End of life doula

I completed the Preparing the Way 4 Day End of Doula Training Intensive (all on zoom) in September 2022 and have received my certificate ♡ proud to have completed the training with 8 beautiful people from various places in Australia who will embark on their own end of life doula journey 🙂 during the training on day 1 I had to create a basic message to share with others when I met them & they asked what it was I do in this role. I don’t know it off by heart but if I met you in the street you’d get pretty similar words and description. ‘Hi I’m Debbie & I am an End of Life Doula. I support people with a life limiting illness, in their desire to voice their choices as they transition to their end of the life by means of holding space, while supporting and honouring them on their journey – before, during and after death.’ It is a career that I would like to pursue but am yet to find a way to get my foot in the door of being an end of life doula. In this journey I will be honouring Jacob as I’ve learned a lot about end of life since his passing and I think with what I know now we could have given him a much better send off.

One Friday in May last year my nephew & I were interviewed at my house in the space where Jacob took his last breath (our family room) for a promotional video for Shellharbour Council about helping to get people to have those conversations that make you feel uncomfortable – end of life. Death topics shouldn’t be taboo anymore. We spoke from the heart our experience of Jacob’s passing, not trying to glorify it but sharing to others how you can make a difference in the last months or moments of a loved one’s life. We celebrate life’s beginnings so why shouldn’t we celebrate life’s end cause we don’t get out of here alive. I had the privilege of witnessing his first breath & last (parents should never outlive their children) I will share it once it’s finished in production. Jacob was there in spirit as the camera guy had difficulties with sound & his microphone & we all laughed saying that it was Jacob playing a game with us ♡ knowing his love of making videos & movies. The promotional video we created can be another one of his legacies. You can take a look at the video here aptly called Jacob’s Story ❤️

Planning a wedding while navigating grief

What’s your Grief is a website about grief. It was created by Elanor and Litsa, both are Baltimore based mental health professionals with 10+ years of experience in grief and bereavement. They each have personal experience grieving the death of a parent and much of their site was born from their own search for resources. 

What’s Your Grief is unique because is explores a broad range of feelings and techniques in a creative and uniquely personal tone. I have followed them on social media (Facebook & Instagram) and on their website and have made many grief and loss friends across the miles, particularly with parents who have lost a child. I have tagged ‘what’s your grief’ in many of my posts and they particularly liked a post I shared of Jacob coming to his sister & cousins wedding in his life size cardboard cut out so he could be physically there with us to enjoy the occasion. They reached out to me with these words and of course I said yes. ‘Hi Debbie!!! Hope you’re well. Noooo pressure at all on this if you aren’t interested, but a journalist from the new york times is doing an article on weddings and ways people keep connected to loved ones who have died at the event. Needless to say, you came right to mind with your cardboard cut out of Jacob!?’

I was pretty excited to know that Jacob Wieck‘s memory and spirit will live on in more ways than one, including in this article in the New York Times titled Planning a Wedding While Navigating Grief – Dec 15th 2022 by Abby Ellin. Three little paragraphs of my words in this article highlights how our family honours Jacob at family occasions. Here is the article –

By Abby Ellin

Dec. 15, 2022

Barbara Spina was delighted when her youngest son, Joseph Spina, got engaged in April. She was looking forward to helping with some of the arrangements and welcoming her son’s fiancée, Mariel Milner, into the fold.

She never got the chance. This past July, Ms. Spina suffered a massive heart attack and died while on a cruise with her husband. Suddenly, the happy occasion was obstructed by a dark shadow. Mr. Spina and Ms. Milner didn’t know what to do: Should they not have a wedding at all? Or, hold a smaller event? And how could they pay tribute to his mother without depressing the crowd?

“My mom was so proud of the life Mariel and I were building together,” said Mr. Spina, 32, who lives in Brooklyn and works in business development at MediaLab, a media holding company.

Losing a family member or close friend is excruciating. Period. But the grief can be even more encompassing if you’re planning a wedding, especially if the person who is gone was supposed to play a major role in it. Even more challenging is the fact that cultural conversations about grief aren’t as ubiquitous as, say, discussions about the Kardashians. And there’s no blueprint for how to handle situations that are emotionally ambiguous.

“We do such a terrible job in our culture of normalizing the fact that things are not black or white,” said Rebecca Soffer, a founder of Modern Loss, which offers resources on loss and grief. She is also the author of “The Modern Loss Handbook: An Interactive Guide to Moving Through Grief and Building Your Resilience,” which was published this year.

