This week in the UK it’s Cystic Fibrosis awareness week. The CF Trust is encouraging people to spread awareness about Cystic Fibrosis using the #PowerOfUs campaign- it’s trying to get people affected by Cystic Fibrosis to share their stories and is also encouraging them to speak to one new person a day about Cystic Fibrosis.
Today me and Joe went to a new mum’s and toddlers group which is always a brilliant experience for Joe who LOVES being with other children and gets stuck in playing, dictating and socialising straight away, but often a horrific experience for me as I take ages to warm up, am terrified of meeting new people and have an innate fear of Joe drinking out of other kids sippy cups (the germs! Oh the germs!)
Luckily today’s toddler group was really lovely, the group set in a picturesque village, it wasn’t too busy, the other parents were all very friendly and the toys all looked cared for and relatively clean (plus we only had two close calls with other kids sippy cups and a half chewed Garibaldi).
One of the reasons I have found it difficult to get to know other mom’s at places like mom’s and tots groups has been my reservation about talking about Cystic Fibrosis and Joe’s condition. Simple questions like: “Would your little one like a biscuit/chocolate bar/toast?” ,“Is Joseph your only child? Are you going to have any more?” and “do you work?” if I am to be honest and open with new people all have a cystic fibrosis related answers.
So my options are to either hold information back about his condition and just give basic answers to questions which causes me to be a bit awkward and lost for things to say or to be open and frank with people and for example say “Yes, he’d love a biscuit but he just needs to have this medication first he has Cystic Fibrosis…..etc etc” but then fear being the “Mom of the boy with cystic fibrosis” rather than them seeing Joe for who he is- a confident, very clever, hilarious little super hero.
It’s so difficult to tell the story of life with Cystic Fibrosis because you are torn between wanting to raise awareness for the condition and for others to understand how hard it can be, but at the same time I don’t want people to feel sorry for Joe because he’s so much more than Cystic Fibrosis. How do I get people to empathise with my cause but not pity and feel sorry for Joe?
How can I explain how Cystic Fibrosis is such a huge thing in our lives, yet such an insignificant thing at the same time?
Despite my reservations, in honour of cystic Fibrosis awareness week I ended up chatting to two different people (both grandmas who were looking after their grandchildren) about Cystic Fibrosis at toddler group this morning, and they were both very interested and actually relatively knowledgeable about the condition- they both knew about physiotherapy/ percussion and one of the ladies knew somebody else who’s daughter had CF so was aware of medication being taken with food.
And luckily they didn’t get chance to pity Joe. Who could pity the 23 month old who ran round the room like a madman, skidding on his knees like Peter Kay, who chatted to all the other kids, and took control of the singing session at the end, dictating to all what nursery rhymes we were to sing, and booming them out word for word with absolutely no fear and such bombastic joy that there was no way you couldn’t see his personality shine through.
So I will continue to tell our story and spread awareness about this awful illness because it’s important, and these stories need to be told. But now I also know that Joe will show everyone that he is not to be pitied. He will show everyone how brave and wonderful he is despite Cystic Fibrosis and because of it.
We will tell our story because we don’t want you to pity Joe. We want you to fight for him so he can continue to be awesome no matter what CF throws our way.
So if you have CF don’t be afraid to tell your story and raise awareness about the condition. And everyone please help the Cystic Fibrosis Trust fight for Joe and all the other fighters out there. You can support the CF Trust by raising awareness and finding out more about the condition, by donating to my sister in laws virginmoneygiving page (she is running a half marathon for the CF Trust in October this year) You can buy something from my Etsy shop (all proceeds got to Sarah’s Just giving account and ultimately to the CF Trust) or you can go direct to the CF Trust’s website here and donate.
Thanks for reading!