you were with us...until the day I had to give you the most beautiful Gift that can be given to a person you love more than your own Life...to be given permission to Let Go, despite knowing that your own Heart would be SHATTERED to trillion pieces and would never be whole again..

Being your mother was an immense privilege - you taught me so many things.. - the most precious Gift you gave me was the wisdom to make good use of your time here on Earth - to "..Live Life Living while Alive..."
- I have tried my best to honour that Gift.
The longing for having you in my Physical Presence has changed over the years, more deeply but softer and painfully screaming..
The longing for a small Benjamin's hand in mine will probably always be what I will miss most of all..providing security and peace to your child is probably the most precious thing you can experience as a parent..

A small, soft, Benjamin's hand in mine...

TO MY MUNCHKIN

Ough, I don't know how to start this my love. I don't know anything how to write a book. I just don't understand that our life's work needs to be in written form. That's how it seems to be, so let's get on with it!

Yesterday, July 28, 2016, was your 13th birthday and I realized that even though we've been on this journey of ours together, you still know so little.

It's been almost 13 years since it began, and you were only nine weeks old at the time.

Let's start with your Christmas gift in 2014, one of which was when you gave me an expensive dress and faux leather pants, both from Karen Millen, because you thought I needed a real elegant dress.
You had for a long thought about that I was dreaming of new leather pants to replace the ones that were stolen from me in Gdansk, Poland in 1996!
Such thinking is so characteristic of you, to keep stories to be able to make your loved ones happy, with gifts, that you had saved up for by yourself, from blood tests, bursted veins, anesthesias, drug treatments so harsh that they almost killed you!
This Christmas, your very last in 2014, you gave me the most valuable and beautiful Christmas gift I have ever received in my life. Your poetry to me, your dad, and your siblings...you knew....

Poem about mom

Mom, mom, mom you are funny and entertaining and cute, it's fun to watch SpongeBob and the Penguins with you and I love you even though you are distant minded and have attention deficit disorder
I am very grateful that you squeezed me out at birth and that I came across you as my mom and I am also grateful for this name.

Benjamín Nökkvi Björnsson