Was it really four years ago that Jane took Amy to the Doctors to find out what was wrong? Four years since the Doctor took that simple blood test and called us within minutes to tell us to go to hospital? Four years since my daughter found her childhood all gone?
We all try to be quite positive about life with diabetes in general but not today, today sucks. Big time. Turns out I don’t quite feel as positive as I did last year.
Whilst I truly believe that Amy’s diagnosis has actually helped in certain ways (determination to succeed, family health) I’d give it all back in a heartbeat if it meant Amy never had to do another set change, or finger prick glucose test, or think about this condition ever again.
The year ends with Amy having her lowest HbA1c yet at 7.2% and with us knowing how we could get it lower if we chose to try a little more. There’s no doubt that we’ve done some great Diabetes related things this year and that mainly focuses around the other people/children with Type 1 Diabetes, or their parents, we’ve met this year. At the moment it’s hard to focus on that.
So forget all those fancy electronic devices, your bionic pancreases, your smart insulin; just figure out how to swap my pancreas with hers. That’ll do me, let me take this burden away from her.
I’d like to think that these words will be the last time I think about Diabetes today. But I know it won’t.
I’m so sorry you’re having a bad day today. If it’s any help at all – I’m sure it’s not – you’ve been a great support to others going through the same. After 4 months there are days when I feel ok about things. But like you, there are also days when I want to give up and give it all back, and suffer the frustration of having no choice but to carry on. Thank you though, for being there. I hope tomorrow feels better.
Hi Helen, thank you for your kind words, they have helped. When days are dark it’s hard to remember the help I have given to others throughout the last year especially, so thanks for reminding me as I’d kind of forgotten. I’m so glad I’ve been able to help you and your family throughout the last few months, although obviously for both our sakes I’d wished I’d not have had to.
The days are getting brighter as we move further away from the diaversary.
Keep going Kev. I’m only four months into this – my three year old daughter was diagnosed in September. I don’t want to be told it’ll all be fine all of the time and I don’t want to be promised a cure tomorrow. But I am encouraged by the effort and money being thrown at Type 1 Diabetes (and what appears to be more and more coordination in those efforts) and I am encouraged to read about many other children living with Type 1 Diabetes having many good days – and doing some amazing things – as well as having some bad days.
After a career involved in and around oncology, including paediatric treatment, its only been these last few months that I’ve really come close to being able to fully understand what many of the amazing parents – and children – I’ve encountered over the years have been going through.
Like you, if I could, I would swap places / pancreas’ in an instant – first making sure my donated pancreas wasn’t also going to pack-up in the near future of course 😉 But for now, I’ve got to satisfy myself with learning and understanding as much as I can, to try to make sure I’m doing the best I can as a parent and your blog has provided us with a wealth of information, insight and honesty over these past months. Thank you.
Hi Matt, thanks for your comments and glad you’ve found the blog useful to you over the past few months. Like you I’m very pleased with the sheer quantity and diversity of the research which is going on at the moment and the feeling of hope is strong.
A career in paediatric oncology must be really tough on the heartstrings; whilst I realise life with Type 1 is no walk in the park I am amazed by the sheer courage shown by parents of children with many other conditions, many of which I feel I couldn’t cope as well with compared to how I (normally) cope with Amy’s Type 1.
It’s all right Kev. You’re allowed to have days when you feel like this. I try to stay positive about my diabetes all the time, but sometimes I turn into a right grump about it all! I guess you can get positivity-fatigue just the same as you can get diabetes burn-out. Sometimes you just need some time-out or a day-off from it all. The great thing is, with the start of 2015 we are one more step closer to new tech, new pumps, fantastic research taking place and a better life for people with diabetes. I truly believe that and that’s what keeps me going. We also have each other for support and the power of that friendship should not be underestimated. Together we are a force for positive change and we will get there.