We’ve talked about our visits to Helen House before and how amazing the whole place is, they picked us up out of a dark deep hole in December and got us on our feet again so to be back so soon for three nights of respite was great as this time it was very different. All three of us are in a better place and were really able to enjoy being there. As soon as we got in Toby was off crawling towards the sensory room and turning his charm onto any within a few feet.
We also took the opportunity to take a step back and try and get a proper rest, the care team are fabulous with Toby so we let them really take the lead on his care while we enjoyed a little freedom. We’d previously arranged for Jim & Ruth to come down to Oxford so we met up and had a lovely dinner with great food and wine and even better company, it felt incredible to be ‘normal’ for the night, a glass of wine to many safe in the knowledge that someone else was looking out for Toby all night. We didn’t even lay our clothes out, as we do every night, ready to step into them at a moments notice, it’s the little things!
After a lovely breakfast in a local cafe we invited Jim & Ruth into Helen House to see this magical place that has given us so much and to catch up with Toby.
Ruth’s far more eloquent than I am and she’s put this together for us.
“You know how some people just manage to create a truly welcoming environment for kids? How sometimes, as a parent, you arrive to visit someone and they have the perfect toys that your kids love to play with, arranged in such a way that you know they’re totally welcome to join in, in a place that’s feels clean and safe, but where you just know that it your kid gets too close to the paintwork with a felt tip, no-one’s going to have a hissy fit. Or maybe you remember visiting favourite relatives as a kid yourself, and knowing that there was an awesome box of buttons/dolls house/stationery cupboard that you were totally allowed to empty all over the living room floor. Well that was the feeling I had from Helen House.
It was pretty unexpected. Tim and Kim had said all sorts of positive things about the place and I knew that they did amazing work, but it’s hard to shake off the preconception of it being a sad place with very sick children and traumatised families. But the building is light and airy, the kids bedrooms (well equipped with medical stuff, but definitely bedrooms) are right in the heart of the action and there’s a cosy dining room where everyone eats together round big tables. Everything is incredibly carefully thought through. I don’t know how they manage to make what is clearly a high hygiene catering facility look as warm and accessible as your mate’s kitchen, but they have obviously put tons of effort into making it that way. It’s also full of cool stuff to play with, great spaces to crawl in and an interactive projected image on the floor which the grown ups couldn’t resist and neither could the trying-to-be-cool visiting school kids once we had shown them what it did!
We’d had a lovely evening out the night before with Tim and Kim, and wanted to see Toby and his home-from-home. We hadn’t seen him for a while, so it was brilliant to see that he still looks exactly like Tim, but at least twice as tall (as his previous self, not twice as tall as Tim…that would be silly) with a determined energy directed towards getting the absolute best out of all the cool toys in front of him. The whole environment was amazingly chilled out, and that seemed to us to be part of the brilliance of the place. No-one seemed in any kind of a hurry, there didn’t seem to be scheduled meetings, people were lingering over tea and coffee, sauntering rather than striding. There must have been office space somewhere in the building, but that’s not what you see. There’s just an over-riding sense that here it doesn’t have to be a struggle…you can let go and drift a bit. If you have things you want to discuss with the doctors, you can catch them for a coffee at some point. And if you forget to mention something then, you can catch them again later. I imagine it must be a real gear change for medical professionals used to working quickly and efficiently to do their best by their many many patients, to realise that just slowing down, seeing fewer patients (I was amazed to hear that most of the time there are just 5 kids there) but really spending time understanding them, observing them, being available for all kinds of conversation makes a massive impact. Tim and Kim were saying that through their usual interactions with the healthcare system, they are never asked how they are coping, whether they are getting enough sleep etc etc, but at Helen House they seem to really understand that when a child has long term health problems, the whole family needs help and support.
It was emotional though, of course it was. All the parents there looked as though life was tough and although they were having a lovely break from the intensity of daily life, they knew they were going back there. Tim and Kim (as always) were as relentlessly positive as they were open and honest. They’ve battled their way to accessing this little nirvana and obviously find it a crucial part of sustaining themselves as well as accessing different perspectives on Toby’s condition and assistance with getting the right contacts within the health service. My visit has really opened my eyes to just how important a hospice (there, I’ve said the H word) can be, and how badly misunderstood. I just hope that all the people who need that kind of support know about them, and can access them. I suspect that isn’t always the case.
As we were leaving, Toby started to wave goodbye, then had a little wobble. There was a sonic boom as Kim covered the 5m to his side, and lots of reassurance from Toby’s carer. It’s not fair that Toby has Dravet’s. It’s not fair that Tim and Kim have to cope with all that they do. But they are truly amazing in finding the people and places that are going to help them all, and Helen House definitely ticks all the boxes.”
We are very lucky that friends and family can visit us and come and see that Helen House is such a positive, welcoming and fun place to be, the word Hospice is a scary one, we were terrified to go to one but as Ruth has said, it’s a very poorly understood word, I hope her words help to describe what an incredible place it is.
Helen & Douglas House run purely on voluntary donations, if you would like to donate please click here, if you have a certain skill or business and you might be able to help them in someway please do get in contact with them as they’re always on the look out for new supporters.