“I can’t think of any time in my life, except for when I was in childhood, when there was not some kind of bittersweetness associated with any joyful moment,” Ms. Soffer said. “Chances are great that by the time we get married or go through some major celebratory milestone, we will be mourning somebody we wish were present. It’s disingenuous to pretend that celebrations are purely full of joy.”

An online survey recently conducted by Zola, a wedding registry and planning service, and released this month found that 28 percent of the 4,249 couples with 2023 wedding dates said they will be memorializing a relative or friend at their upcoming wedding. Almost everyone also agreed that there wasn’t enough discussion on the subject.

Zola recently partnered with Lantern, a kind of clearinghouse for death-related matters, to create content for couples in mourning.

“It’s OK that not every aspect of wedding planning is joyful and fun and easy breezy,” said Liz Eddy, a founder of Lantern and the chief executive, who lost her father when she was 9. “There’s nothing wrong with you for feeling sad while you’re supposed to be doing something happy.”

In 2006, when Aimee Fortier, an actor and grief coach based in Brooklyn, was 19 her mother was diagnosed with terminal brain cancer. Ms. Fortier left college to be her permanent caretaker: “It kind of dislodged my whole adult life,” she said.

Ms. Fortier, 36, remembers leaving the hospital shortly after her mother’s diagnosis and realizing on a visceral level that her mother wouldn’t be alive if and when Ms. Fortier married. That revelation was so painful that she never made marriage a priority. When her boyfriend, Peter Banks-Kenny, a comedian and restaurant owner, proposed she thought long and hard about what she wanted her wedding day to look like. How did she want her mother to be part of the wedding?

Ms. Fortier, who is from New Orleans, where large weddings are common, didn’t want to elope or go to the courthouse. Plus, her stepmother is a wedding planner.

She knew she would have to rely on other people for support. Her father and a group of her closest girlfriends went dress shopping with her. She deliberately had a large wedding party, with nine bridesmaids and eight groomsmen. Her fiancé’s three sisters were “grooms people.”

While she considered putting an empty chair at a table to commemorate her mother, “that would have brought me down,” she said. Instead, the grooms people wore gardenias — her mother’s favorite flower — in their lapels; she and her bridesmaids slid them into their hair. She also took the words “Love Always, Mom,” which her mother had written in a card years earlier, and monogrammed them in blue onto her veil. “It was near my hand, so I could touch it if I wanted to,” she said, a subtle yet powerful homage that only she could see.

Experts in handling grief stress that there is no one way to represent the person or people who aren’t there.

“Everyone’s ways of coping are different,” said Litsa Williams, 42, a social worker and a founder of What’s Your Grief, an online grief support and education company, and the author of What’s Your Grief, published this year. “It can be helpful in really practical ways to think about, how do I want my connection to my loved one who died to be part of my wedding? And thinking about how that can be personal and private and individual and how it can also be shared and public and something that’s part of the day”

Ms. Soffer, 46, whose mother was killed in a car crash about 16 years ago, had a seamstress snip off a piece of fabric from her mother’s hot-pink, woven wedding dress and create a heart shape. Her mother’s initials were embroidered into the fabric, and the heart sewn inside the hem of her wedding dress.

“I gave myself permission to pull her into the day in a way I really needed to, and I freed up that energy to enjoy myself and not think about how much she wasn’t there,” she said.

Some people, like Debbie Wieck, 58, an early childhood teacher at a preschool outside Sydney, Australia, take even more creative approaches. Ms. Wieck lost her 20-year-old son, Jacob, in October 2015, after a 13-month struggle with Ewing’s sarcoma, a soft tissue and bone cancer.

She made a life-size cardboard cutout of Jacob. She brings it to almost every family function, taking photos with him and toasting him. This past April, he “attended” his sister’s wedding.

 “People may think we’re a bit weird in the things we do to keep him connected to our lives,” she said in an email. But she doesn’t care. “He will celebrate with us future engagements, weddings and births of new generations of family in this cardboard form — next to me, next to us.”

After conversations with his brother and father, Mr. Spina and Ms. Milner decided to hold their wedding on Oct. 14, 2023, which would have been his mother’s 59th birthday. White zinfandel, which she always loved, will flow liberally. Bon Jovi, another favorite, will blast during the mother/son dance, during which they will invite everyone onto the dance floor. Bartenders will whip up cocktails named for his mother, along with champagne and, of course, white zinfandel. They will be served in “Barbs Bar.”

