REAL life

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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

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