A FUN ROOM LITTLE GUY

MARSEL ROOTHMAN (www.marselroothman.com/blog/) AND NANDI DLEPU (for www.johomoms.co.za) FOR A FUN LOVING E rnie and Yolandi North wanted to create a fun, unique room for their son Oliver while Yolandi was still pregnant. It was important for the space to

(like the blue and white curtains) that would grow up with him.”

Although it wasn’t planned that way, almost the entire nursery is made up of handmade or upcycled items. The compactum and cot had been in Yolandi’s family for the past 40 years and with a bit of paint and TLC, turned out to be as good as new. The collection of soft toys are a combination of stuffed animals from dad’s childhood and gifts from friends and family.

The inspiration for the room came from a little baby quilt that the couple bought at Ikea on a trip abroad – years before a baby was even on the cards. The quilt had little animals and colourful shapes, which was the inspiration for the bunting, the animals and the rest of the festive décor.

“I was also totally in love with the idea of a mix and match alphabet and pinned many similar ideas on Pinterest. But I was told not to work on the décor of the room before I had my baby shower. It was rather hard not to because the shower was a surprise and the suspense was killing me! It paid off though, as many of the very special décor items were gifts. I received the bunting, handmade mobile and alphabet letters (made by each guest at the shower to represent each person’s name or surname),” says Yolandi.

the usual way. Other so-called midline conditions (where the body fails to sew itself up along the seam in the middle of our bodies) are cleft lip and palate. Depending on the exact site of their lesion, people with the condition usually have some paralysis of the lower limbs and feet, and also struggle with their kidneys, bladders and bowels, and are often incontinent. Others still also have hydrocephalus – a damming up of cerebrospinal fluid in the brain, which must constantly be drained via a shunt in the brain.

Because Sean is a urologist – a doctor who specialises in kidneys and bladders – he knew exactly what he was looking at in his newborn son. Yes, the Irony Fairy sprinkled her magic dust on us liberally that day.

Next followed a round of X-rays, MRI scans, and consultations with specialists, as the diagnosis was confirmed and the extent of the damage estimated. Richie underwent an operation when he was seven months old at Red Cross Children’s Hospital in Cape Town to remove the lipoma (a fatty growth) that was trapping and stretching his spinal cord. He also became quite ill from hospital-acquired infections, as well as from the bladder infections that are common for his condition. He even developed scabies on his hands – we think, because he crawled for longer than most babies. Looking back, although he was a friendly, charming baby, that first year of Richie’s life was a horrible roundabout of hospital visits and disease – and of not knowing whether Richie would ever walk. (He eventually walked when he was two years old.) We didn’t have much time to reflect, and the realisation that spina bifida is a

Wherever you as a family are along the road towards acceptance of your child’s condition, you sometimes expect the rest of the world to be as well. But for many strangers the thought of a small child with a physical disability is new, shocking and fundamentally unsettling, and can lead to some thoughtless remarks. On the other hand, Richie may be our first child with special needs, but to his teachers and his many healthcare providers, he is not.

Learning to trust that the orthotist who makes Richie’s orthotics (leg splints which help him walk) and his physiotherapist know what they are doing, takes time. Trusting that the child psychologist can see things from an advantageous vantage point as a professional, takes time. Taking Richie to his school, and trusting that the social worker there will handle his difference well, takes time.

It has been particularly helpful for us to connect with other children and young adults who catheterise and who use orthotics. “Potty humour” also plays a large part in our family – you can’t afford to be too squeamish when your husband does rectal exams for a living and you often get sprayed with enema fluid at home!

Richie’s life will be difficult in some ways. For the next few years at least, children will keep on naturally gravitating towards him in order to bombard him with questions about his legs. This is a natural function of the curiosity of childhood, but again, we must give Richie tools for answering. We know it’s no fun not being able to run as fast as your friends. And when the most you can hope for is “functional continence” – a regular regime of catheterising and enemas that keep you clean and dry during school hours – well, I imagine that is something that could make you madly angry, when everybody else can just pop to the loo for a quick wee when their body tells them to.

Richie has had to learn some of life’s lessons very early on in his young life. In addition to the fact that he’s a deeply loved, fun-loving, resilient, spunky, quietly confident, intelligent and eccentric little boy, he’s also had initial insights into the fact that life is hard – hopefully balanced by an understanding, eventually, that life is hard for everybody, in many different ways. Perhaps a state of mostly-acceptance will come to him early in life too. While we certainly hope so, we will have to wait and see what lies ahead... YB