and to remain calm, when often I felt terrified and vulnerable, and very alone.
Help came out of the blue. One day while driving I heard on my car radio a professor of paediatrics being interviewed. His medical background and expertise made my ears prick up. This could be exactly who we needed. I tracked him down through the radio station and called his office the minute I got home.
“Yes,” the receptionist said, “you are welcome to make an appointment. I have something in three months’ time?”
“Please,” I said, “just ask him if he has heard of a disease called mastocytosis?”
Perhaps she could hear the anxiety in my voice, but two minutes later Prof. Potter picked up the phone.
“Hello – Mrs Lowe?” he said to me. “Yes, I have dealt with mastocytosis before. In fact, I studied under someone in the UK who had a specific interest in it and I’ve had one or two patients through my practice with it over the years. Please come and see me this week. We will fit you in.”
The man was a godsend. Prof. Potter guided and mentored us through the risks, the options, the do’s and don’ts. He managed Kristi’s case from then on and became our go-to person. I kept a very close eye on her and maintained records of her symptoms and responses. She started on a powerful anti-histamine, which I administered if she had a flushing attack. We expended a lot of energy making sure she didn’t cry or over-heat. This made her already erratic sleeping patterns even more difficult and we got ourselves into a terrible loop, spending hours rocking her to sleep every night. Sometimes I was exhausted from the sheer effort of making sure Kristi never cried. Now, a couple of decades later, I wish my daughter could cry more freely.
CHAPTER 4
The younger years
Kristi appeared blissfully unaware of the fear surrounding her condition. She was sunny, energetic and positive. Her unruly blonde ringlets glowed like a halo and were a constant mess, no matter how often I tried to tame them. Constantly on the go, she was tactile, affectionate and curious. Her illness didn’t slow her down. She crawled early and just about started running before she could walk. It was ironic that the child who couldn’t have medication was so adventurous and fearless. Kristi rode her little black bike at speed, climbed trees and threw her arms around every stray dog she could find. I had to learn to sit on my hands so as not to wrap her up in cotton wool and stop her from engaging with the world around her. Ali soon discovered that the only way to keep her sitting at the table during family gatherings was with large bowls of ice that she would crunch and play with for a while before dashing off again. She was an active one and kept me fit!
It was time for me to leave the corporate world so that I had more flexibility to deal with Kristi’s challenges. I resigned and started working from home. My “sabbatical” lasted a few weeks before I started a small PR and marketing consultancy called Upfront Marketing, which I ran for 18 happy years.
By now the girls had become inseparable. When Jen went skipping off to playschool in the morning Kristi would wait at the front door every day, saying, “Jen go s’cool ... I wanna go s’cool too, Mommy. Kristi go s’cool too.” At noon, when Jen eventually came home, Kristi would tumble into her arms, grab her by the hand and drag her off into the garden to make mud pies and potions. Their bond was extraordinary. They spent endless hours playing imaginary games, swimming, dressing up, dancing, rough- and-tumbling and giggling together.
Thankfully, just after Kristi’s third birthday, new mastocytosis lesions stopped appearing. It was a massive relief and a good sign she might be starting to grow out of her condition. When her flushing attacks stopped shortly afterwards, Prof. Potter was delighted and optimistic. Things were looking up. We began to develop a more normal routine as a family and could now send Kristi to playschool. She was thrilled.
There is nothing better as a family with young kids than to have good relationships with other families experiencing similar life stages. Craig, my brother, was by now happily married to the wonderful Margo, whom he had met in Johannesburg while I was living with him. They, too, had two young kids and our families spent a lot of time together. The cousins adored each other. Tayla, a year younger, hero-worshipped Jen. She followed her around everywhere; it was too sweet to watch. Nic and Kristi, on the other hand, were born only 10 days apart, and soon the pair were dubbed “Double Trouble”. They were mischievous and infuriatingly cute, particularly when together. Mud pies ended up in the washing machine, lipstick on the duvet cover and tadpoles in the bath, while Jenna and Tayla played “fairy, fairy” in the garden and Margo and I resorted to a glass of wine while we made supper. When Craig and Margo sat us down to tell us they were emigrating to Australia, it was devastating news.
I was so grateful that by then both Stuart’s sisters had returned to Cape Town. Ali with her son Matt (six years older than Jen) had just moved back from Durban, and a few years later Shirley, with her daughter Natalie and son Kola, returned from Johannesburg. The entire Lowe family was now together in Cape Town. Three decades of marriage later I no longer call them “in-laws”; they are my siblings.
Jenna and Kristi spent loads of time with their cousins Matt, Kola and Natalie and family braais or large gatherings were regular events. Every day, when Stu came home from work, he played for hours with his girls. In summer the favourite game was “dolphins”, which really just meant hours and hours spent swimming with Jen and Kristi riding Stu’s back as he dived like a dolphin to the bottom of the pool. Sometimes they rode bikes until past sunset while the dinner turned cold on the table. Stu was the Pied Piper … all the kids, friends and cousins loved to spend time at our house and play with him. They still do!
Eating together as a family every night became an important ritual for us. We encouraged the girls to participate, to practise and develop the art of conversation. There was always open dialogue in our house about a wide range of topics; nothing was taboo.
Birthdays were a big deal in our home. I’ve always been a believer that if you don’t celebrate life, it won’t celebrate you. So, following on from my family’s traditions, birthday mornings in our home began with singing and cuddles. I would carry a tea-tray, decorated with flowers and cards, to the birthday girl’s room, where we would all jump onto the bed together singing “Happy Birthday” and then open prezzies together. Ali is also a big lover of birthdays, and so in the evenings there would always be a family gathering with an exquisitely set table, thanks to Ali, and time spent with all our loved ones. The girls loved it, but even so, it was an odd quirk of Jen’s that she always seemed, for no apparent reason, to experience some sadness on her birthday. She didn’t like getting older and had a sense of loss that another year had gone past. That didn’t make any sense to me at the time, but remembering it now makes my heart ache.
Medically, Kristi was now far less at risk, and I started to slowly grow my business. I had a much larger office outside the house but was still able to be totally present for my girls. I worked hard to keep the balance between the two just right. Stuart, really focused and motivated, was approached by a much larger publishing house and started as their circulation marketing manager, before moving up the ranks to become publisher of their biggest title, CAR Magazine. A few years later, he was appointed CEO of the business. Stu was really flying. I was watching him tackle complex business challenges with great leadership and a strong strategic vision. He was stepping into his full potential both in business and as a husband and father.
Through the uncertainty of Kristi’s condition, Stu and I had remained and become even more of a solid and loving team.
CHAPTER 5
The Magic Bissie Tree
One
