There is no textbook to life. There is no rule to follow, no given, no guarantee.
Life is a whirlwind, to say the least. We experience insanely beautiful highs. We experience almighty, heavy, heart-aching lows.
The meaning of life is something we search for, we look for. We seek it in others; we seek it in ourselves. We try hard to follow paths presented to us; to see what they may reveal to us at the end. Will it be an answer to our question? Will it be the divine conclusion of our purpose? We seek clarity in situations and seek help in circumstance. We burrow deep into the depths of our souls to discover the passion of love or the emotion of love. We attain so much connection, good and bad; so much emotion, good and bad. We do this following no guide, following no textbook, only following one essential part of our being…. our heart.
I share this post with the intent to reach others, to hold out a branch to anyone in pain, to hold out my hand to anyone seeking, to support anyone searching and to share love with anyone discovering.
There is no textbook to life and I want to share a part of mine, as painful as it is, to help you see that we are light beings, doing all we can to make our way through life and we are doing just fine.
January 26th 2019 – The Beginning
End-of-Life-Care- These are words, as a family, we never wanted to hear. These are words that give you a final destination. A destination you never wanted to go to with the ones who you love so dear. They are words of emptiness. Words you can’t quite feel a singular emotion to. It’s a confusing feeling and massive ‘smash me in the face’ reality check of…how the hell did we end up here?
On one side, you have the pain. Utterly destroying, agonising pain, knowing that your time with that person is ending. Your time together, in this lifetime, has run its course. You’ll no longer be walking the Earth as husband and wife, brother and sister, grandparent and granddaughter, or in my case, father and daughter. Instead, you will part in a way that you never wanted, completely out of anyone’s control. You want to fight it, search, discover, any possible answer to stop the inevitable from happening. However, you’re not in control. You’ve never been in control. Life will do as it’s meant to do, to every single person. There is no textbook.
On the other hand, you feel relief. You feel the heaviness in your heart lifted, knowing that somehow, in all this chaos of pain, that they won’t suffer any longer. They won’t have to battle to live. They will finally be free. They will leave this earth that they share with you but they will fly high to incredible things. They won’t struggle every day, grieving for the family they haven’t yet left. They won’t have to say goodbye anymore to the ones who visit to give their final words of love and hope. They won’t have to feel the crush in their soul when they watch their loved ones helplessly struggle with the fact that they are soon to part. You all knew this was an eventuality. “Your dad’s cancer is terminal; he is incurable and its too late.” Even though we heard this a lot as a family, after my dad, with his hunger and passion for life, proved them wrong over and over, leaving doctors astonished that he’d pulled through each and every time, we still all knew deep down, in one way or another, our time, our journey, our family as we knew it on this earth, would have a part taken away; out of anyone’s control and it would reshape us as individuals and as a unit for the rest of our lives.
There’s a lot of anger surrounding death; a lot! You ask yourself ‘Why? Why my dad? Why him? Who chooses who lives and who dies?’ There is a lot of worry; a deep grating within your soul. Your heart strains at the thought of others being left behind. In my circumstance, I was overcome with worry for my mum, my nan (my dad’s mother) and my son Leo (my dad’s first grandchild). They individually are strong people. They are at the strongest when they’re with dad. Their souls feed off one another in a circle of beautiful, pure light and love. They are one another’s safety. They are one another’s home. I worried immensely what would happen next. Would my nan, being an older age and more fragile, end up parting with us after losing her son? Leaving her heart crushed and broken. Leaving her half the person she was. Could she carry on? Would my little boy, Leo, be too young to understand why his Grandpa, his best friend, can’t stay with him anymore. Would he feel he was to blame? Would he think it was his own load to carry? How do you explain to a three year old that someone they loved so dear never wanted to leave them; it wasn’t a choice. My dad made Leo a book before he got too sick of all their memories that they shared over the 3 years together, and his final words to Leo, which I will remind him of every time he feels the heartache, are these…..
