for better or worse
Three couples share how they made it out stronger than ever
Gabi Lowe, 54, is a life coach at her own practice called The Coaching Nest. Her husband, Stuart, 56, runs his own consumer insights consultancy. They live in Claremont with their daughter Kristi, 21. Their daughter Jenna, then 20, passed away in 2015 after battling a degenerative lung condition. Stuart, Jenna, Kristi and I were like any other family. Stuart and I both had full-time jobs: he was the managing director of Ramsay Media and I had my own marketing business. In-between work responsibilities we did the school runs, made sure that the girls got to their extramurals on time, and helped with homework. We never expected our lives to be so terribly turned upside down. THE DIA GNOSIS
Our eldest daughter Jenna had been a happy, healthy teenager until about grade 10, when she started showing signs of breathlessness. Jenna was a dedicated student, so we just thought she was dealing with a bit of anxiety from the pressure of school life. But her symptoms got worse and in 2011, she was misdiagnosed with asthma.
‘Our daughter’s death taught us to live a life of value’
Jenna’s condition continued to deteriorate and she was hospitalised for the first time at the start of her grade 11 year, in 2012. After a battery of medical tests, we finally had a definitive diagnosis: Jenna had a degenerative lung disease that’s called pulmonary arterial hypertension ( PAH), and she would eventually need a double lung transplant.
PAH is so rare that our medical aid didn’t even have it as a registered condition, which meant that some of her medication had to be brought in from overseas and was incredibly expensive.
Stuart and I knew that we were in for a rough ride but we remained a strong team throughout – and we made every decision together. Like when Stuart left his job to set up his own business so that he could be closer to home, and when I started working fewer hours, and eventually closed my marketing business down in 2014 – these were life changes we agreed on together.
It was a really tense period as we tried to figure out how we were going to pay Jenna’s medical bills, but work finally started to trickle in for Stuart’s business.
When I wasn’t caring for Jen, I was on the phone or meeting with people to raise money for Jenna’s treatments, and in 2012 we established the Jenna Lowe Trust to raise awareness of PAH, and the shortage of organ donors in South Africa – only 0,3% of the population are organ donors. I also started building up a global network of specialists and medical suppliers who could help in any way – in some cases they even donated their time or medication to our cause.
By 2014, Jenna was bedridden and had to be on oxygen 24/7. Still determined to make a difference, she started a social media campaign called # GetMeTo21 to encourage people to sign up as organ donors. Within just three months, an incredible 20 000 new donors had joined the list. But despite the success of the campaign, we still watched as our little girl got weaker and weaker.
FINALLY SOME GOOD NEWS
It was December 2014 when we finally got the call to say they’d found an organ match for Jenna. We packed up our lives in a matter of hours to make it to the hospital in Joburg on time and Jenna made it through a gruelling eight-hour surgery, but she spent the next six months in ICU.
We knew we’d be in Joburg for a while so we rented a house and enrolled Kristi in a local school. The months that followed were a blur of beeping monitors, doctors and nurses. Stuart and I took shifts: one sleeping at home while the other stayed at the hospital before swapping places. Despite all the fundraising, the viral social media campaign, the sleepless nights spent at her bedside and the courageous fight she put up, Jenna passed away on 8 June 2015.
A NEW NORMAL
Before we returned to Cape Town, we went on a family road trip and visited all of Jenna’s favourite spots to say our final farewells.
At the end of our trip, we had to return to everyday life and we had to focus on just putting one foot in front of the other.
Those months that Jenna spent in ICU took its toll on all of us. Kristi moved schools three times while in Joburg and, following the loss of her sister, endured crippling depression. Stuart came back to Cape Town to find that the partners in his business had left. We knew that we needed family counselling; we attended group therapy sessions together, private one- on- one appointments, and guided meditation. It was really important for all of us to understand that we’d respond to Jenna’s death in different ways, which ultimately helped us to be more patient with each other.
FOR BETTER OR WORSE There’s no doubt that my relationship with Stuart has changed and intimacy has taken on a whole new meaning; it’s no longer just about the physical but the emotional too. Jenna made us realise that we need to take advantage of every moment that we have together, and now we aren’t scared to tell each other what we’re thinking. Sometimes it can be harsh, but we know we have no time for beating around the bush. I knew I couldn’t return to running my marketing business and through my journey of grief I’ve found a new purpose. I studied to become a life coach and have now developed workshops on emotional resilience. Stuart has been able to rebuild his business, and Kristi is studying a bachelor of social sciences.
Each year, on the anniversary of Jenna’s death, I wake up early to light scented candles and place pictures of Jenna, along with rose petals and pebbles, on our dining-room table. None of us go to work that day – together with our family and friends, we remember Jenna and the lessons she taught us: to always be kind and to live a life of value.
Group therapy sessions, as well as guided meditation, helped us heal
✱ For more information, visit jennalowe.org