When my eldest was first diagnosed with Type 1 Diabetes eight and a half years ago, everything that I saw via my online searches was negative. Negative and downright scary.
This was a major part of why I started my blog in the first place, to help others feel less alone and hope that when they were sat in that hospital bed with their child their google searches would find posts of mine showing that life does go on and things do get better.
I really did feel so alone at the start, Type 1 Diabetes is a major thing to live with. For my son and the whole family and at the start it felt like we wouldn’t ever be completely happy again.
The diagnosis when he was five took me as a parent, right back to feeling like I did when he was a newborn baby. He suddenly seemed so fragile and I felt so ill-equipped to cope and make him a happy little boy again. Coming home and him being hit with the reality that we didn’t leave the injections at the hospital when we left almost broke us both.
I was suddenly not just Mummy, I was playing the role of basically keeping him alive with injections, blood tests and more. I wasn’t the person who cuddled him and made him all better when he was hurting, I was the person who was having to hurt him to keep him healthy and alive. It was a huge adjustment for all of us and I really felt the pressure and responsibility.
Until I got together with Si seven and a half years ago I really felt so alone in coping with everything and managing my son’s Type 1 Diabetes especially as I was a single parent for part of that time but, Si has always been amazing. He’s held me together during hard times, he’s been there next to hospital beds with no sleep when we’ve needed him and he actually researched and learned how to carb count and taught me whilst we were on a waiting list to learn how to do it. Having him in our lives has made such a difference.
However, neither Si or I have Type 1 Diabetes and we didn’t really know anything about Type 1, so it often felt like flying blind especially for the first couple of years. We weren’t sure what to expect as time went on and this is where the T1D (Type 1 Diabetes) community comes in. There are some brilliant Facebook groups full of other Type 1 parents such as the Parents of Children With Type 1 Diabetes In The UK group, or locally there is Type 1 Family Support in Cornwall and SKYD Supporting Kernow’s Young Diabetics.
These groups are invaluable for being able to ask questions in when you aren’t sure of something, or even just for reading to see what advice is being given to other parents if you’re too shy to post. Not only that, but they definitely make you feel less alone with everything. There are so many families dealing with the same issues and living their lives ‘normally’ and happily despite Type 1.
Through one of these groups I have had someone who I have never met before send blood glucose strips into school with their child to give to my own when our prescription order was messed up and I was in a panic. They weren’t the only ones to offer either. No matter what time of day or night it is, there is always someone in these groups around to give advice or just to chat.
There are also so many adults with Type 1 Diabetes who Tweet openly about their Type 1, both the good and the bad bits. Between them and the adults who blog so honestly about living with type 1 Diabetes (I have another post coming soon mentioning a lot of them), they have helped us to know more what to expect as time goes on. To know what challenges our son may face, but also to know no matter what the challenge there are people out there who have faced the same and come out the other side.
With me showing my son the groups and all the online active Type 1’s out there, he feels a whole lot less ‘different’ than he used to. He doesn’t feel the odd one out, he knows there’s a whole community out there and a mostly lovely and helpful one at that.
Thank you T1D community x