Mum reveals how she has discovered purpose after death of her daughter
A Queensland mum has shared an inspirational story of her daughter’s life, the intense grief of watching her die, and how she has rediscovered purpose and hope through her pain. VIDEO TRIBUTES
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The agony and aftermath of watching her beautiful daughter Kari-Lee die was nothing for which Rhyl Venning could prepare.
“For months my chest ached,’’ the Sunshine Coast mother says.
“A broken heart is very real. I felt sick all the time, like someone had kicked me hard in the stomach. I couldn’t eat and lost 23kg.’’
She barely slept. “Every time I closed my eyes I saw Kari-Lee struggling to breathe, Kari-Lee in pain and suffering.”
“I couldn’t be with people. I cried every single day for two years. I didn’t know it was physically possible to cry that much.”
In her 25 years, Kari-Lee lived an incredible life, travelled to 38 countries, found love and married Tom Birrell in December 2013. The talented dancer, who enjoyed the beach and all things tropical, particularly loved Brazil, fulfilling a dream to dance in the Rio Carnival.
“Life may not be the party we hoped for, but while we are here we should dance” was one of her favourite sentiments.
A young woman who lit up the room with her positivity, Kari remained cheerful, never letting cystic fibrosis, a disorder that damages the lungs and digestive system, define her.
Despite feeding tubes, central lines, surgery to remove an infected lung and a brutal regimen of antibiotics, which caused nausea, backache and restlessness, she never complained.
Her humour remained until the end. Slipping in and out of consciousness, Kari had a moment of complete clarity as she told her husband she loved him, thanking him for “sticking by me”.
She thanked her mum, for all she had done, and then spoke to her dad, thanking him for the many special memories he had created. Kari then spoke to her adopted sister Tiana, and thanked everyone she knew who was in the room with her.
And then, in a flash of humour straight out of the movie Anchorman, Kari quipped: “Well, that escalated quickly.”
Kari died in 2014 with more than 1000 people attending her celebration of life before a Kombi farewell.
It’s a life that has been celebrated in Sunlight on the Ocean, a raw, painful but uplifting book written by Venning over five years in the hope of ensuring Kari-Lee is never forgotten, while helping others dealing with such loss.
Venning, 65, and her husband Peter, 66, always knew Kari-Lee’s life could be shorter, after her cystic fibrosis diagnosis at six weeks old.
But it did not make the brutal last two months of their daughter’s life easier, especially after the initial hope given by a double lung transplant.
“Absolutely nothing can prepare you for your child dying. Some people have said to us that it must have been easier for us compared to someone whose child died suddenly and unexpectedly. Both situations are horrific.”
Venning is grateful the awareness of life’s fragility made her family treasure their time together.
“I’m deeply thankful that I was able to say the things I wanted to Kari before she left us,” she says.
“But I also had to watch her live with extra challenges for the whole of her life and then suffer terribly in those last two horrendous months.”
“I have friends who were wonderfully supportive after Kari died, but when their own child died several years later, they acknowledged that it was so much worse than what they had imagined.
‘It’s just impossible to imagine what it’s like to know you will never be able to see your child again, to hug them, to touch them, to hear their laugh, to gaze at their face, to share a thought, a joke, a simple cup of tea.”
“Initially, all I wanted to do was die and be with Kari-Lee. Despite knowing I needed to stay and not cause further grief to other family members who were also grieving Kari-Lee, the pull towards joining her was strong.”
As a Christian, Venning admits Kari-Lee’s death rocked her faith, particularly after prayers from people across Australia and around the world were not answered in the way she wanted.
“For the first few months I didn’t really want anything to do with the God who could have healed Kari and didn’t,” she says.
“What eventually helped me were books. Firstly reading stories from other Christian parents who had survived the loss of their child.
But the most impactful was a book by American author Randy Alcorn, titled Heaven.
“He studied the topic for over 25 years and the book is over 500 pages long,” Venning says. “It’s not light reading, but I just devoured it, reading day and night. It made all the difference.
“Truly understanding heaven, which I didn’t really – in spite of being a Christian since I was nine – changed everything.
“Kari-Lee is no longer suffering. She truly is in a far, far better place – although that isn’t recommended as a pat answer.
“I will see her again and have way more time with her than I had on earth.
“She is more in my future than in my past.
“My worst day was her best day.
“None of that stops me missing her; deeply, painfully, longing and yearning for her. But it gives me the strength and courage to keep going.”
Kari-Lee was a “miracle” daughter for the Nambour woman,after years of infertility and medical intervention.
