Tŷ Hafan invited my wife, Jackie, and I to speak at their 2018 Big Top Ball at The Exchange Hotel in Cardiff. Tŷ Hafan is one of the UK’s leading paediatric palliative care charities and offers care to children and support for their families, throughout Wales. After my wife had spoken about how Tŷ Hafan has helped us as a family, I explained how the Tŷ Hafan Dads Group, headed up by Gareth Jenkins, has been an important source of comfort and support.
“As you have heard, Tŷ Hafan has played a huge part in our family’s life for over 12 years. Greg was actually involved in presenting the birthday cake on Tŷ Hafan’s 10th birthday. In the photo you can see Greg with Tŷ Hafan’s founder Suzanne Goodall.
Leaving Tŷ Hafan when Greg was 19 was tough. To be honest, I was not sure whether we would have any further contact at all. I was very much mistaken. I am not sure if you know, but Tŷ Hafan has something that is pretty unique. It is called the Tŷ Hafan Dads Group. And it was through the Dads group that I remained connected.
The Tŷ Hafan Dads Group was founded by Paul and Dan, two play therapists, around 10 years ago. I was fortunate to be involved right at the start. With the care team being dominated by women, Paul and Dan felt that a group for the men would be good. This group would provide an opportunity for Dads to meet. It was like a special club. One that you never wanted to join, but once a member, you met some amazing people.
It may be a generalisation, but men are not great at communicating their feelings. With the Dads Group, we suddenly had a private and safe place to talk to other blokes in similar situations.
The Tŷ Hafan Dads Group really blossomed when Gareth Jenkins was appointed. They had recognised some of the benefits, but it needed someone to lead the way. As Jackie mentioned, Gareth had been a member of the care team and looked after Greg. In fact, he had been Greg’s colouring buddy!
I must admit I tended to watch the group from afar, only occasionally getting involved. Life changed for us in late 2013 when we set up our photography business. One of the first things we did was offer our services to Tŷ Hafan and I’ve been helping out photographing families and events ever since. At the same time, the Dads Group was booming and an increasing number of Dads were getting involved. Through the photography I was meeting up with families and started to get more involved with the Dads group.
I started playing golf with fellow Dads at events organised to raise funds for Tŷ Hafan. My Dad even came along to one held at the Vale Resort in Hensol. You would spend 4 or 5 hours on the course when maybe 5 to 10 minutes was spent talking about the difficult stuff. But that’s all that was needed. As time passed, I could see that there was something very special developing.
Then, in 2016, Gareth and I came up with the idea of a ‘Dads Bare All’ calendar. With inspiration from the original ‘Calendar Girls’, we wanted to have a calendar with Dads modelling naked. In this instance, the nakedness was not for sensationalism but to portray a specific and important message. Every Dad in those photos was baring everything and that included his emotions. We wanted to highlight how many Dads emotionally deal with our situations differently to Mums. The way we handle things isn’t wrong, it’s just different. With the calendar, we were exposing our inner feelings and telling the world that we hurt, that we are in pain.
We also struggle to come to terms with losing a son or a daughter.
Many men, including me, are not good at showing or expressing emotion. You are brought up to consider yourself as the protector of the family. And when the family is breaking down around you, you are expected to be the strong one, holding everything together. I am not saying that this is right, but it is how many fathers feel.
The calendar also achieved something else. It brought together Dads who had never met each other. I remember one session down on the beach where two Dads were standing completely naked holding their bikes whilst Gareth and I were sorting out the lights. Whilst baring all to the world, they were having a chat about cycle routes in the Vale of Glamorgan. Two guys who had never met before, naked as the day they were born, chatting about cycling. Since the calendar, the Dads group has blossomed. We have a very active private Facebook page where there is a lot of banter, but also a lot of shared advice and support.
Then last year, Gareth called and asked if I wanted to climb 5 mountains in 55 hours – the new and Tŷ Hafan inspired #5in55 challenge. And when Gareth asks us to do something for Tŷ Hafan, there is only one answer. I must admit I thought we’d be lucky to get a team of 8 but in the end a 16-man team made up of Dads, Uncles, Staff and a Sponsor took on the challenge. We also had 2 staff and 2 volunteers driving and cooking for us. Due to family and work commitments, the first time all 20 people met was on the Wednesday morning at 6am on the day we were driving up to Scotland. Over the next 4 days, I spent every second with 19 amazing people. We developed a connection that I do not think will ever be broken. The camaraderie was like nothing I have experienced. We walked for 22 hours and 26 minutes, covering 38 miles, and climbing 4666m, which is half the height of Everest.
I still tingle when I think of the moment when all 16 men stood on the top of Cadair Idris with our arms linked for a minute’s silence in respect for our families and all the families who have been and are being cared for by Tŷ Hafan. We all get asked why we took on the challenge. The feeling of achievement was incredible, but that is not the main reason. As Dads with children and young adults who had or have life-limiting illnesses, we often feel helpless. We cannot solve the problem. We cannot put it right. The life-limiting illness will win. It is just a matter of time. And, as a Dad and the main protector of the family, aren’t you meant to stop your family feeling pain? But you can’t.
Walking 5 mountains in 55 hours gave us a sense of purpose. It was something we had control over. As a group we wanted to raise the profile of Tŷ Hafan. Shout out to the world and tell them how this amazing hospice helped us. And if there was the opportunity of raising some money at the same time, then fantastic! The 5in55 challenge allowed us to do something to help our families and families like ours.
And men like being able to take action.
As many of you may already know, the challenge took on a life of its own. We’ve been interviewed on BBC Wales and ITV television and radio. There has been coverage in the UK national press. Tŷ Hafan has even featured in news stories in the USA. And we raised over £40,000. In fact, we’ve even been nominated as 1 of 3 fundraising teams of the year by Just Giving and a large group of us are going to London for the awards ceremony at the end of November. However, despite all that PR and fundraising, the most special part of the 5in55 challenge is the bond created between 20 guys.
In a recent interview for BBC Wales, I said that the families of children and young people who had or have life-limiting illnesses all see the world through unique coloured glasses. For us, the view of the world is different. And without wearing those glasses, it is impossible to fully understand what it is like.
However, through Tŷ Hafan and the Dads Group, we have the chance to be with people who do understand. People who do wear those special coloured glasses.