The goal is to celebrate her without dragging down the festivities. “You can keep moving forward with your life and keep doing the things you were doing, or you can turn negative,” Mr. Spina said. “Then you can spiral down and let your work shift or postpone your wedding because you’re grieving. I wanted to take the opposite approach. My mom loved to live and loved love. I thought, ‘let’s keep living.’ What other choice do you have?”


I’m not a fan of the saying ‘everything happens for a reason.’ What reason on earth gave my son Jacob Ewing’s sarcoma and take him away from us five years ago? Are there things given to us in life to test our strength, to see how we cope when things get thrown at us, and it’s hard to think that our souls choose our bodies to live in before we are born. Why would I choose a soul with so much heartache from grief? Parents should go before their children.

My own immortality has been put to the test in early Dec 2020 when a regular 2 yearly mammogram picked up a tiny lump of 8mm in my left breast, right above my heart. They’ve assured me that they’ve got it early. Why would my soul choose this road for me to navigate along?

I wrote some words in a previous blog that I would fight for my life in the same fashion as Jacob did, with sheer determination and strength. I felt him near as I faced my lumpectomy – the first step in getting rid of the ‘C.’ I do wonder if the heartache and grief of losing Jacob played its hand in bringing this on. Even though I am continuing to evolve in my new life without him, managing to find joy amongst the sadness – the ingredients to how well a cake is cooked with love, it has a mix of everything. My ‘go to’ happy therapies including African drumming and photography.

I know that Jacob will be my own guardian angel keeping me safe. I know I have a wonderful cheer squad on earth and in Heaven. As I began to write this new blog I was another step closer to getting rid of it after just having had the dye put in to highlight the lymph node and was waiting in medical imaging to have a guide wire put in my breast.

Fast forward ahead 2 months to the day I had my lumpectomy and I have a lot to celebrate. The cancer hasn’t spread to my lymph nodes and it has been taken out with clear margins. In 2002 I was diagnosed with a melanoma spot on my back which was removed under a wonderful surgeon and specialist. Strangely enough the numbers in both the years of getting diagnosed with cancer are the same – 2002 and 2020. My breast surgeon studied under the specialist that operated on me for my melanoma and at the same hospital that Jacob had his major operation.

In February I had 20 days of radiation to make sure the disease had all gone. My one word mantra to guide me through this year is ‘Hope.’ Hope for a better year for all, hope for a better future and hope for a clear bill of health. The word ‘hope’ seemed fitting to follow on from last year’s word which was ‘bloom.’ Where flowers bloom, so does Hope.

Just last month I held on to the word ‘hope’ as I visited my surgeon for my first ultrasound to see how I was travelling….hope I would be ok, hope he wouldn’t find anything nasty, hope that Jacob was keeping an extra eye on his mum. The results were in. I didn’t need to see him again for another 6 months. All clear. Thanks for keeping a close eye on me Jacob. I am never alone, my soul guides me and my guardian angel protects me. That is teamwork at its best.

‘Of all ills that one endures, hope is a cheap and universal cure’ – Abraham Cowley

Dear Sadness

I understand you have to rear your ugly head every now and again to prove your place alongside the feeling of joy, but enough is enough. Since this threat on mankind in the form of a virus tears have been way more closer to the surface than my liking. I know it’s usually other triggers that bring you out in your glory. The power of a full moon plays with my negative emotions and I know when there’s one coming before looking into the dark sky. Songs and music play their part in giving you a part in the show. Looking at old photos and videos you are there trying to stifle any piece of happiness. God forbid if we ruin these prints with tears, no one will be able to rouse any emotions with an unrecognisable face that’s left. Sad to think of all the lives lost to this pandemic. Sad to think of families torn apart from spending birthdays, weddings and funerals together. In times of sadness we need human connection and touch, not just through technology and via the web. In this case yes you’ve won again. In the tears that I cry for my ‘forever 20’ year old son I am proud of those sad emotions that roll down my cheeks. Where there is great love there is great grief and I’m proud of those tears and I will own the tears that I cry for him. Sadness you will not rule me and the way I live. As I’ve said before you have your place in this big wide world just like the role you played in the movie ‘inside out’ alongside joy, fear, anger and disgust. Sometimes we have to know you Sadness, to know the true meaning of joy. When this pandemic eventually subsides and we all pick up where we’ve left off, I hope we continue our weird relationship, but preferably with me wearing the pants in the relationship. I have final say. We have to coexist. I’ll let you visit when I can feel my body getting ready to flip the lid and let off steam like a broken radiator in an old work truck. That’s your signal, your invitation to visit, but not to stay. I will work grief and sadness out if my body when I’m out taking photographs, and I will bring in joy and creativity. Life is too short for me to dwell on you sadness. Cheer up and live life to the fullest. That’s what Jacob would want me to do, to live my best life to honour him, to live out my life in ways that would make him proud. I know I’m going cry again, but this time they’ll be tears of joy not sadness. Let us leave behind sadness, regrets and painful moments and have a new start full of joy from now on in. Nothing is more beautiful than a real smile that has struggled through the tears.

