I was meeting up with a mum of a teenage daughter who was newly diagnosed with coeliac disease. Before our rendez-vous, I asked my gf son for some words of advice for me to take along, which he gave candidly and quickly:
- You do get used to it
- Baking paper… lots of it
- The mums get more stressed than you do
So there it is in a nutshell. My son’s words of wisdom were spot on and I haven’t taken the third point too much to heart.
While it is now four years since KJ was diagnosed, I totally understood the place this mum was in : overwhelmed and devastated. At the time of diagnosis, I didn’t know what to expect, how to do what we needed to do, who to talk to. Nor did I know how to calmly deal with this change.
Over a cup of coffee, this mum and I chatted: about the lead up to diagnosis; a rather unhelpful visit to the dietitian; how to convert eating patterns and change cooking preparation routines; the best biscuit recipe,store bought bread and pasta brand. I loaned her some recipe books, I took along the packaging of some of our favourites, I bagged up biscuits and snacks for taste testing.
And in a nutshell, it is the mothers (or main care givers) of children with coeliac disease who need support and age specific advice on products, recipes and school lunches. Additionally, as a parent of a teenager, one might be tip toeing through the emotional minefield of the teenage years and then a coeliac disease is like a bombshell that one didn’t see coming.
So today is my blog anniversary. My focus is still the same: to give help and advice to other parents of teenagers with coeliac disease and to make the blog my box full of goodies to share.