Prof Carol-Anne Benn explains how being a mother clouded her understanding of her son’s Type 1 diagnosis, even though she was a clinician.
Something was wrong, I knew it…my beautiful child looked gaunt, he had wasting in his temporal regions – a sure sign something was wrong. He was scrawny…this was a big boy who loved his food and had lost 25kg in a few months. He claimed healthy eating and lifestyle, and was drinking copious amounts of water…surely this was all good? Wrong.
The niggling in my head said could this be drugs? Something is not right. I sat my gorgeous child down, and said “Mom wants to pull some bloods”, and went on to explain that I was testing everything – from HIV to drugs, from liver function to diabetes – and why. I told him that if he had anything to tell me or wanted to discuss something, that he could do it now, after all that’s what family is for.
The results came back – his glucose was 24, and his insulin ‘was in its boots’. No family history, healthy family eating, and my child had Type 1 diabetes?
A blur of pre-coma emergency admission, specialist appointments, guilt, frustration and recriminations…should I has as a clinician have picked this earlier?
He had minimal feeling in his feet- surely this was my fault? A fit of anger at family members who phoned him recommending a spiritual unit with a 100% success rate in curing diabetes with prayer and herbs! No injections needed.
I knew that if he did not take insulin, he would die. I listened to my friends -colleagues with experience; I asked who was the best to see and went there. When told about the honeymoon period (the period of time shortly following diagnosis when the pancreas is still able to produce a significant enough amount of insulin to reduce insulin needs and aid blood glucose control), I believed his would get better and he would not need insulin for ever. This has not proved so.
I came home from appointments, and re-explained his condition to him and what I thought the doctor said…he looked at me and said, “Mom, did you not listen? Did you not hear?” I realised that sitting on the couch, anxious and scared as a patient, partner or family member, you take so little in.
I learnt that no bargaining is possible. I learnt to ask questions, even about things I thought I knew. It reinforced for me that life is out of our control, that it takes bravery to live with illness, that we need to accept what we can’t change and change the habits we can, and be tolerant of patient’s decisions. even though we may not agree with them.
Daily I see my child’s struggle – his strengths, and sometimes his failures in accepting and living with his disease. But most of all, I see his bravery in confronting and taking treatment. I am proud to be his mom.
Compliance in teenagers living with diabetes
Do I have advice? Always. Do I have solutions? Not always. Ups and downs of compliance, times of shouting frustrations at non-compliance and begging, bribing, and tears (on my part).
What I have learnt is that the secret to diabetic teenage compliance is ensuring your child finds happiness in life (this is not a quick fix) on the road that they chose – seeing a journey that they want to take, they are more likely to be compliant. Happiness and a good sense of self goes along way to ensuring this. This is a continual journey for Dom and I. We both have made mistakes, but here is to my supporting his journey.
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