for bet­ter or worse

Three cou­ples share how they made it out stronger than ever

Essentials (South Africa) - - CONTENTS -

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.

FIND­ING TREAT­MENT

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

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