Cherished Anointing

Boitumelo Maswabi
SHARING KISSES: Fihliwe and Tlotso

At the age of 34, Mahalapye-born Fihliwe Lynette Lekobane happily headed out to Bokamoso Private Hospital to deliver her last-born child, Tlotso, following 36 incident-free weeks of excellent antenatal care courtesy of her reputable obstetrician and gynaecologist.

With her loving husband, Christopher, by her side, Fihliwe would soon learn that baby number 3 was not special because she’d be the only child born in wedlock and in a private facility, unlike her older siblings, the expectant mum was blissfully unaware there was yet another reason their unborn baby was different.

Voice Woman sits with the welcoming mother of the special needs child, an English Language teacher at Oodi Secondary School who is also fully committed to raising awareness of Down syndrome (DS) through the Down Syndrome Association of Botswana.

Founded by parents of children with Down syndrome in 1999, she joined the association 6 years ago and serves as Secretary.

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World Down Syndrome day is commemorated annually on 21st March.

The doting mum was still groggy from anesthesia when she realized her baby had been taken away from her.

Confused by her husband of 18 years’ rather joyless countenance when she asked to see her bundle of joy, Fihliwe began to panic and would bombard him with questions.

“He walked into the room crestfallen. I mean, we’d just had a baby, therefore I expected my husband to be cheery, instead, he said there was a problem; the baby had Down syndrome. ‘What is it? Has she died? Is she limbless?’” she recalls somberly, and continues, “My husband and I knew very little of DS at the time, and so we were crushed.

I agree with the statement that ‘if it doesn’t affect you, it doesn’t exist’.

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I was at a loss because, just as the previous two, it was a perfectly healthy pregnancy. I never missed any antenatal check-ups.

Nothing untoward was ever detected, and as far as we were concerned, it was going to be a normal birth,” Fihliwe explains, and says that even the experienced Russian specialist, Dr Ivanov, had not picked any abnormalities either, save for the delayed descent in second stage that she was accustomed to; hence she always delivered by cesarean section.

As she continues to recount the harrowing details of the time the sad news of her newborn baby’s condition was broken to her, I notice her eyes well up with tears at the distressing memory.

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“Because I was ignorant of the condition, I was anxious and begged to see my baby. I grew agitated, almost violently so, as worry began to can set in. I sat up and asked my husband to wheel me to the nursery. I was about to stand up when the doctor hurried to see my baby. When I was finally reunited with her, I breathed a sigh of relief, all I saw was a healthy and beautiful baby. So, I turned to the doctor and asked what the problem was because the baby looked normal to me,” she says.

After being left to bond with her baby, Fihliwe felt whatever condition her daughter had, she was fine, and as long she looked fine to her.

It was not until the next day that they got to fully appreciate the diagnosis and were sent for counselling.

As she narrates this, the 6-year-old, who looks a little under 5, interrupts us, and her brother, Reagile, entices her away with his phone.

They disappear into the passage leading to the bedroom.

I marvel at how the 11-year-old lad displays a calm maturity in the way he convinces his younger sister to join him.

Tlotso’s older sister, Wame, meanwhile, is busy with homework.

“My older kids are very helpful,” she says, and quickly returns to our chat.

“A pediatrician, Dr Mabav, took us through the condition and we had the opportunity to ask questions; what to expect and the varying degrees of developmental disabilities associated with DS.

He educated us on key challenges of DS like delayed milestones, and the possible heart problems – some are born with holes in their hearts (Tlotso had 3 that kept closing) and require corrective surgery, and might present with chest problems.

They have underdeveloped muscles at infancy, a smaller jaw – their inadequate mouth capacity, hence they stick out their tongue a lot, which makes feeding them rather difficult.

As a result, Tlotso used to retch a lot. She also has smaller eyes and nose, thus squints, and is at a higher risk for infection.

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The doctor also informed us that she could develop cataracts, jaundice, etc. But there are solutions, and the most important thing is to ensure the kids are well taken care of.”

Regarding other challenges they have faced as a family, especially the toll it might take on her as Tlotso’s primary caregiver, Fihliwe says, “Challenges include cerebral and physical/mobility issues.

By God’s grace, my daughter is doing relatively well.

We decided to enroll her into a regular kindergarten for the very reason that we wanted her speech to develop.

If she spent her day with other DS children, she wouldn’t learn as quickly as when she’s with normal kids, right?

It took her almost 3 years to begin talking.

In terms of the physiological milestones, that took a toll on me.

She struggled to walk for a long time, which was heartbreaking.

As an infant, her spine wasn’t strong enough – that jelly stage of a wobbly head and floppy limbs – but I took her for physiotherapy, which helped with mobility and hand to eye coordination,” she says, and adds that it was quite traumatic, something I find hard to picture, as Tlotso is now a bubbly, hyper and relatively smart young girl who keeps chatting me up every chance she gets.

Cherished Anointing
TIGHT KNIT: Tlotso with her sister, Wame, (r) and friends

Medical concerns mean financial challenges, Fihliwe states, but is quick to give all glory to the Almighty God.

“My daughter has been a blessing. We are anointed – ‘Tlotso’ – that’s what her name means. What the enemy meant for evil, God turned for good. People talk a lot.

In the earlier days, I cried a lot because the very thought of explaining DS to people was agonizing. Some would cry with me.

By the time I returned to work, I had lost so much weight. I had no desire to return to work actually. People would whisper, ‘Gate o tshotse mopakwana’. Initially, I asked God, why me? … this is the only child born in wedlock!

I blamed myself, wondering what I did wrong. I suffered anticipatory anxiety, dreading the future: what if I die before her, who’s going to take care of her?

But I’m married to a man of faith. He asked me: ‘Who did you want God to give this child to?

Do you know why she came to us? Because God knew we’d manage.’ We are not moneyed, but we are comfortable, can provide for our children. God knew we’d be able to afford medical bills, as well as a decent home for her,” she says, lighting up as she gives glory back to her Maker, and advises newer parents of DS kids to accept their children and love them: “If you do not hasten to accept your child, who will?” she asks rhetorically, and adds that she feels her little girl has opened the windows of heaven as she and her husband have since seen tremendous blessings.

In 2018, Fihliwe flew to the United Kingdom for a World Down Syndrome Day conference. “My husband decided going away for a bit would be good for me, so I travelled there to represent my daughter and Botswana.

Upon my return, I felt I had a better understanding of DS. I learnt that we could nurture their talents; these kids are very musical. There was a child at the conference who played the piano, one was a DJ, another a supermodel.

Tlotso is usually the first to sense when I’m sad and she loves music,” she says, tears welling up in her eyes again, and gushes that she also adores her ‘anointing’s’ smile, and the fact that she’s such a fighter.

At three years, Tlotso underwent surgery for a duodenal obstruction (when the first part of the small intestine – the duodenum – is blocked), with further complications, which led to a 10-day stay in ICU.

“It was unbearable for the entire family as we were yet to come to terms with her condition. Medical expenses also shot through the roof; we were paying 10k a day for ICU and the team of specialist that attended her,” she explains and suddenly dissolves into more floods of tears, concluding, “After all these experiences, one develops thick skin.

We decided as a family to fight the social stigma around Down’s syndrome; Batswana must try and accept our kids. Ask, don’t assume: educate yourself and stop with the negative talk like ‘o tloletswe diphatjana’!”

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