Our guest post this week is from Thriveabetes Organiser, Paula Short, who’s son, Theo, was diagnosed with type 1 diabetes about seven years ago. Paula has been working in the field of counselling and psychotherapy since 2002. Both she and her husband, Philip, coordinate the parent’s programme for Thriveabetes.
Paula describes how those first days, weeks and months felt as a parent of a child with type 1 diabetes and how attending Thriveabetes, meeting other parents and listening to speakers who understood helped her and their family adjust to this new life.
Register soon for Thriveabetes which takes place on Saturday 19th October 2019 in The Red Cow, Dublin.
Thriveabetes felt like finding an oasis in a desert.
“I felt Surrounded by Empathy and Understanding”
By Paula Short
When our perfectly healthy seven-year-old boy was diagnosed with Type 1 diabetes, it felt like we entered a new and scary universe. Overnight, so much in our lives had to change.
Like all parents in this situation, we had to learn the academics of this life-threatening illness, including carb-counting, GI rates, insulin ratios, etc. At the same time, our hearts were breaking as we had to stick needles into our son’s beautiful skin.
Freedoms that we had been enjoying were lost. Complete nights of sleep disappeared and we felt like we had a newborn again. Alarms were set to wake up every few hours to check on him, and this broken sleep led to feeling wrecked the next day. Mornings were full of fear if my son didn’t appear downstairs at the usual time. Sleepovers with Grandma were cancelled. School was impossible for a few weeks, then involved visits for me throughout the day. Trips to friends’ houses became trips for me also, as he wasn’t ready to go alone. Prescriptions and appointments had to be fitted into this new life, living with diabetes in the house.
All of this meant my work was almost completely stopped in order to care for him which was another overnight adjustment. Also, my mind was challenged by fears regarding the future and how his future might be different to what we had imagined, now that he had Type 1.
All of this had to be managed while the diabetes itself was happening. My son’s BG was vacillating wildly between highs - causing him to feel sick - and lows, causing him to collapse and not have enough breath to call for help.
It is no wonder that our family felt consumed by an overwhelming whirlwind of information and events and our hearts were fractured in pain, sadness and exhaustion.
The hospital we were attending at the time offered no psychological or emotional support and on occasion would even add to the trauma. Friends and family did their best but it’s extremely difficult for anyone outside the home to know the enormity and relentlessness of this illness. I found it difficult to cope with well-intentioned comments telling us, ‘it could be worse,’ ‘at least he’ll be used to it when he’s older,’ ‘he’ll be fine,’ ‘don’t worry,’ and the classic, ‘someone I know has diabetes and they’re fine.’ Medical staff, friends and family can all, inadvertently, give the message that you need to gain better management of diabetes and therefore the problem and solution is with you! There’s nothing like a scolding when you’re doing your absolute best already!
When I first attended Thriveabetes, it felt like finding an oasis in a desert. I cried with relief. It felt wonderful to have someone understand the difficulty and have true empathy for what we were living with. There is something so healing in feeling understood!
The presentations were wonderful and I spent the day meeting other parents who had faced, and were facing similar challenges to us. I learnt so much from them from a practical point of view. It was the first time I saw a parent looking at her phone to see the BG of her son who was somewhere else in the country with his auntie. I watched with
fascination as she watched his BG dropping, communicated with the auntie regarding what to feed him and then watch the BG start to rise.
However, the greatest thing that day was the relief I felt at being with others who knew what this was like. I felt bolstered by the shared experience. It felt good to know that others were struggling too. We were not alone. I didn’t feel like anyone was expecting more of us than we were already doing. Sometimes, no matter what you do, the numbers don’t make sense. Living with diabetes is really about learning to accept the unpredictability and irregularity of this illness. Learning to be okay with giving it all your absolute best but being able to accept that it often won’t work out as planned.
I have been a psychotherapist for the past twenty years. I have learned so much about the human condition from our experience with Type 1. I have had to navigate the delicate balance of taking the best possible care of my son, whilst not neglecting my daughter, not neglecting my marriage and not forgetting to take care of myself!
My goal as a facilitator at Thriveabetes is to offer some comfort and support to parents who are feeling alone, isolated or over-whelmed at the moment. This may well be the families with a new diagnosis or it may be the families who are struggling with the relentlessness of the demands of diabetes or any one of the myriads of other challenges we face.
Please say hello at Thriveabetes. I would love to meet you. Please share how you are challenged by this illness, or how you have been helped through the challenges. If you are struggling at this time, please know that others are struggling too and together we can be supported.
Thank you so much Paula for sharing your family’s story with us and for giving so much of your time to create such a valuable programme for parents of children with type 1 diabetes. Don’t forget to register soon for Thriveabetes which takes place on Saturday 19th October 2019 in The Red Cow, Dublin.