What you’ve missed

Day 17: grief journaling

Today we want you to write a letter to your loved one telling them about a moment or moments they’ve missed.

Either choose to tell them about one single moment or tell them about everything they’ve missed. Talk to them as you would if you could give them a call.

• What would you want them to know?

• What have they missed?

• In what moments have you thought of them the most?

Dear Jacob,

Hiya beautiful boy x just calling to say ‘hi.’ Haven’t seen you for ages, when are you gonna come by again to see your old ma & pa. It’s been such a long time 4yrs, 6 months and 12days since I’ve heard your voice, kissed your forehead, ruffled your curly hair, laughed at your jokes and witnessed your creative talent in the form of your movies on your YouTube channels, washed your clothes, cooked your favourite meals, made you a cup of tea with 3 sugars, watched a good horror flick with you in the good room or listened to the words of a song you’d say I’d like because they’d have a positive message in the lyrics.

You’ve missed a lot since you’ve been away….but I’m sure you know what’s been going on as you watch over and protect us from afar. I guess you know that….

Toffee and Mungo crossed the rainbow bridge and are basking in your company and enjoying scratches curled up in your lap purring in cat Heaven. Two new cats have joined our family Mike and Morty. Mike is a rescue cat and they had given him another name – Tyson (as you have a cousin with the same name we called him Mike instead) Mike Tyson – do you get it? He’s not one bit of a fighter at all, he’s Mungo reincarnated, a scaredy-cat. Morty is your cousin Paul’s rescue cat. Him and his girlfriend couldn’t look after him anymore so we inherited him. He’s a pretty chilled out cat that has a permanent look on his face as if he’s stoned all the time. His nickname is naughty Morty. Ozzy and Axl are still fat (but don’t tell them that) and your dad will say ‘it’s their fur that makes them look fat.’ Chilli has moved out too because it got to the stage when Ben said ‘either the bird goes or I do’ and me being a good mum how could I choose between your brother and a bird. I do miss him though – Chilli that is, in case you thought I kicked Ben out. He’s gone to another loving family and they’re spoiling him rotten.

Your camera is still working it’s magic. I’m seeing the world through your eyes now – the lens of your camera. I snap away and SMILE ‘see miracles in life everyday.’ I have an ABN number now just like you to use in my upcoming adventure in photography in my free time. If you were here I’m sure you’d be happy to let me use your pride and joy and I’m sure you’d be still working your magic on an updated model, the top of the range equipment. You’d be able to teach me the tricks of the trade, instead of me watching YouTube tutorials over and over again.

You missed Rach and Adam’s engagement announcement. You’d be proud of the photos I took of them to put on their wedding website. I got a tad excited the other day when I saw Adam wearing your sloppy joe zippered jacket. You’d really like him. I know you didn’t get to know him well in the 3 months you got to meet him, he’s a lot like you and I think you’d be good mates with lots in common. Stephen and Michelle have parted ways and are sharing custody of the girls. It broke his heart and I don’t think he’s ever gotten over it yet. Amy has moved out and is renting in Wollongong, you’d have a comfy lounge to crash on if you didn’t want to come home after drinking with mates in the gong. She’s landed herself a really nice job with school holidays off, bought herself another brand new car another Yaris, yes her car the blue ‘thirsty merc’ is no more. Rach has a new car too, a golf. Your brother Ben is on to his 3rd car since we saw last saw you, and your little purple and white Toyota Corolla gathered spiders and tumble weeds as the season’s pass. It has gathered a bit more than rust since you last sat behind the wheel going through drive through at maccas with your mates. We sent it to the wreckers and it broke our hearts. The number plates are proudly nailed to the fence under the pergola. You missed your dad braking his elbow tripping on the bottom step and falling over on Christmas Eve trying to move a stuffed toy Agro from the pergola roof. We had just taken a family photo prior to this happening (another family photo taken without you).

