Helen House, our journey.
Toby was around nine months old when we were referred to Helen House, he was having weekly seizures lasting over an hour, we were having almost daily ambulances to our house and ending up in hospital weekly for days at a time. It was terrifying, physically exhausting, and emotionally draining, and that was on top of being first time parents.
Arriving at Helen House with our little baby we felt numb, shell shocked and uncertain as to why we were there. Our wonderful Health Visitor Lynne had made the referral assuring us that they could help us. We had no idea what to expect.
Being welcomed into a warm, bright and light space by smiling faces immediately put us at ease, there was a sense of calm and quiet but overall it felt safe. We were shown around, struggling to take everything in then met Dr Hannah.
Finally! Someone who understood!
Hannah took time to listen to us explain about Toby and took it all in and then it changed, she started asking how we were, really, how we were.
We told her everything, how tired, worried, upset, concerned and scared we were and she listened and understood, it was at that point we knew Helen House was special.
We went back a few weeks later for our first stay, it was terrifying.
No one knows our little boy like we do, no one can look after him like we do and the team really under understood this. We spent a lot of time with Toby talking to the care team and that’s where the healing began.
We just ate cake, drank tea and talked about life, Toby and what it meant to us. The whole team were really caring, friendly and warm, they wanted to know our story and to really get to know us all. For the last seven months we’d spent so much time in hospitals and with doctors and all the focus was on Toby and the immediate future, this was a very different experience.
That evening we were confronted with our next challenge, we were to sleep upstairs, Toby downstairs. We did have the option for one of us to sleep in the room with him, however we took the agonising decision to leave him with the team and to sleep in the family accommodation only metres away.
Toby was fine, he was watched on a monitor, fed, comforted and slept.
We slept too, like we hadn’t for months. No monitors, just sleep.
We went back few weeks later and again had a couple of nights of sleep, it was really helping. It was becoming our safe haven.
By our 3rd visit we were ready for our next challenge, could we leave Helen House without Toby?
The team were brilliant, they gently pushed us but in a way they knew wouldn’t upset us, we were still tired and exhausted yet they read the situation perfectly. We went for breakfast less than a mile away.
All the time we were thinking what happens when we get a call saying he’s seizing and they’ve called an ambulance, how would we get back to Helen House quickly, would a bus work? Taxi? Should we just run?
We didn’t get a call.
We got back less than two hours later, Toby was happy, smiling and clearly very enjoying time with his new playmates in a place that is paradise for kids.
We spent a lot of time with doctors, most of it sitting on the floor in a relaxed way talking about everything, from our mental health to Toby’s seizures, they offered advice on it all.
Doctors Renee and Peter turned Toby’s medical care around. It had all gone wrong, his drugs were changed wildly and we felt there was no hope and that we’d been written off by our doctors who didn’t know what else to do. We were spiralling out of control. These two gave us hours of their time, helped form a plan and influenced making it happen. The time, care and attention is one of the many reasons Helen House is so unique and special. This simply wouldn’t have happened otherwise.
We struggled along at home, not sleeping, adrenaline rushing through our bodies becoming more and more exhausted.
We tried to get into Helen House every six weeks for much needed rest, the last week before a visit was torture. We limped along, desperate for some rest.
Throughout all of this the care team became our friends, our arrival was like meeting an old friend off the train and it gave us so much pleasure to know that Toby wasn’t just going to be looked after, he was going to be loved.
Certain members of the team, in particular, got to know us and Toby really well, matching his energy and temperament perfectly, they learnt how to play with him, how to get the biggest smiles and giggles, when to put him down for a rest and how to manage his seizures best.
When Toby was eighteen months old he had a three-hour seizure and was transferred to Intensive Care on life support in Southampton.
It was a surreal experience, in many respects it was hard to mentally process what happened, but I do remember getting messages of support from members of team at Helen House which meant so much to us.
Our visits to Helen House continued, we spent so much time really getting to know various people it was lovely, they became part of our family and all for different reasons, the calm way in which they operate, the fun they bring, the chaos of messy play, the reading of Toby and what he needs, so many people showed such concern and professional understanding that it became both easier and harder for us to step away.
Our visits had become routine, resting, chatting and drinking tea but slowly, as they recognised the change in us the team encouraged us to get out and enjoy ourselves.
We went for dinners, cinema, shopping, eye tests and then finally, a night away. We had fleeting moments of being us again, not sure carers of a very poorly boy.
It was only because of the love for Toby that the care team showed us that this was possible. We weren’t leaving him with baby sitters, careers, nurses or in a hospice, he was with his friends.
We rarely spend much time in Helen House now as we know what does us good, getting away to somewhere relaxing and quiet where we can have a good walk, some fresh air, a drink (without worrying about listening to the monitor and being on high alert) and enjoy a nice meal then sleep. It gives us enough energy to get back to a level where we can begin to feel normal, it’s never enough to properly recharge the batteries but it gives us a huge boost.
Toby is now four but developmentally very delayed. The team have known him for years now and really understand his moods, motivation and skills and will do activities that suit him and yet challenge him where possible. All the children at Helen House get the opportunity to do a wide range of activities, the team carefully pick what is most suitable and spend all the time needed for that child to have fun. Toby is very repetitive and likes what he knows, some people spend hours with him doing this whilst others nudge him to try other things, we love that he’s challenged within his abilities by such knowledgeable and caring people.
We’re incredibly proud of Helen House and the care they give us and the other families that visit. It’s an inspirational place where we’ve brought friends and family to see first hand how amazing it is.
The building and facilities are great but it’s the people that make Helen House, without their professional, caring, fun faces it wouldn’t be the same.
Both physically and emotionally the team at Helen House have lifted us as parents off the floor, helping us to recover from what life has thrown at us. The care for Toby is second to none but the real impact is on us. Four years on we’ve adjusted to our life and thanks to the support of Helen House are doing all we can for Toby at home, both working part-time, have a social life and have the energy to try and help others.
We would not be where we are if it wasn’t for Helen House and the team that bring it to life.