“My Wishes for you”
Travel the world with passion and fire
Peek under every stone ( you never know what you may find)
Love with all of your heart
Its been tough to say goodbye, but as a family, we’ve learnt so much about using all of our heart, being and strengths
I’m sad that we didn’t get more time together on this planet, I know we would have had so much fun
So my darling Leo, wherever you are today, whatever you’re doing, know that my heart is fully with you
Until we meet again
Grandpa Simone
The biggest worry of all for me, my sister and two brothers was our darling mum. Meeting dad at the young age of 17 and spending 33 years married, she had never really ever learned how to be without him. She’d only ever known how to be an adult with Dad. She’d never really had to face any challenges alone. They had always been with the support of one another. We would sit every day, around dad’s hospital bed at home, during our end-of-life-care journey, watching her loose tiny pieces of her heart day by day. Watching the person she was, the mother she was, the wife she was, slowly melt away, like ashes from a fire. A fire that burnt so brightly, with extraordinary colour and zest but is now slowly diminishing to nothing but ashes, where all that is left is the skeleton, the fragile broken parts, the parts that could, possibly, never be put back together. We knew we were losing our dad but it had never ever come into our thoughts that, at the same time, we would lose her as well.
We were told he has a maximum of 3 days. Who gives him the time? Who says that’s it? What if he and I and all he loves aren’t ready for our goodbye? My dad actually defied the odds, fighting until his very last moment and was on EOLC for just over 7 weeks.
These 7 weeks were unexplainable. A mix of so many emotions. There were times we would lay with him in his hospital bed at home and cry quietly whilst holding his hand. There were times we’d laugh and make jokes, we’d almost forget what we were doing there. We’d forget how many hours, days, weeks, we’d been sat with him. We’d watch film after film; him often nodding off for most of it. We’d have meal after meal, often wondering ‘Would that be his last? When would his ability to eat with his family be ripped away?’ and I use these words so brusquely as that is how it is; basic abilities that the human body can perform are taken within a moment. Your ability to do things unaided and your freedom, just like that, are gone.
One of our dad’s wishes when we started the end of life journey was that we promised him he would never be alone in the room. Someone, out of the 5 of us, would always be next to him. He sobbed to us all, opening his heart. He didn’t want to die alone and he was scared. The pain I felt for him that day crushed me. Watching my dad who, to me, is the strongest man in the world, who is invincible and untouchable, sob and admit the fear that’s within him, was immensely sad. If I could have sacrificed myself in that moment and taken the fear and pain for him, I would have.
The 7 weeks are something that, in a short passage of writing, I could never explain. The pain, the heartache, the deep, deep sadness, are things we cannot remove from our hearts. These are emotions imprinted on me and my family and, even as destroying as it was, it’s a time we would go back to in a heartbeat. A time when the 6 of us shared all the love capable. A time we stepped up to care for dad and hold and love our mum. A time where we showed nothing but support for one another. A time all of us could show every part of our souls, in the rawest form and it be received with complete acceptance, unconditional love, and compassion. The way we were raised as a family had, almost, without knowing, prepared us for this moment. We held one another fully and would not let go until we had reached the end together.
March 18th 2019- The End
Watching you lay in a deep sleep, although peaceful, I could feel your sadness. I sat opposite you whilst mum lay in the chair next to you. I could feel your light dimming, minute by minute, each part within you was fading. There were no tears, no huge display of emotion. It was calm, peaceful but surrounded by a heavy sadness. Your tiny frame was evidence of the battle your body had endured the last 7 weeks. You had nothing more to give. No more energy to continue. You had been consumed, unwillingly, by something stronger, that you could not fight any longer. Your passion for life still shone in your face. Although you were not, When I looked at you, I saw you smile at me. A message that it was ok. You would be ok and although none of us want this journey to end, it would and it was ok.
We took it in turns to kiss you goodnight. Mum and Niamh wanting to sleep next to you.
I kissed your head and felt the warmth of your heart; the unconditional love, the desire to stay, the agonising pull that you cannot fight anymore. I am your daughter and you are my father. I have an indescribable gratitude. Thank you for choosing to share your life with me. Thank you for choosing the 6 of us. Thank you for choosing us all. I love you, dad. Sleep tight.