You may be aware of all the new releases on the big screen. You missed the opening of ‘Truth’ the movie you worked on set in Sydney with Cate Blanchett, Robert Redford, Dennis Quaid and Topher Grace. We see your photo in several of the scenes. The imdb came up with a list of the best films of the last 5 years. I can’t recommend all of them as I haven’t seen them all. These are the one’s I think should get a mention as I think you’d like them too. Some are kids movies but hey you’re a big kid at heart –



Bohemian rhapsody

A dog’s purpose

The greatest showman


Hidden figures

Collateral beauty

Fantastic beast & where to find them




Remake of Jumanji – welcome to the jungle

Pete’s Dragon

Dirty grandpa


Pirates of the Caribbean – dead men tell no tales

Kong: skull island

Goodbye Christopher Robin


Storm boy

The lion king

A dog’s journey

A dog’s way home

Toy story 4

How to train your Dragon



The invisible man filmed in Gerringong & Kiama (filmed in our neighbourhood)

Remake of the grudge


Hansel & Gretel

A quiet place

The conjuring & Annabelle continuing saga

There are now 4 movies continuing the Insidious storyline, I’m sure you could come up with the 5th movie to share with the world, ‘cause I know that horror and suspense is your ‘go to’ genre to film.

I watched a good one today that you would love. It’s called ‘Yesterday’ showcasing all of the greatest hits of the Beatles. The best scene in the movie by far was when the main character Jack met an ageing John Lennon at age 78. In this parallel new world in the movie John was still alive and well. Any chance you could write a movie like this and I could play Jack meeting you at the age you are now? We can only dream and imagine like the musicians famous lyrics.

I’m glad you have more company with you now joining you this year – your grandad, my uncle Dave from England, your close friend Mikaila, a few of my nursing friends, Les my mum’s neighbour and Janet Trisha’s sister in law. I long to see you but I’m in no hurry to get to where you are. Those words didn’t come out right, you know how much I want to see you. I just want you right here with me now, just not there. I hope ‘time’ will tick away differently where you are, and it might seem like only yesterday we last caught up. I hope you welcome me with open arms and sweep me up in a tight embrace and make all of those hurts disappear. Till then – stay gold pony boy ❤️ love mum xxx

Your Toyota corolla
Mike – Morty – Axl – Ozzy
Family photo (missing you x)

Leaving a legacy

Day 11: grief journaling – Write about your loved one’s legacy.

A legacy is the story of some ones life, the things they did, places they went, goals they accomplished, their failures, and more. Legacy is something that a person leaves behind to be remembered. I guess you could call Jacob’s YouTube channel his legacy to all of us left to walk this earth without him with us and to future generations to come. By watching his creative and funny little movies we get a sense of who he was, his warped sense of humour, how clever he was with technology and witness his creative talent in action.

He created his legacy by using his beloved camera. The very camera I’m using now to capturing the world through his eyes (although I’ve never used it on the video mode and wouldn’t know how) bought second hand and still going strong. Over the years as his interest grew in cinematography he bought and made his own equipment to enhance his visual story telling. He’d gather his cousin and friends to unlock the script before bringing it to life with dialogue and action scenes. Horror, drama, suspense and humour seemed to be his ‘go to’ genre of movie to be produced. He learnt this talent in the course he did at TAFE and on the job training working on the set of the many productions being filmed with Jacob working his magic behind the camera.

Jacob had lots of movies on his list as his favourites, he didn’t just have one. These are worthy of a mention (not in any particular order) – the lord of the rings, the hobbit, interstellar, the secret life of Walter Mitty, Super 8 (just like he was as a kid wanting to make that no 1 blockbuster), King Kong (the one with Jack Black starring in it), Blended with Adam Sandler and Drew Barrymore, the music man (when he was young) but that feel good, easy going one to watch was The Producers with quite a worthy title given his career aspiration. I’m sure there are many more that I haven’t touched on that were on his long list of ‘what to watch.’ He loved lots of tv shows too which probably gave him ideas to use in his movies – supernatural, how I met your mother, two and a half men, the Simpson’s, and Big Bang theory.

