Creativity, Cystic Fibrosis, Family, Photos, Self

What’s going on at RRandJ Designs? #art #createlongridge #extraordianrywomen

There has been a lot going on over here at RRandJ Designs, but just as a quick reminder don't forget my nieces and nephews, AKA the FAB FIVE have been getting ready for there awesome adventure climbing Snowden to raise money for the Cystic Fibrosis Trust - please support there efforts HERE! In other news,… Continue reading What’s going on at RRandJ Designs? #art #createlongridge #extraordianrywomen

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Cystic Fibrosis, Family, Photos

The Fab Five Climb Snowden for #cftrustuk

I'd like to draw your attention to my amazing nieces and nephew's -AKA the Fab Five!- who, with the help of my family, are planning an awesome adventure in August 2018! Erin age 13, Sofia and Mark aged 10, Keyaan 9 and Maxwell 4, are climbing Snowden to raise money for the charity The Cystic… Continue reading The Fab Five Climb Snowden for #cftrustuk

Cystic Fibrosis, Self

Self care isn’t about bath bombs

This is an updated version of my previous post "Self Care, Why it's Important", I am learning everyday about what it means to have self acceptance and what privilege I have, so I felt like I needed to write a more recent perspective on the issue of self care. Self care Myths Self care has… Continue reading Self care isn’t about bath bombs

Cystic Fibrosis, Family, Photos, Self

Joseph Graduates Nursery

The day has finally arrived, Joseph's last day at nursery school. We have the six weeks summer holiday and then my little baby boy is going to "big boy" school. I didn't know how I was going to feel on this day. Although in general Joseph has enjoyed his time at nursery we've had our… Continue reading Joseph Graduates Nursery

Cystic Fibrosis

Orkambi Protests #cysticfibrosis #orkambinow #helpusbreathebeyond30

Today, you may have seen on social media, that the Cystic Fibrosis Trust have organised several nationwide protests for the following reason: We are calling urgently on Orkambi’s manufacturer Vertex and governments across the UK to agree on an affordable price that can make the life-changing drug immediately available to those who so desperately need… Continue reading Orkambi Protests #cysticfibrosis #orkambinow #helpusbreathebeyond30

Cystic Fibrosis, Self

Self Esteem and Advocacy

I often believe that every one secretly hates me. It happens when I take Joseph to nursery and I have to speak to one of the nursery staff. I have a ball of anxiety in my stomach because I believe they are all sneering at me behind my back or just waiting to whisper about… Continue reading Self Esteem and Advocacy

Cystic Fibrosis, Family

Recommended read! “A Song for Tomorrow” #cysticfibrosis #alicemartineau #alicepeterson

I have gotten back into reading fiction books recently. I've dipped in and out of fiction books for the past few years, but have mainly been engrossed in non fiction. Somehow this month I'm now on my fourth fiction book, this may not seem a lot to some of you, I know before I had… Continue reading Recommended read! “A Song for Tomorrow” #cysticfibrosis #alicemartineau #alicepeterson

Cystic Fibrosis, Family, Food

food food terrifying food #foodaversions #cysticfibrosis #GORD

Food, food, terrifying food Food is a touchy subject around here. This is a difficult post to write. But I think it needs to be written as there are other parents going through similar things with there children and they may find value in this post. As a parent, when you say your child has… Continue reading food food terrifying food #foodaversions #cysticfibrosis #GORD

cystic fibrosis, art, 65roses
Creativity, Cystic Fibrosis, Self

The Elephant in the room #cf

The Elephant in the room He's been there since the day you were born but we were unaware of him until we received an unsolicited knock on the door. He must have slipped in with those nurses while we were off guard Ten foot tall, grey and looming. An unwanted gift is no gift at… Continue reading The Elephant in the room #cf