The opening of her book tells of her intense desire to have children, and the great joy that Kari-Lee brought the former occupational therapist and nanny.
Much of the first half of the book celebrates Kari’s life, while documenting the health battles she and her parents faced.
“It took me five years to write, because it wasn’t something I could just sit and write,’’ Venning says.
“I needed time, space, prayer, reflection and then more of the same. Over and over and over.
“The flip side is that I felt almost compelled to write it, that I was meant to write this book.
“While a big part of my motivation was to never let Kari be forgotten and to share her story far and wide, I also wanted to be a light to those following me on the path of child loss.
“Reading stories of how other parents actually survived was a great help to me. I hope to be that help for someone else.”
Venning is honest when asked to share the keys to regaining joy and purpose in her life.
“One thing I will say is that there is rarely, if ever, unadulterated joy in my life any more,” she says.
“Even the most joyous moment, like the birth of my precious granddaughter Kari Florence, has a shadow cast over it by the continued absence of Kari-Lee.”
But Venning says that understanding heaven is what helped her. “Once I had decided that I was here on earth until God called me home, I also decided I might as well make the most of it and try to make my life count for good as much as I could manage.
“I looked for ways to make a positive difference for other people.’
Venning is a Make-A-Wish volunteer and a blood and plasma donor.
She facilitates a support group for bereaved mothers through While We’re Waiting, packs gift shoeboxes for Operation Christmas Child (OCC), is a puppy carer for Seeing Eye Dogs, has volunteered at The Prince Charles Hospital strawberry sundae stall at the Ekka and became a peer mentor for bereaved parents through the Ladybird Care Foundation.
“Most of those are connected in some way to Kari-Lee,” Venning says.
“She had blood transfusions. She had a wonderful trip through Make-A-Wish. We ‘inherited’ her labrador puppy when she died.
“She was a patient at Prince Charles. She always loved filling a shoebox for OCC.
“We used to fill four boxes each year – one for each family member. Now I fill the number of the age Kari-Lee would be if she was still here. So this year it’s 35.
“It’s been a slow process, but I’d say that as I started channelling my love for Kari into doing good for others, gradually joy crept in.
“Making a difference in the world gives my love for Kari somewhere to go. It also helps to keep my mind focused on heaven.’’
“One of the greatest lessons Kari taught me and so many others was to really live life.
“Mahatma Gandhi said ‘Live as if you will die tomorrow’.
“Kari-Lee squeezed more life into her 25 years than most people do in a ‘normal’ lifetime.
“She travelled to 38 countries and lived in Italy for eight months. She finished a diploma and a degree and had started another degree.
“She worked full time at several different jobs, including as a photographer. She danced and swam and was a surf lifesaver. She was studying to be a paramedic. She fell in love and was married.
“She didn’t let cystic fibrosis hold her back. She didn’t feel sorry for herself or look for special treatment from others. One of her favourite sayings was ‘no regrets’.
“She spread joy and happiness wherever she went. She didn’t waste her life. What a legacy to leave.”
While Venning is no expert on grief, she says people need to give themselves permission to grieve. “It’s important to allow yourself to feel all of the emotions, to wrestle with all of the hard questions, to grapple with what has happened. Don’t be rushed or made to feel guilty.
“Don’t stuff your feelings down and pretend everything is okay. At the same time, don’t get stuck in your grief or wallow in self pity.
As a Christian, she believes in the value of “talking” to God even amid fear and anger as her faith teaches her that “only He can understand all the answers and ultimately our hope is in him”. “We may never understand the ‘why’, but we need to trust the ‘who’. Not easy, I know,” she admits.
Helping others has also been a big key.
“There is so much suffering in this world,” Venning says. “If we can take our eyes off our own pain and problems, we see so many places where we can make a positive difference. And research shows that it’s one of the ways to make yourself feel better, even if you don’t want to do it for altruistic reasons.
“Another thing I suggest is to find ‘your people’. Connecting with other bereaved parents has enabled me to see that what I’m thinking and feeling is ‘normal’ for our abnormal situation. We ‘get’ each other.
“Grief and loss is so isolating, so find others who can walk alongside you with understanding and compassion.”
In the end, Kari-Lee’s final post on Facebook, four hours before she died, is a lesson for all of us: “I just want to say love all people, respect others and be grateful for the little things in life. Peace out.”
Sunlight on the Ocean by Rhyl Venning is available online from Koorong or via amazon.com.au for print and digital editions.
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Originally published as Mum reveals how she has discovered purpose after death of her daughter
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