‘It’s a blood sugar reading of over 30. Looks like your son has diabetes. You need to go straight to hospital now’. The doctor’s words wouldn’t sink in. From getting up that morning and thinking my son (then two years old), was a just a bit ‘under the weather’; then three hours later, we were on the Children’s Paediatric Ward, him laying on my lap; limp, listless and attached to a drip to manage ketoacidosis (potentially life threatening condition from running high blood sugars). In the midst of that overwhelm, how grateful we were for the NHS.
From day one of diagnosis, the diabetic nurses trained us to test blood sugar, inject our son with insulin, treat hypos and manage hyperglycaemia. Personally, I am quite squeamish with blood and needles, so this wasn’t easy. However, there was no luxury of ‘getting used to the idea first’ – diabetes was here today and my son needed me now. Fortunately, the diabetic nurses were incredibly supportive: offering practical and emotional help, but the hospital stay was a mere few days, before we were out in the world again and going it alone.
I felt overwhelmed in those early days: panicking about how I would ever remember the new routines or how I would cope if his blood sugars went awry. At the same time, I was trying to maintain normality for my son, his twin brother and older sister. Thankfully, being diagnosed at such a young age, he accepted his diabetes more easily. He cannot remember life without the illness, and this somehow simplified the transition. We fell back into normal life, just accompanied by diabetes in our thoughts. With 6-8 blood tests per day, and two-hourly insulin injections, I relied on the support of my close family and friends, alongside telephone calls to the hospital nurses.
After the storm
As the chaos of the early days subsided, the diagnosis could be mentally processed. When your child has diabetes (or another health condition), you will understandably grieve for the healthy child you had before. You are going to go through cycles of feeling sad, low, blaming and angry before you begin to accept it fully (if that is ever completely possible). I was fortunate to have good support but was also proactive in seeking it out. Particularly in the first few years of my son’s diagnosis, contact with others helped tremendously. If I hadn’t reached out, I think I would have felt very isolated and alone with coping.
A year into my son’s diagnosis, he started using an insulin pump. We also learned about carbohydrate counting so we could tailor insulin dosages to the amount he was eating. Knowledge is power and this extra education made a remarkable difference to diabetes management. To begin with, it was stressful switching from injections to a pump and was remindful of the early feelings of overwhelm and confusion. Once established on a pump though, my son was happier for it as it gave him more freedom with eating and blood sugar control.
Thankfully, in the UK today, diabetes can be managed relatively well. This means that the many health concerns experienced historically to people with a diabetes diagnosis, need not be an issue (or are much lower risk). However, diabetes can never be controlled as well as you would like. You cannot achieve the blood sugar control of a non-diabetic. Mostly, my now ten-year-old son lives life as any normal, healthy child. However, nights away at friends’ houses or days at school when his blood sugars run rampage for no apparent reason, are all part and parcel of life. As a parent, you will feel understandably anxious in these situations. You can try and be prepared, pass on knowledge and be on call if needed – but still there will always be inevitable bumps in the road.
I am now coming to the stage with my son where he is taking more responsibility for managing diabetes and we are stepping back. This is hard but necessary to do. I feel anxious letting go and accepting that initially, there will be blips as he gains confidence in going it alone. Nevertheless, I want him to feel empowered and independent, not restricted by our potential over-control of his condition. I try not to show my anxiety but vent it elsewhere and I hope that he will self-care with his diabetes, modelled on early experiences of managing it, and learned from us.
We have tried to continue with life at home as normal, post-diabetes diagnosis. Diabetes is not generally a topic of conversation or a big deal. My son does similar activities and eats the same foods as his siblings. Diabetes is more a quiet hum in the background of day-to-day life.
I don’t want the diagnosis to feel like a limitation placing fears on my son’s engagement with living. Realistically, he is always going to have to factor diabetes into his decisions and life choices, but it can be managed and hopefully his life will be long and healthy. As a parent, I have often felt anxious, sad, angry and confused about the diabetes. These feelings are all appropriate and relevant – but I find outlets for them – by talking with my husband, my friends, other parents who understand or the paediatric team. By dealing with my own emotions, I can then offer more calm and stability for my son, which I hope will help him take diabetes in his stride.
For more help with managing diabetes, visit Diabetes UK. If you are struggling to come to terms with your child’s diagnosis of diabetes or another health condition, you might want to seek out some support through counselling. Counselling can help you process the understandably difficult feelings that might arise from having a child who is unwell. Processing these feelings can be valuable for your own coping and in supporting your child.