It’s Diabetes Blog Week, that time of year when I try to read every post on every blog published in the name of Diabetes blog week. Ultimately this means a week of no sleep and copious amounts of coffee to keep one functioning. However, I always remain grateful to the awesome Karen Graffeo of Bittersweet diabetes blog for this week, and her commitment to organising this rabble together once a year.
The brief for day one is: “Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.)”
I’ve been blogging for a little while now, and my motivation was really very simple. I didn’t want another parent feeling as alone and frightened as we did at times during those early days. When Pumplette was diagnosed with T1D, I couldn’t find one single person who was either going through, or had recently been through, the things we as a family were experiencing. Any parental support groups we attended were very tricky. No one there had experience of toddlers with T1, let alone babies. I already felt very alienated from my peers with young children, and coming to a group where other parents spoke the same medical language should have made me feel less alone. Sadly, it did the opposite. It was in those meetings that I realised just how unusual our familial situation was, and there didn’t seem to be any stories of hope for the full childhood that lay ahead of her. And so we stopped attending these groups too. It took until Pumplette was almost 5 before we started to meet other children with T1 of a similar age to her. That isolation felt very suffocating at times. I had no point of reference to see whether we were doing ok, other than her team of health care professionals. They were great, and endlessly encouraging, but it wasn’t the same as the recognition that comes from “Me too!”.
And now, as we stand here 12 years post diagnosis, so many things have changed. The online world has exploded in that time and with just a few clicks of a mouse, one is able to find someone else to identify with readily. Organisations are much better prepared for all ages of diagnosis (although I do acknowledge this isn’t perfect, believe me, its evolving in a positive way all the time), and from the sheer numbers game, and the amount of parents of tiny T1s I know personally, there are others around to share your experiences with. They will champion you and your triumphs and be there to hold your hand at 3am when everything feels like its tumbling down around you.
Of course the messages of early diagnosis are important too – it is my dearest wish that no other parent or family member should ever see their loved one critically poorly at point of diagnosis – but this takes persistence and tenacity and it will not be solved overnight.
Above all though, I like to think the silly stories I regale you, dear reader, with in this blog, will give you enormous optimism about the future that lies ahead of your newly diagnosed child, or loved one, or even you.
Thank you for sharing your story. You bring up a good point about parents feeling alone early in your child’s diagnosis. It would be great if doctor’s had a list of parent D-blogs that they could share with their patients upon diagnosis.
I’m sorry for the tough road you’ve had, but I’m so glad things have gotten much better now.
I am glad you’re out there! I love the joy and hope I read in your blog. Our kids need the positives!
I just read your post about the sleepover. Sounds like wonderful fun.
Parents of the youngest members of our community are the true heroes of the community.
I referred your blog to the TUDiabetes blog page for the week of May 16, 2016.
It’s good to not feel alone. Trying to read every post is a feat! I’ll make it through them all sometime in … July?