Hope was a huge part of Josh’s story and is still a huge part of ours
Can you tell us about Josh and what he was like?
Josh had the best sense of humour and the most beautiful smile. He also had a laugh that was contagious. Josh had two sisters and one brother and he was the oldest. When they were all together he’d be the first to start giggling and the last to stop.
Josh was brave, caring, loving and funny. Once you met him, you’d become his new best mate. He had a huge sense of adventure, a busy mind and a warm heart.
Josh was the most perfect baby; I was so young when I had him and in some ways we grew up together. For a long time it was just me and Josh against the world.
Our holidays to Pollensa in Majorca were his favourite; he loved to travel and getting there was the part he loved. He’d be most excited about what new sticker book and snacks he’d have for the plane!
Josh always had a story to tell and an adventure to plan, and even as he grew up this didn’t change. Josh gave the best hugs – that makes me smile the most.
Why is it important to you to share Josh’s story?
I know that everybody’s story is different, and I also know that everybody has a different perspective. But I know how scared and frightened Josh felt at times – I did too. You feel that you’re the only person who is going through these battles.
Even after Josh passed away, it was a shock to a lot of people. To look at Josh you’d know that he was not as well as he had been, but not that he was at the end of his journey. Not long before he passed away, he told me: “Mum, I can’t sit in bed and wait to die” and he was right, he couldn’t. How brave is that.
Josh lived a full life but not without challenges. We had the most difficult conversations over his treatment and I know how hard it was for him to do the most simple tasks as his health declined.
I want others to know that there’s always hope, hope was a huge part of Josh’s story and it’s still a huge part of ours. I want others to know about Josh; his story deserves to be told.
What do you wish more people understood about cystic fibrosis?
That CF affects more than your lungs and it’s far more than chest infections.
I wish people understood the emotional impact that CF has, the battle is so much more than physical.
I wish people knew that there is still no cure, and that 10% of the CF population cannot access modulators. Josh was a part of that 10%.
I wish that people understood how life-limiting CF can be, and just how cruel the condition is. As your body deteriorates and fails you, your mind doesn’t.
How has your life changed since his death?
In the two years since Josh passed away the space that he left in our lives just seems to get bigger.
As Josh’s health deteriorated, I spent more time supporting him with the things he could no longer do independently. We went back to spending so much time together just like when he was younger. I felt lost after he’d gone.
Life carried on, I see Josh in his siblings and his nephew. They all have his courage and he’s left us with a lot.
Some days it feels like he’s just off on an adventure somewhere and that he’ll be back with a story to tell, some days it doesn’t. Those days are hard, but I’ve learnt that it’s okay to not feel okay and to take one step at a time
Grief is a part of my life now. After seeing what Josh went through at the end of his life, how brave he was and how strong he had to be, I feel like it’s my turn to be brave now for his sisters and brother and I promised Josh that I would.
What has grief looked like for you over time and are there things that have helped you navigate the hardest moments?
I couldn’t begin to label the feelings that are with me every single day. Josh not being here is the last thing I think of at night, and the first thought when I wake up. It’s like I lose him each day all over again.
As a mum you wonder could you have done more, I guess that’s a normal emotion and something that I’ll always question.
Losing a child is something that no amount of information can prepare you for even when you know that it’s going to happen. No mum can prepare a bag for when you’re called to the hospital when it’s time. What do you pack? I learned that it actually didn’t matter as long as I was there.
When the time did come, Josh had been in hospital for a while and he called me in the night and told me he needed me. If he ever needed to he’d call, and when he did, I knew he was unwell. It didn’t matter how old he was this is how it’s always been. I didn’t leave for two weeks and then I had to leave without him. Where do you go from there?
Our world had been loud and busy and all of a sudden it was really quiet. After caring for someone stops, you have so much time that you just don’t know what to do with. I searched for some type of support and for anyone who had any sort of idea of what we had just been through. I just wanted some hope. I was supporting my other children and worried so much about them too, it’s heartbreaking to see them miss him.
Josh’s CF nurses are still in touch and they were able to support in the early days – they were a godsend.
When I was searching for support, I was in contact with Cystic Fibrosis Trust’s In Memory & Legacy Officer, Susan. She was always there for me; she helped me to share Josh’s story and she fully understood how important that was for me. She’s really special.
A year into my grief, I accessed support from a national grief support charity. I don’t think my councillor could have been better matched. I was so stuck at this point my grief was so heavy and the world had just carried on. I learned some really helpful and special ways to manage how I was feeling. I wanted to be fully present for my other children and these sessions helped me to understand how I was feeling, and gave me a space to talk. When grief feels really heavy, we go to the beach no matter what the weather. I love seeing that there’s a whole world out there – it makes my worries seem smaller.
Tell us about your work with our Helpline?
I shared my experience as part of Cystic Fibrosis Trust’s partnership with Marie Curie, which offers grief support. I really wanted to help in any way I could if it meant that there was support for anyone who’d been through a loss similar to us. I thought if I shared my experience and what I needed at the time, that it might save another parent having to explain. At the time you don’t know how to explain.
How do you honour Josh's memory today?
By never giving up hope. We changed the things we hoped for throughout his life: transplant, modulator therapy, right up until the end of his life where I hoped he’d be peaceful and calm.
I’m hopeful that there will be a cure for CF, that the 10% get their chance, and I know that Josh would be hopeful for that too
I honour his memory by sharing his story, making sure that even after he passed away people still got to meet him in his memory.
Josh was so much more than his CF, but it was a huge part of his life. It still is for us and we hope to carry on fundraising in Josh’s name – he’d absolutely love that
Cystic Fibrosis Trust has helped with any questions, ideas and with the legacy that we wanted to create. I’ve had so much support from people that I’ve never even met. Our journey supporting the Trust after Josh had passed was something that we never thought of. This journey started at the saddest and hardest time in our lives, but we’re still hopeful.
We miss Josh dearly; we talk about him all of the time. We have so many special memories. He was strong, brave and a warrior.
Thank you to Amy for sharing Josh’s story.
Find out more about the support available to help you cope with the loss of a loved one with cystic fibrosis (CF).
We understand the importance of remembering and celebrating the lives of everyone with cystic fibrosis (CF), including those who are no longer with us. This CF Week (8–14 June) and throughout June, share a memory, photo or message on our Dedication page, to remember and celebrate your loved one’s life.