Special Needs: A life unimaginable without Zopi
IN 2017 ZOPI nearly died. “It’s weird that it shook us so badly,” says mom Niki (43), “because you’re just so used to going in and out of hospital. But you know you come out. And this time we nearly didn’t come out.”
Coming this close to losing your child may be unthinkable – but then, the past four to five years have been pretty unimaginable for this Cape Town family.
After being born at 26 weeks, both Zopoula (“Little Zopi” in Greek) and her twin brother Stelio suffered grade 4 brain haemorraghes – the most serious kind.
Stelio passed away after a few days, and Zopi was left severely disabled with spastic quadriplegic cerebral palsy, epilepsy, cortical visual impairment, and a global developmental delay. This means she can’t yet sit up on her own, she can’t walk, she can’t talk, and she can’t eat orally.
And nobody knows whether she can see. “Her optic nerve was damaged,” explains Niki. “We still don’t know if the connection’s going to the brain.”
By now, she’s already had three neurosurgeries, two laser eye operations, two procedures to fit feeding tubes in her stomach, as well as epileptic seizures, septicemia, and several chest infections – including the one that nearly cost her her life last year. “Every cold or sniffle could land her in hospital at the drop of a hat,” says Niki, who, to top it all, herself battled cancer in 2016.
UPSIDE DOWN
Caring for a little one who is this disabed and medically fragile has turned life upside down for Niki and her husband Toni (36). “It’s not just the financial depletion,” she explains, although the costs of medical care, therapy and specialised equipment have certainly been astronomical. “It’s also energy. It’s
NO MATTER HOW UNTHINKABLE AND OVERWHELMING LIFE WITH A SPECIAL NEEDS CHILD BECOMES, NIKI WOULDN’T HAVE IT ANY OTHER WAY
emotion. It’s family.”
One of the hardest things Niki had to learn was to open herself up to the generosity of friends, family and even strangers. “It’s admitting that you’re not in control!” But without the financial, emotional and spiritual support, she says, it would have been impossible to cope. “It’s showed me that community is there; people want to help. You just need to show them where.” BABY STEPS As much as life has been turned on its head, Niki is far more keen to talk about their blessings. “We’ve been through hard times, and I haven’t always thought this, but we are blessed to have her.”
Last year, when Zopi was fighting for her life, was a turning point. “It felt like I was putting her on the altar and saying, ‘God, here she is. There’s nothing more I can do.’” She also spoke to Zopi: “I told her, Zopoula, if you’re tired and you want to go, you can go. It was the first time that I ever had to do that.” “And she chose to stay!” laughs Niki. Since then, Zopi has done more than survive: she’s shown astonishing progress. She’s starting to sit up and even comes up to reach for her toys and toes. And she’s already taken the first, tiny steps towards feeding herself. Because of years of airway suctioning and the resulting scar tissue in her throat, Zopi would gag the moment something touches her lips. “Now she’s putting all these things in her mouth. And that’s just phenomenal!” boasts Niki.
Next, they want to focus on communication. “She’s frustrated; she wants to communicate with us. And we can’t do Sign language, because we’re not even sure if she sees.” But she does understand what they say. “She loves music. So I’ll say, ‘Let’s go put the music on,’ and she’ll pull herself up to dance!” IMAGINING THE FUTURE Niki is looking forward to the next chapter in their lives. For one, she feels they’ve matured in their walk as special needs parents.
“For the first two years, you just try everything,” she says. “You bankrupt yourself, you rush out and get everything. If that’s what she needed, that’s what we’d get.” Now they’ve learnt to be more circumspect in the therapies they choose.
One therapy method they do feel very excited about, is the universal exercise unit, also known as the Therasuit. Last year, Zopi was able to work with a therapist in Greece, and now they dream of raising enough money to bring him to South Africa to work with other families in need, and to train local physiotherapists in the technique.
On a personal level, Niki wants to go back to work. “It’s time to get out!” laughs Niki, who left her job as GM at a high-end fashion company to look after Zopi. “I need the stimulation.”
Whatever the future brings, and no matter how unthinkable and overwhelming life with a special needs child becomes, Niki wouldn’t have it any other way. “It’s hard. It’s really hard,” she admits. “I’m not being superficial about it. But I can’t imagine life without her.” YB