Finding comfort in the CF community - Part 1: Straight from the Lungs podcast: My notes in hindsight:
When Arlo was first diagnosed I actually didn’t engage with much CF related social media content. Everyone will feel different in times like that but I felt the need to be offline, (avoid google!!), and just focus on being present with Arlo and my husband - and to process my feelings and this new way of life we were learning about. (When I say ‘way of life’ I mean the things that all people with CF have to do daily to keep all that bloody mucus at bay!🙏I’m learning so much more on this at the moment! Blog post probably incoming!)
I spent a lot of time in those first few days and weeks on the @cftrustuk website (this was the only website that our paediatric team recommended we look at initially) and the site gave me a good start on the basic facts around CF. But I was really looking for something more - something that would give me a glimpse of CF in real life.
I randomly decided to search for cystic fibrosis in the podcasts app on my phone and I came across the most wonderful podcast called Straight From The Lungs (@lungspodcast). I could not recommend this series more to fellow parents of a CF baby.
@wmaer, who has cystic fibrosis himself, has created a beautiful podcast series that takes the listener on a journey through the real life milestones that a CF family might go through - diagnosis, hospital visits, school, university, falling in love! To name just a few.
Each episode features the voices of multiple different contributors - some young people with CF, some older people with CF, parents of CF children, friends of those with the condition. All giving a very real, raw and honest account of their experiences with cystic fibrosis.
I became engrossed in it as it’s incredibly compelling listening (and happens to have the most stunning soundtrack too!)
But the main reason I connected with it so well is because it was so ‘real’. It doesn’t hold any punches in terms of giving a very true account of some of the darker moments associated with CF but it is also beautiful and inspiring - and gives a sense of the incredibly strong community united in the fight against CF.
I promise this is not an advert!🙏I just know it helped me to feel less alone and better prepared in those first few weeks after Arlo’s diagnosis.
I dedicated a few diary entries to it at the time. See here for two of them:
Monday 31st August
Arlo’s age: 4 weeks and 5 days
Today has been a really good day. Arlo has just been an absolute delight. And we have had so much fun just enjoying every moment of him. It’s like he’s suddenly engaging with us loads more - his eyes are really focusing on things, he really is starting to smile and even almost giggle at things. It’s so amazing. We’ve had some tummy time on his play mat, we went for a little walk as a family with him on Martyn’s chest in the carrier, I lay with him on the bed and he was reaching out towards me as well as smiling a little when I tickled his chest, and we did a bath where he nearly fell asleep he was enjoying it so much! It’s just been so lovely and I’ve relished in all the new sides to his personality that are coming out.
I also found a podcast called Straight from the Lungs which is so interesting and I’m totally addicted. It’s not necessarily always easy listening as it covers the good, the bad and the ugly of cystic fibrosis. It’s created by someone who has CF himself and he wanted to create a podcast that really explored what life is like for someone with CF. Especially given how complex a condition it is.
It captures voices from a huge range of different people who all have different connections to cystic fibrosis. It includes input from some very young people with CF, some older people with CF, weight lifters with CF (I’m not kidding!), a man with CF who has climbed Everest, plus family and friends of people with CF. They all talk of their different experiences of CF through the key life stages that all families encounter - such as diagnosis, hospital visits, school and university.
It’s giving me some new perspectives of what our life will be like as a CF family. And it might sound odd but I feel less alone - these voices are from people that have experienced some of the things that we are experiencing now and I am now kind of a part of their world. And that world seems to share in great pain at times but also great hope, optimism, determination and love. It felt like a positive and proactive thing to listen to - there’s something like 18 episodes that were recorded in 2018 - so I am by no means all the way through. But it’s also been a huge comfortAnything to feel more informed, more prepared and to feel ready for what’s to come.
Tomorrow is our first visit to the CF clinic and I am keen for the chance to ask more questions (I have a mega long list!) And to see what the weekly visits will look like. Meet the rest of the CF team. And find out what physio we can do.
All in all, a more positive day. Let’s do this one day at a time.
Wednesday 2nd September
Arlo’s age: 5 weeks
Heard some really useful ways of discussing CF wth Arlo on the podcast I’ve been listening to. I’m always conscious of how we’ll tell Arlo he has CF - and when we’ll first try and explain it to him.
I’m also always conscious that there’ll be times when he’ll be feeling pretty pissed off that he has CF and that his life has these extra ‘things’ that his friends don’t have to worry about.
I’ll have to remember some of the ways that people on this podcast have been addressing these moments for when he’s older and he’s getting sick and tired of all the medication and the treatments.
One of them was that we should think of ourselves like a sports team - he has us (his parents), the doctors, the physios and the dieticians etc. - but he is ultimately the captain. We have to play the match - but he should always feel in control. It’s his ‘rodeo’ (as it were).
Feels kind of daft when I type it.... a bit silly really. But it made me think whilst I was listening to the podcast so I thought I’d log it here!
Also Martyn sent me loads of the cutest and funniest pictures of Arlo using instagram filters - it was so silly and made me laugh. Really cute too cause Arlo is such a babe! Love him!
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