Special needs: A good and perfect gift
Perfection often turns out different from what we expect – as Samantha and Keegan Thomas from Durban found out when their little girl was diagnosed with Down syndrome, writes Carin Bevan
WHEN SAMANTHA THOMAS (34) found out she was expecting a girl, she had a lot of fun decorating the nursery. “I just went pink crazy!” she laughs – after all, she was already mom to two boys. Above her little girl’s crib, she put up a Bible verse she’d chosen especially for her daughter: “Every good and perfect gift is from above.”
But when Kacey was born three weeks later, her parents immediately knew that something was wrong. A PRINCESS WITH A DIFFERENCE “There was complete silence in the delivery room,” recalls Samantha. She hadn’t had the prenatal screenings for Down syndrome, so Kacey’s tell-tale almond-shaped eyes were a complete shock – not just to Samantha and her husband Keegan (33), but to the doctors as well.
But with few of the other typical signs of Down syndrome – such as low muscle tone, small, low-set ears, a single fold on the palm and a large gap between the first and second toes – doctors weren’t 100% sure.
The paediatrician even asked them if they have Asian blood, because, he said, “she looks like a beautiful Mongolian princess”.
“He kept saying he was concerned about her eyes,” says Samantha. And yet it took a few weeks, and their own insistence, before they were finally referred for genetic tests. “We couldn’t go with a ‘concern’, we needed proper proof that she is or she isn’t.”
OVERWHELMING “It was all a bit overwhelming, because the doctor just sat there writing referrals. That’s all he was doing – all these big envelopes!” They had to go for genetic tests to confirm Down syndrome, as well as check for common conditions associated with the syndrome such as vision, hearing and heart problems.
At last, they got their confirmation. Kacey was officially diagnosed with trisomy 21, the most common cause of Down syndrome. What’s more, she had two holes in her heart: one tiny but dangerous hole called a VSD (ventricular septal defect), as well as a larger AVSD (atrioventricular septal defect).
For Samantha, the events of 2016 are still very raw. “They call me waterfall!” she laughs and cries at the same time. And yet, a year and a half later, life with Down syndrome has turned out vastly different from what she’d expected. “It was a bit overwhelming in the beginning, but I think now that it’s a year later, it’s actually not that bad.”
In fact, in many ways Kacey sounds like a typical toddler. She likes to play with her ball and teddy, loves her bike, copies everything her brother does, and is picking up all sorts of cute mannerisms. “When I say ‘No’, she lifts her finger and says, ‘No, no no!’” And of course, like any toddler, she gets very upset when things don’t go her way.
She’s also a very determined little girl. With help from her parents, physio, occupational and speech therapists, Kacey is meeting a lot of her milestones, including sitting, standing and learning to walk. “She really perserveres!” boasts Samantha.
What’s more, at her last check-up, the cardiologist found no sign of the VSD — it seems that this dangerous hole in her heart has closed on its own.
NO LIMITS
At this young age, it’s still too early to tell exactly what impact her Down syndrome will have on Kacey’s future life and abilities. But Samantha has learned to take one day at a time, and to enjoy and celebrate each milestone as and when it comes.
If she has one wish for her daughter, it’s that she can “do her best; be her best. And be treated like everyone else.” This is particularly hard. “It really frustrates me when people say, ‘Oh, maybe she’ll swim, maybe she’ll do this, maybe she’ll do that,’” says Samantha.
“Sometimes I get so angry – not maybe, she will! Don’t put limits on her!”
Despite the shock of those first moments, and despite all the sacrifices, the health problems and the tears and worries of the past year and a half, Samantha has no regrets.
“She really is a light in our lives. We’re really, really blessed to have her. She’s a good and perfect gift indeed!” YB