Ty Hafan

#family friday

a parent's story

Our annual Tŷ Hafan Ball took place a fortnight ago and it was a very special evening highlighted by fine dining, an incredible atmosphere and some serious fundraising.

Tŷ Hafan has touched so many lives over the years, but hearing the stories of Tŷ Hafan families is always hugely humbling and a great reminder of why the charity exists.

Jackie Fears, along with her husband Paul, was the special guest speaker on the evening and what she had to say was a highlight for everyone in attendance. Jackie has kindly allowed us to share her words in this week’s Family Friday, so we have left it largely untouched.

Good Evening Ladies and Gentleman.

Firstly, I’d like to Thank Tŷ Hafan for inviting us here this evening and asking us to share some of our experiences with you.

Now when I told our friends that both of us were going to speak at the Tŷ Hafan Ball, they asked me, ‘How on earth are you going to get a word in edgeways?’ I simply replied, ‘By going first!’

For those of you who don’t know us, I am Jackie and this is Paul and we are the proud parents of three amazing children; Greg, who 27, Tom, 24 and Meg, 20. Our eldest Greg, was born with complex medical needs and, at the age of two, was diagnosed with Pulmonary Hypertension. We were given the devastating prognosis of just five years.

Thankfully, the years past and Greg remained relatively well, but it was at the age of 15 that he ran into trouble. We began to struggle as a family with the illness that had turned our lives upside down. It was Tracy Jones (now Head of Head of Community Services and Partnerships) who was then Greg’s social worker who mentioned Tŷ Hafan and asked us if we’d ever considered going there.

So, it was with much trepidation that we visited in Sept 2006. I remember sitting drinking a cup of tea and chatting with Shirley from Family Services and looking out of the window into the garden and I saw two young boys in their wheelchairs chasing two members of the care team having a water fight. I knew then that this was the place for us. Our first stay was in November 2006 and it was then that we all put each of our handprints on the wall. The Fears Family had arrived.

We had four amazing years coming and staying at the hospice and have so many fantastic memories. I would often say to Paul that I preferred staying at Tŷ Hafan to going on holiday but it wasn’t until I was talking to Shirley from FS that I worked out why. Not only did it mean I had more time with Tom and Meg, it also allowed me to be just Greg’s Mum for a while – I could take off my carer’s hat and hand over all the caring responsibilities to the wonderful and capable nursing staff and care team. And I revelled in being just a Mum. This is one of my favourite photos of us at Tŷ Hafan as it portrays the fun and how much we were able to relax. It was actually taken on the last day of our last stay in July 2010 the day before Greg’s 19th birthday.

Leaving Tŷ Hafan was so hard and extremely daunting. It was something we hadn’t planned for, never daring to hope that Greg would still be with us. To help ourselves, Paul and I put together this book, ‘Adventures in Wonderland’ and it captures perfectly the memories that Tŷ Hafan gave us.

But what about life after Transition? What happens to families? Obviously, each family is unique and needs are different and care is very dependent on where you live. BUT, one thing remains constant; once those handprints are on the wall, you are always a Tŷ Hafan family.

As the years passed, our visits varied – usually Christmas for the panto, open days, sibling days or just if we needed it days. As a family, we continued to support through fundraising or volunteering and Tŷ Hafan continued to involve us by inviting us to various events.

However, in the last few months of 2017, Greg’s health became unstable again and we feared the worst. In January of this year, I decided to give up my P/T job which was an incredibly difficult decision, but I knew that the stress of worrying if Greg would be well enough for me to go to work or, worse still, if anything happened to him if I wasn’t there, became too much.

What I didn’t expect and what caught me by surprise was how quickly I lost my confidence. Everything outside of our usual activities and environment took me well out of my comfort zone.

So, when we were invited earlier this year to an event organised collaboratively by Tŷ Hafan and the Museum of Wales, I’ll be honest with you, I didn’t really want to go. It was a day designed to make the Arts accessible and fun for families such as ours. It turned out to be a fantastic day; Greg had so much fun and I hadn’t smiled so much in ages. So yes, it was a big success in many ways and for me I met up with families that I hadn’t seen in a long time and it was only then that I realised how much I missed it and how much I needed it.

Soon after came the big surprise of this year. As a Thank you for all the support we’d given Tŷ Hafan over the years, we were asked if we’d like to represent all Tŷ Hafan families at a garden party hosted by Prince Charles at Buckingham Palace to celebrate his 70th birthday year attended by other charities of which he is Patron. What an honour! But, even though Greg’s health had been more stable of late, I remember looking at Paul’s excited face as he was telling me and all I was thinking was: “We can’t do this, what if it’s too much for Greg, what if it’s too much for me.”

My mind was working overtime.

But, after careful planning, we went and we made it a short break, staying in Kingston-upon-Thames where Paul and I met 34 years ago in University and we made it a trip down memory lane alongside a privileged day out at Buckingham Palace. And, oh, how our special children keep our feet well and truly on the ground.

For Greg, it was a lovely afternoon in someone’s big back garden, eating yummy cakes and unexpectedly seeing a special friend from Tŷ Hafan. I will be frank with you all, Greg was far more impressed with seeing Gareth who used to look after him (and who coincidentally was wearing the same shoes!) than shaking hands with the lovely lady in the nice hat (Camilla!).

The success of those three days away helped me realise again the importance of making the most of every single day and for that I cannot Thank Tŷ Hafan enough.

And I’ve realised this year that those handprints are there for a reason. Whatever happens, we are and always will be a Tŷ Hafan family and I can pick up the phone anytime if need be and not be afraid to ask for help. Just like I did recently when I called Tracy Jones for support. All I had to say was “Greg is fine but I am not,” and Tracy came to visit. She then arranged for us to come to Tŷ Hafan, so it was that only three days ago, I visited Tŷ Hafan with Greg and my daughter Meg. What a welcome we had and how lovely it was to be amongst people who understand.

Finally, I’d like to close by telling you all that the once little girl who used to follow the nurses and care team around adoringly saying how she’d like to work at Tŷ Hafan one day is now 20, in her 2nd year at University studying Paediatric Nursing and just starting a placement in a Special Care Baby Unit.

Now that’s a legacy.