“Diabetes is so easy to manage these days.” “Sure he’ll grow out of it by the time he’s 18.” “Is he allowed to eat that??!" and "Oh yeah, my gran has that from eating too much sugar!"
Just some of the things people have said to me when talking about Cayden’s diagnosis for the first time. These statements used to drive me crazy in the early days of diagnosis. I know that people mean well and didn’t make these statements to hurt or offend, they’re just lucky enough to not have to know what type 1 diabetes really is. I was once one of those people. My name is Pam Kavanagh. My son Cayden was diagnosed with type 1 diabetes on 12th February, aged 7. Myself and Cayden attended our first Thriveabetes event in October 2016 and I wanted to share what that experience was like for us and why we are now helping to raise much needed funds to ensure the 2018 conference goes ahead.
FIRST WEEK OF DIAGNOSIS
Anyone who has a child with Type 1 diabetes knows what those first days in hospital are like. That day, when you're told your child has diabetes. It’s a rollercoaster of emotion. You’re in a bubble not quite taking in the enormity of it and what is involved in managing the condition.
Seeing your child take their first ever injection, that’s something I’ll never forget. How can I do that to him every day? Then you’re shown how to draw up insulin in a syringe and the best methods of injecting. Four is the floor, you eat X amount of carb for X amount of insulin, and so on… Yeah sure it didn’t sound too bad, pretty straight forward enough until BOOM! - you’re sent home to start the journey on your own and you very quickly realise what managing diabetes entails and that life would never be the same again.
Guilt set in when I looked back at pictures in the weeks leading up to his diagnosis, why didn’t I realise the seriousness of it sooner. It felt to me like I was taking home a newborn baby for the very first time only without the joy and excitement.
SUPPORT – WHO TO TURN TO
Previously, in times of trouble or strife, the first people I would turn to were my family and close friends but this time it was different. They couldn’t help in a lot of areas as they didn’t understand. My husband and I felt lost and alone.
I spent hours on Google everyday looking up information, advice, complications, cures, gadgets, technology and each night I grew more fearful and wished I could take his diabetes from him. Dr Google turned into Dr Fear. I bought every book there was and watched tons of videos. Information overload. This created another struggle as there was so much conflicting information out there regarding optimal blood sugar levels, what he should or should not be eating, what we needed to do to avoid long term complications and so on.
Some of what I read also contradicted what we were taught in the hospital too so I felt at a complete loss, who should I listen to. I knew I had to connect with other parents living in Ireland dealing with the same struggles as us.
FINDING THE DIABETES ONLINE COMMUNITY & THRIVEABETES
A few weeks after diagnosis, I was getting my own bloods done in a hospital and got chatting to the nurse and her daughter had diabetes. She recommended I join a closed Facebook group called Parents of children & teens with Type 1 Diabetes. It was in this group that I saw a post about Thriveabetes, a one day conference in Ireland for adults, children & families living with Type 1. I got in touch with them straight away looking for more information and received a really lovely email from Grainne, one of the co-founders.
MY THRIVEABETES CONFERENCE EXPERIENCE
Thriveabetes 2016 took place at Kilashee Hotel, Naas, Co. Kildare. There was such a great atmosphere in the venue and it was lovely meeting with people I’d chatted to online. It's hard to describe what it felt like being surrounded by other people who were living with Type 1. In simple terms, the conference felt like a great big bear hug. I was in a room with people that had my back. I could express my fears and anxieties without fear of being judged or freaking anyone out.
The workshops were split into different groups; Adults with type 1 diabetes were in one room, parents/grandparents of children with Type 1 in another and then three rooms for the children, divided up by age.
The speakers were amazing, in particular Joe Solowiejczyk (or Joe Solo as he's more commonly known) and Gary Scheiner. Both certified diabetes educators living with type 1 diabetes. Gary has had type 1 for more than 30 years and Joe 50 years. To see someone standing before your very eyes living well with diabetes for that long made me take a deep breath and smile, I honestly didn’t believe it was possible. They shared some really great tips for managing diabetes on both a physical and phycological level.
MY SON’S THRIVEABETES CONFERENCE EXPERIENCE
The children were divided into three groups based on their age. There were great activities put on for the kids including puppet making and circus skills workshops and a disco. Each of the children's rooms had volunteers who were experienced in checking blood sugars and dealing with hypos so I had no worries leaving him while I attended the workshops. He made friends for life. The kids also had a group session with Joe Solo. He made a great impression on Cayden. He still asks “When can we go to Thriveabetes again?”
Here's Cayden's experience in his own words :)
WHAT I GAINED FROM THE EVENT
Hope, courage, positivity, knowledge and a great sense of community. It was the first time since diagnosis where I felt that fear wasn’t ruling me, that things were actually going to be ok.
I learned far more in that one day than I had from months of reading stuff online. The Diabetes online community is like a lifeline but nothing can compare to being together in person and I think we are very lucky to have an event like this in Ireland. It’s also great for the kids to see other children living with the condition too.
WHY MY FAMILY ARE RAISING FUNDS FOR THRIVEABETES
It's simple: we want to ensure that the next Thriveabetes conference goes ahead. Thriveabetes is organised by a group of dedicated volunteers living with type 1 diabetes. Organising an event of such a scale like this is no easy task and I admire the time and effort the team of volunteers put in. I try to help out when I can. The cost of running the event is quite significant. Ticket sales alone are not enough. Fundraising is crucial to ensure the conference continues and to keep ticket prices reasonable.
FUNDRAISING MUSIC EVENT
My husband, Pete has organised a Fundraising Music Event which will take place on Saturday 12th August in the Moat Theatre, Naas, Co. Kildare. Tickets are €15 and available in advance from The Moat Theatre at this link. We’re hoping to raise all of the funds required on the night and I would be extremely grateful if you could share the event with everyone you know. If you want to support this event but are unable to attend, you can also make a donation directly to Thriveabetes here.
Musical guests will include; Pete Kavanagh, The Cahill Sisters, Hally and special guest, Luka Bloom. There will also be a raffle on the night with some great prizes (Currently accepting raffle prize donations; please get in touch if you are interested in helping out).
We asked Luka Bloom to perform at this event because his music has played a special role in our journey so far. We went to see him perform live two weeks before Cayden was diagnosed and he signed a CD to Cayden and our daughter Lilibeth. Cayden was delighted with this and loves the album. It was the album that we had on the cd player in the car on the surreal journey home from the hospital, not really knowing what was ahead for us.
It’s become one of Cayden’s favourite albums and one he asks us to play a lot so we chanced our arm and asked him if he would perform. We were super excited when he kindly agreed.
Cayden saw him perform live for the first time a few weeks ago and he was over the moon when he dedicated a song to him :)
I would be super grateful if you could take a moment to find out more about the fundraiser and share it with your family and friends. It would mean an awful lot. Click here to get tickets.
Thank you so much for taking the time to read this and if you've not been to a Thriveabetes Conference before, I hope it has helped give you a feel as to what to expect at the next conference.
On Wednesday 22 June in Leinster House,