I am so, so honoured that my mum took the time to write this. Please, please share this everywhere you can - I think she gets the message across so clearly about why we need a cure so badly (I know I'm biased as she's my mum, but I think it's great).
Twenty years ago today my life changed forever, taking me on a journey which I never dreamt I would make, did not want to make and hated every minute of it.
Siobhan had been unwell on and off, the usual viruses that 2 year olds have nothing serious yet there was a nagging doubt that something was not right. She started to have an unquestionable thirst, she was wetting herself having previously been potty trained, and was generally miserable.
We had been to the GP at various times and nothing conclusive was found, and then we changed GP. I made an appointment to see him. I had read my friend’s ‘Readers Digest Book of Family Medicine’ (no internet at home in those days!) and between us we agreed that diabetes was a possibility. Anyway, ready with my list of symptoms I took Siobhan and her sister round to our GP for our appointment, our first meeting which was to be life changing for my family and a learning experience for my GP. He listened patiently whilst I described Siobhan’s symptoms and then asked if she would be able to produce a urine sample which she dutifully did. After testing, he calmly said that I should go home and pack my bags ready for hospital admission as she had diabetes.
Incidentally that would be the last time she would produce a urine sample for approximately 15 years, as from that time on she flatly refused to cooperate with that request as part of her way of stamping her feet against this terrible injustice.
So I left the surgery, walked home in a haze to ring my family to let them know what had happened. In those days there were no mobile phones, and I felt as though I was taking part in a film, this was not happening to me and it hurt me to look at my beautiful daughter knowing that something had gone dreadfully wrong. She was broken and I could not mend it for her, what kind of mother was I?Should I have breast fed her for longer? Did she have too much sugar in her diet? Why had this happened, she did not deserve it?
The following week or so is very much a blur; I had Siobhan’s sister to look after so we had a routine of Dad staying at night with Siobhan at the hospital whilst I tried to maintain a routine with her sister. We had to learn how to inject her twice a day and how to check blood sugars using her tiny toes to pinch and squeeze.
The consultant took us into a room one afternoon to tell us officially that she had type 1 diabetes and as I listened I knew he was expecting me to cry but I couldn’t. I thought up until then that it was a big mistake and she would get better but now it was official. All I could sayto break the awkward silence was that she had a birthday party planned in 2 weeks. I think that was my way of saying this was not convenient, and the response was that I could use cream cheese instead of icing on the cake.A nurse gave me a leaflet on the British Diabetic Association and that was that.
We were taught how to count portions of carbohydrate and the dietician worked out how many she could have at each meal then snacks in between .They kept Siobhan in for a few days whilst we got used to injecting her and they also induced a hypo so that we knew what to look out for, quite barbaric looking back but we just accepted it as the right thing to do at the time. Our family came to visit bring lots of diabetic products which we quickly learnt when we were at home were expensive, caused diarrhoea and did not particularly taste nice.
When word got around people tried to say the right thing but inevitable said the wrong thing in my eyes. I was shocked and angry and could not see anything positive in this experience. The fact that choice had been taken away from my daughter made me sad and angry; she could not have a HGV licence, or join the fire brigade. How would she travel, get a job or enjoy life with this terrible illness?
People said things such as:
“It’s a good job you are a nurse”………not, I did not do my training to inject my daughter twice a day, it was not natural
“I could not inject my child”…………….yes you could, otherwise she will die, you do not have a choice
“God chose you to have a diabetic child because he knew you could cope”……………………….well I’m not coping so thanks for the complement but I want my daughter back without the diabetes
“Be grateful you are not in Africa, they do not have insulin there”……………………true but at this moment in time I only care about my daughter so I have no interest in health care systems around the world.
So that was the start of the journey. Our GP saved Siobhan’s life, there were no other diabetic children in the practice and this was the first time he had made the diagnosis in his career so I’m eternally grateful that he listened to me and acted on my instincts. I still thank him with a card on special occasions such as her 21st birthday and I think it is important to remind the medical profession of the impact of their care.
Today, celebrating her 2oth year of living with diabetes I can reflect on the experience more positively. My daughter has got on with her life despite having diabetes;she has travelled around Europe and worked in America and Paris, experiencing a ‘normal ‘life which I never thought would be possible. That wicked disease has moulded her into a caring and sensitive woman who just gets on with it. She has had relationships and the usual ups and downs of life itself and rarely complains. Her sister has been an integral part of this, where I have been protective and scared; she has often reminded me that she will be fine. They have a good relationship with a lot of love and laughter, and I was lucky that there were no repercussions as I inevitably had to give more attention at times to Siobhan and her condition, but her sister keeps her in check often ribbing about her ‘dysfunctional pancreas’ .