In the morning, you were no longer there. In the sleepiness of the star-lit sky, your spirit had left the case in which it was carried. You soar with lightness. You have your power back. You no longer feel suffering. You no longer have pain. You speak to us now in a different form. A form you taught us all so well, through the heart. You speak words of comfort and messages of unconditional love. Your message is clear, from you and others that have passed, Do not feel sad… I am free.
A section from the book “The Gift”
The gift of the story you never got to write.
“As I stand on the pure white sand, feeling the ground beneath me, I feel the souls of my feet covered by the grit of the sand. I hear the soft sound of the pure blue ocean, the sea hums a gentle song to me, a song that gives me comfort, I feel at home with it. I look out ahead a see all whom I love across crystal water. The laughter, the love they have between them all fills every space in my heart with utter joy. I look down to my feet and I see my Grandson, Leo, building his creation in the sand. He has a fire, a determination, anything is always possible for Leo and in his presence, anything is possible for me too. I feel the salty seawater around my ankles, the warmth of the sun on my skin.
I look down to my body, a body I hardly recognise anymore as my own, I feel for my scars. The war wounds from my journey in life have faded. I feel my bones and they are no longer grasping on to any fat they can to nourish my body. I no longer feel the weakness. “I am strong.” I stand and breathe. I think to myself, “It’s ok, Simon”. I know that right now, in this moment, is exactly where I’m meant to be.
I take a deep breath. I feel the warmth in the air, the sun on my skin. I know in my heart that my journey in this life has come to an end. I didn’t want it to but I know it’s something I could no longer escape from. Almost 3 years of this painful, yet beautiful, journey have passed. I’m scared but somehow I feel at peace. I have built a foundation of love, of strength, between myself and my family; something so incredible that, even in my absence, the love I’ve created will live on. My Grandson Leo always says to me, “Come on, grandpa. You can make it!“ and those words have never seemed so clear to me, in this moment, I realise, I have made it.“
As my blog name says- there is no textbook!“
- Dear Dad… It’s been four years without you - March 18, 2023
- A letter to you- by Tom Planner - December 12, 2022
- A Pandemic of Grief - September 26, 2021
April 2, 2020
Phoebe, that was a really heart wrenching account of your dad’s last days. Being so far away I had no idea what was happening at the time, particularly of the pain you were all going through. Some time after your dad died, Amanda told me. I was so sad and to be honest amazed that the big bold Simon that I knew could have died. I didn’t know your mum and dad as well as I’d have liked. But what I did know, I liked a lot. your dad’s zest for life made him a hugely likeable man and the, all too few times I spent in his and your mum’s company were always full of fun and so enjoyable.
Cancer is such an incredibly cruel disease, it sneaks up on you, often with no warning as I found out myself back in 2017. I was one of the lucky ones, mine was diagnosed and removed within a couple of short months. So many others aren’t as fortunate as I.
What you have written is a wonderful epitaph for a lovely man. As I said before, I didn’t know him well, but I was fortunate to think of him as a friend.
I’m sure young Leo, will never forget his best friend.
Please give my love and hugs to your mum
Love ‘H’
April 2, 2020
A most heartfelt Thank you Phoebe, for sharing that.
I am enduring those final days here at home with my partner of 45 yrs. Frank.. a few more days will be a surprise.
Take Care and stay safe.
Ernie C
St Pete Florida
April 4, 2020
Really beautifully and honestly written, something most of us will experience but so few will put into words, particularly so eloquently. Words that will resonate with the hearts of many, past, present & future, whether they remember their own experiences, are living through something similar right now or even take a moment to look at what the future may hold for themselves and their loved ones. Thank you for writing this and reminding us all what it means to be human.
May 5, 2020
I lost my mom to breast cancer in 2004. It seems like yesterday. Growing up, I didn’t feel loved or wanted. I had lots of resentment. A sister, 16 years older than me and one who could do no wrong. As we got older, mom became my best friend. With major health problem she took care of me and while recovering, she was diagnosed. I took care of her. The most beautiful moment was a day or two before she passed, she was calling out to Jesus, “Let’s go Jesus, NOW,NOW, NOW! I knelt down in front of her and she thanked God for me. Not my sister, me. I look forward to the day when we meet again.