We’d all do our bit to help him film, particularly when he made them at home. We held things up like lights, threw balls etc and even filled in as an extra or voice over. We knew he was busy when his laptop was open, the occasionally swear words would slip out as his computer froze right at a crucial moment he was editing. It was heartbreaking when he fried the hard drive of his laptop during his last creation. We still have several of those scenes saved and unfinished. It would have been a good one too with lots of suspense. A young man running for his life through the thick bush, tripping over tree roots lessoning the distance between the innocent victim and chaser (although you never saw them, you just knew they were closing in on them from the music and the look on the guys face as he was running). Water running through an abandoned dark tunnel under a road suddenly is streaked with a blood like substance. A scared girl in a locked car that won’t start in an isolated car park with a person dressed in dark clothing with a hoody coming closer to her side window holding up a weapon causing her to scream. In the next clip you see the other side of the story to the previous one, watching the person dressed in dark clothes and a hoodie running to the car only to be holding up a car jack as he comes asking for help with his broken down car, he wasn’t going to harm her at all, just asking for assistance.

Jacob’s love of making movies started young at around 10yrs. He’d make them in the back yard with a mate, mainly a zombie horror story with fake blood made from red paint and tomato sauce. I’m sure had he had more time on earth to pursue his career in cinematography he would have made himself a name in the industry. He’d make sure the credits spelt his name correctly, as he’d get a little bit upset to see that his contributions to his feature works hadn’t got it right…and just as the saying goes ‘I before E, except after C’ this was the same as his surname. He will be with us for a lifetime with his work on YouTube to tap into a bit of his creativity when we feel like it.

‘The goal isn’t to live forever but to create something that will’ and Jacob with his cousin and mates did just that – JDscreens and CobbyFilms. 

Jacob’s first take in cinematography (although he starred as the zombie) he directed and wrote the script….an occasional swear word can be heard, apologies. 

Jacob & his cousin Luke – film noir

Continuing bonds

Day Ten: – grief journaling

For today’s journaling prompt, we want you to write about the small, personal, everyday ways that you continue your bond with your loved one.

• What objects do you hold onto? 

• What rituals do you engage in? 

• What sayings do you repeat? 

• What traditions do you uphold? 

I have an old suitcase in my room that holds a few items of Jacob’s clothing. A couple of my favourite t-shirts of his with funny sayings written on the front. A nice sloppy joe kind of jacket with a zipper. His warm and fuzzy winter trackie dacks that became his most comfortable attire as it hid his skinny frame and a catheter. A couple of his good old faithful shoes that he bought in Hawaii (our last holiday as a family) that he tenderly walked in when he was using crutches and in a wheelchair. We had hoped they’d walk along a different path for our beautiful brown eyed boy. I love wearing his 2 beanies when the seasons change to keep my head warm. These kept the world from seeing him rock the bald look in the winter months. His Hawaiian shirts he bought for him and his mates to wear at was his last New Years celebration. One of those shirts is missing a sleeve, I cut it off to create a stitched up heart. A few brand new t-shirts he bought for his mates to wear as they watched WWE wrestling in Sydney. I have his beautiful straw hat he’d proudly wear and would look really shmick wearing it with his dark sunglasses. I have his wallet with his licence and cards in it still. His pirate patch he’d wear to relieve his double vision takes its place on his memorial shelf. Ohh there are so many other items I treasure.

I guess we do have rituals we engage in to keep his memory and spirit alive. My husband Pete has created ‘Jake’s bar,’ a special place to feel his presence and to have a toast to him as you ring his drink bell while you browse through family photos in a frame with Jacob pulling funny faces making us laugh. We write messages on his table with a permanent marker. We get out his life size stand out cardboard cut out at family celebrations to have him physically there with us and to take selfies with. We scatter a little bit of his ashes nearly every holiday destination we travel to over land and sea. We raise money for one of his favourite charities dreams2live4 and an awareness and research one to hopefully one day find a cure for sarcoma on his behalf. I’m using his camera so I’m seeing the world through his eyes the lens of his camera keeping us connected.

Jacob had 2 mottos as he neared the end of his life – ‘live each day as if it’s your last’ and ‘be thankful for everyday you’ve been blessed with.’ His dad quoted a line from one of Jacob’s favourite movies and these words became very powerful for Jacob to give him more fight that he needed – ‘stay gold pony boy’ from The secret life of Walter Mitty. The song by Ball Park Music ‘it’s nice to be alive’ was playing right up until he took his last breath and yes it truly is ‘nice to be alive.’

Disabled sailing gives out a memorial trophy each year with Jacob’s name on it to the most inspirational person of that year. Jacob will always be part of the movie ‘Truth’ with Cate Blanchett, Robert Redford, Dennis Quaid, Topher Grace and many others and when we watch the movie we pause it and say ‘there you are, found you’ when we see the photo of him and Cate in Mary Mapes office. Lennie shows the WinTv news segment we starred in showing Ben pushing Jacob on the beach with an amphibious wheelchair in his line of work that he does with physiotherapist etc to spread awareness of the great piece of equipment to be used with people with a disability to enjoy recreational times in the water. I will continue to feel him near me as I see a butterfly or dragonfly, see a rainbow, the stars I wish upon at night, a penny from Heaven, a feather, a song on the radio with messages in the lyrics, numbers, dreaming of him while I sleep and connections with him with the help of a psychic medium.

