REAL life

survive, Jessica would have to have her blood glucose levels checked by pricking her finger and drawing blood and also injecting insulin multiple times each day.

“Ask any parent what they wish for their child and they’ll say ‘happiness and health’. My biggest fear was that Jess would never live a normal, happy, healthy life. I remember thinking to myself, ‘How on earth am I going to get her safely through school and would she be prejudiced because she was diabetic?’ With Jess being so young and unable to communicate how she was feeling, it was really tricky for me to know if her blood glucose was too high or too low without doing a finger prick test. The first year was the hardest. Just before her diagnosis Jess had started to walk, but after her diagnosis she reverted back to crawling for a couple of months. I found this very upsetting, as I was so proud that she’d taken those first steps. Getting medical aid to pay for enough glucose test strips was a huge challenge for us.”

MAKING CHANGES

Jessica’s diet and routine have changed over the years as she’s grown. “It was tricky navigating the toddler years when she was at her most fussy eating phase,” says Anne. “No foods are banned in our household – it’s all about striking a balance. A healthy diet and regular meals are essential. We count carbohydrates to calculate her insulin dose, so all her food is carefully weighed and measured. Jess partakes in school sports, just like her friends, and loves going to the beach. Birthday parties are part of most children’s lives and were something I had to get to grips with very quickly. Jess is allowed to eat whatever is available at a party in moderation. I always stay at the party to help her carb count and together we muddle through. Sometimes we don’t get it right, but mostly we do and as a result she doesn’t eat secretly or feel deprived. Jess’s school has been incredibly supportive of her diabetes and I’m enormously grateful for that. This past year at school has been the first year where she has taken on the management of her diabetes herself with the teacher simply keeping a watchful eye.”

Today Jessica wears an insulin pump, which is a permanent insulin feed into her body. This replaces the injections. The pump holds a vial of insulin that is dispensed as needed and is calibrated with personalised settings to calculate the dose of insulin required for Jess. It has given the family far greater control in the management of Jess’s diabetes.

AN ADJUSTMENT FOR ALL

Having a child with diabetes changes a family’s dynamics. “It’s no longer easy to be spontaneous,” says Anne. “I find things just go awfully wrong when we do things on a whim. Lack of sleep has been a bit of a game changer as we have to get up in the middle of every night to check blood glucose levels. The impact financially has also been huge – the medical supplies needed to keep Jess healthy are very expensive and the medical aid schemes in this country are not particularly cooperative.”

Anne adds that the hardest part of your journey with a child with diabetes has been the realisation (and acceptance) that this condition will never go away. “People often say that it is a ‘manageable’ disease, and they are right. But what they don’t realise is that for 24 hours a day, seven days a week you are managing it. It is exhausting and if you ignore it, even just a little bit, something always goes wrong. Sick days can be particularly stressful. Sometimes, there can be as many as two-hourly finger pricks in a 24 to 48 hour period, depending on the illness. The key thing I’ve learnt about the condition over the years is that diabetes is a very complex condition to manage. I’ve been doing it for some time now and I still have loads to learn. It’s not as simple as taking your insulin at set times and getting on with your day. Stress levels, activity levels and in Jessica’s case, the heat, can affect your blood glucose, which means that you are constantly adjusting insulin doses. Her sensitivity to insulin also changes at certain times in the day, meaning that she needs more insulin in the morning than in the evening even if she was eating the exact same meal. It’s not easy for an adult – let alone a young child – to manage on their own.”

LOOKING TO THE FUTURE

Jess recently celebrated her ninth birthday and Anne is optimistic that with every year that passes, medical science will be one step closer to finding a cure for diabetes. “The life saving devices used by diabetics are getting smaller, less invasive and more advanced. At this stage there is no cure for diabetes, but my hope is that there may well be in her lifetime. Sadly, there is a strong chance that she may pass it on to the next generation. Jess doesn’t remember a life before diabetes. She is very accepting of her condition but it does make her sad and a little angry at times. She longs to be just like the other girls in her class who rush out to play at break time without a second thought while she has to, in her own words, ‘waste time’ checking her blood glucose levels and administering her insulin. It‘s a huge responsibility on little shoulders. Playdates can be tricky and sleepovers are not an option at this stage.”

Anne’s advice for other parents with babies and toddlers who are diabetic? “It does get easier,” she says. “It’s been just as important to balance Jessica’s emotional wellbeing as it has been to take care of her medical needs. It’s unrealistic to expect a child to show restraint all the time. Try to create a good support network, be it friends or family, to give yourself the occasional break.” YB