I loved him yesterday, I love him still, always have and always will x

Moving forward

Day 9 – grief journaling

For today’s prompt, complete the following sentences in your journal.

• As my grief changes, I am worried that….I will be seen as having gotten over losing Jacob. As my grief changes those emotions will still be intense as before just not as often.

• I hope to let go of the following aspects of my grief….the guilt that ‘I should have done more’ and the ‘what if’s’

• I hope to hold onto the following aspects of my grief….that I don’t feel ashamed of my grief, raw emotions and tears, I will proudly own them for when there’s great love there’s great grief. He was here, his name shall be mentioned and his life celebrated.

• Moving forward with my loved one means ….that I will look for pieces of him everyday as I continue to SMILE – see miracles in life everyday

These clever and wise words came from a wise man I only know as GSnow through an internet seatch. These words if they were mine (but they are not) could very well answer the first dot point in the writing exercise, he writes the explanation way better than my 2 sentences. But I felt this description warrants sharing to all those who grieve a loved one – “Alright, here goes. I’m old. What that means is that I’ve survived (so far) and a lot of people I’ve known and loved did not. I’ve lost friends, best friends, acquaintances, co-workers, grandparents, mom, relatives, teachers, mentors, students, neighbors, and a host of other folks. I have no children, and I can’t imagine the pain it must be to lose a child. But here’s my two cents.

I wish I could say you get used to people dying. I never did. I don’t want to. It tears a hole through me whenever somebody I love dies, no matter the circumstances. But I don’t want it to “not matter”. I don’t want it to be something that just passes.

My scars are a testament to the love and the relationship that I had for and with that person. And if the scar is deep, so was the love. So be it. Scars are a testament to life. Scars are a testament that I can love deeply and live deeply and be cut, or even gouged, and that I can heal and continue to live and continue to love. And the scar tissue is stronger than the original flesh ever was. Scars are a testament to life. Scars are only ugly to people who can’t see.

As for grief, you’ll find it comes in waves. When the ship is first wrecked, you’re drowning, with wreckage all around you. Everything floating around you reminds you of the beauty and the magnificence of the ship that was, and is no more. And all you can do is float. You find some piece of the wreckage and you hang on for a while. Maybe it’s some physical thing. Maybe it’s a happy memory or a photograph. Maybe it’s a person who is also floating. For a while, all you can do is float. Stay alive.

In the beginning, the waves are 100 feet tall and crash over you without mercy. They come 10 seconds apart and don’t even give you time to catch your breath. All you can do is hang on and float. After a while, maybe weeks, maybe months, you’ll find the waves are still 100 feet tall, but they come further apart. When they come, they still crash all over you and wipe you out. But in between, you can breathe, you can function. You never know what’s going to trigger the grief. It might be a song, a picture, a street intersection, the smell of a cup of coffee. It can be just about anything…and the wave comes crashing. But in between waves, there is life.

Somewhere down the line, and it’s different for everybody, you find that the waves are only 80 feet tall. Or 50 feet tall. And while they still come, they come further apart. You can see them coming. An anniversary, a birthday, or Christmas, or landing at O’Hare. You can see it coming, for the most part, and prepare yourself. And when it washes over you, you know that somehow you will, again, come out the other side. Soaking wet, sputtering, still hanging on to some tiny piece of the wreckage, but you’ll come out. Take it from an old guy. The waves never stop coming, and somehow you don’t really want them to. But you learn that you’ll survive them. And other waves will come. And you’ll survive them too. If you’re lucky, you’ll have lots of scars from lots of loves. And lots of shipwrecks.”

Dear Person Who Doesn’t Get My Grief

Day 6 – grief journaling

In this passage of writing I won’t be focusing on one person. I will be talking to a group of people. A beautiful bunch of young adults. These young adults would be Jacob’s friends. I miss seeing them, calling in and checking in on me as they walk through the house to the games room where they’d used to hang out watching movies or playing the Nintendo or ps4. Our house was (and still is) an open house. There is no reason for them to call in anymore because Jacob’s not there. Why come by our house anymore? I’d hope they’d still come by to say ‘hi,’ to fill me in on what’s happening in their life (I’m still interested in you, just as I was when I saw you regularly). It might bring a lump in my throat and I may have tears, but there will be smiles and laughter too as we remember good times.

I really do miss the company of my son’s friends who I don’t get to see anymore since my son’s passing. I do get to see them on Facebook as they post pieces of their lives. I’d like them to still call by and check in on me like they used to do. I’d love to see photos of Jacob to pop up on Facebook that I’ve never seen before. It would make my heart skip a beat. Maybe it’s still too raw for them. I just hope that they haven’t forgotten him 😢 I’d like to see the mention of Jacob’s name on their Facebook page if a memory pops up. I don’t like the feelings this stirs up – envy, anger and disappointment as I don’t do them well as it’s not in my nature. Grief sometimes has a dark side.

I saw a few of them not so long ago. It was at an occasion I’d rather not have had to reconnect with them, but it was nice to see them and hug them nevertheless. We all caught up at a beautiful young girls celebration of life, a young mum Mikaila at the age of 24 losing her life to a rare sarcoma just like the one that took Jacob from us. How is it possible 2 friends from the same group at high school get a rare cancer and both fight for their lives at such a young age? The hugs I got on this day from the young adults friends of Jacob were genuine, they held on to help sooth the heartache. Hugs were easier to dish out whereas words and conversations were a lot harder. Awkward silences made us feel uncomfortable as you fumbled to find a topic to talk about to make the words flow like the lyrics of a familiar song. I took a step back and watched them converse with each other and enjoyed just being in their presence. I chatted with their parents who attended the celebration too to hear more about what was happening in their busy lives.

I hope in time I get to see those new photos of Jacob I’ve never seen before and hear more stories I’ve never heard before as we catch up again at different occasions like an engagement, a wedding, the birth or Christening of babies. I really like that old saying that ‘happiness is when you realise your children have turned out to be good people’ and that includes their friends too.

Jacob and Mikaila have good friends, they’re like stars, you don’t always see them but you know they are there.

Jacob & Mikaila at their year 10 formal
Friends at Mikaila’s celebration of life
Friends at Mikaila’s celebration of life

I’ve always loved this song by Neil Young about friendships & love – Philadelphia https://youtu.be/qCr0KHrZAOc

A letter to my boy

Day 7 – grief journaling….what would your loved one want?

If I could ask you what you would want for me and my future, I think you would say to me ‘live each day as if it’s your last and be thankful for every day you’ve been blessed with.’ I’ve taken on your motto for life. I put one foot in front of the other everyday and I will live out the rest of my life in honour of you and live it in ways that would make you proud. I know you’d want to still be here with us all if you could and what we wouldn’t do for this to be true. We have to believe in our hearts that you are still with us in more ways than one. I knew it was you when the blinds suddenly went up in the family room, when I felt my hair being pulled, the huge dragonfly at Mikaila’s celebration of life and the feathers that appear by my feet. I love how we still have that connection as mother and son, but I will always want more.

I can’t wait for you to see your sister Rach get married to Adam. I know you would have become great friends with him as you are so much alike. We’ll have a new life size stand up cardboard cutout of you standing there proudly in your suit for us to have selfies next to. I know you’ll be there when Amy and Ben start looking at houses together, you be like a third wheel to get them all uptight, pushing their buttons to get a reaction while you look really proud thinking ‘I did this’ just like you did with your siblings in the living years. You’d probably have your own house by now with all the movies you would have made helping you to bring in the cash, so you might have given them helpful advice in managing the realestate and getting a bargain. I know you are helping me choose my career path and guiding me one the correct path in life. My beautiful guardian angel. I know you’ll look after your dad and help him with his acceptance of the loss and grief he feels, as you know he doesn’t handle his emotional side very well and is often not a great communicator about the difficult things in life. You will watch over your dad and me together, because you got to see us at our best and look what we can achieve as a team.

I went for a walk today with my mum (your nanna) along the edge of the lake. I saw 2 white feathers floating in the weed near the jetty. One for mum & one for me, from you & grandad. Please come and visit me in my dreams tonight. I hope you are having a drink with your grandad for Les as we toast him here on earth by singing ‘knocking on Heaven’s door.’ It was early in the morning to have a glass of bubbles but like the saying goes ‘it’s 5 o’clock somewhere’ – cheers Les, a life taken way too early. You might send me a message on Saturday at the pop up zoom psychic show with Allan. Till then ‘stay gold pony boy’ love you 😘 love mum x