Over the Wall

On a Tuesday afternoon a few weeks ago, I stood in Leeds coach station anxiously watching the bus in front of me. I was waiting for one face. And there suddenly he was, in unfamiliar clothes, tall, dark and with striking eyebrows. I soon realised the last two were from badly-wiped-off face paint (much of which seemed to be all over his trousers), but after four days away my 9-year old did look somehow taller and more confident.

I had been told about Over The Wall Sibling camps ages ago, not long after Pudding was diagnosed but at that point T was too young (the camps are for 8-17 year olds). This year I thought he was ready but that didn’t stop me worrying about him going off without knowing a single other person there. I needn’t have been concerned – the first question he asked me as we walked out the coach station was ‘When’s the next one?’

I could write a whole blog post about this myself but what’s the point? I wasn’t there experiencing it, so I’ll turn this one over to T. (I interviewed him on your behalf!)

A tie-dyed T-shirt and some trousers covered in face-paint

So tell me a bit about camp. What’s it like? It’s fun cos you do lots of different activities. Some outdoor things like climbing and abseiling. We also did indoor activities like picking a partner and going round a course blindfolded.

Was it just physical activities? No, we made a film where I was the evil genius with a side-kick. And we made tie-dye T-shirts and origami. And after most meals we had a disco and did camp songs. My favourite was one where you’d sing the start of it and then challenge someone to ‘shake your booty’.

How was camp organised? We were in different teams and we all had a T-shirt. I was in orange team which was the youngest. And a few of us shared a bedroom. There were grown up volunteers who took us to the activities and cheered us on.

Did the staff and volunteers do things to help you make friends and boost your confidence? Yes, there were trust things like the blindfold course and holding ropes when someone else was climbing. And we did one thing where we had to write nice things on some clothes pegs and then sneak around and try and pin them on someone without them noticing. I was very good at that! Another thing was when we had to draw round our hand and then everyone in our team wrote what they thought about you.

Origami, a little wooden chest with a friendship bracelet in, a toy monkey, and a picture of a hand with lots of nice comments written on.What was the thing you enjoyed most? Climbing because you had to climb up a log onto a rope onto another log and then there was a ladder and a big net and some tyres to get up. It was really cool.

What was the hardest thing you did?  Abseiling! I hated it at the top cos you have to go backwards and it feels like you’re about to plummet to your death. But unlike some of the others I actually did it and it made me a feel a bit braver.

Were you all very sensible and well-behaved all the time? Er…no. Well, sort of. One morning we woke up at 4am but we stayed in bed till a better time.

What would you say to someone who was a bit nervous about going to camp? Don’t worry about going away. Just do it. It’s fun. I will guarantee you’ll like it!

Did you miss us at all? No! I didn’t even miss Pudding cos I was just too busy the whole time having fun!

 

I think you get the picture. He loved it, and even though I was going down with that horrible tummy bug when I picked him up, I couldn’t keep a smile off my face as he talked non-stop about all the things he’d done. And yes, he had a VERY long lie-in the next morning!

Over the Wall run camps for children with serious health challenges, their families and siblings. Applications are now open for 2020 (T is on the reserve list now, as they quite rightly prioritise people who haven’t been before). The camps themselves, and transport to them from various big cities, are free to all campers. Therefore any donations would be very welcome!

 

Today I cry

Today I cry.

This morning I should have got in a taxi to the station with Pudding, caught a train to Manchester and arrived at the hospital. We would have had a lovely greeting from his fan club of nurses and other staff. He would have had a dose of the potentially life-saving drug, just as he has done every four weeks for the last three and a half years. And we’d have whiled away the next four hours with playing and TV in between medical observations.

I am sure that we have made the right decision in withdrawing Pudding from the clinical trial. But that doesn’t stop it being hard. And so I cry.

I cry for the loss of hope. I cry for the loss of his future. 

Pudding with a massive smile, laughing at someone just off camera.

I cry that after three and a half years one of the boys on the trial finally learnt my name and now we won’t see him again.

I cry for the skills he has lost and those he has still to lose.

I cry for the other boys with Hunter Syndrome that never even had the chance of this hope. And I cry for families that have been on trials before that were ended with no choice or input from them.

I cry for the strength I will need to deal with things still to come.

Today I cry. But not for ever.

I don’t have the time. For one thing, it’s production week for our play right now and I’m too busy to spend long in the emotional depths. But also, I think of the reasons that we actually made this decision. One of the huge positives of this choice is to give us more time to enjoy away from the clinical hospital side of things and I am determined not to waste this.

Every time over the last few weeks that I have looked at my gorgeous Pudding, my heart melts even more. And every time I cuddle him, I hold on just a little bit longer. Every minute has become that much more precious.

Less than a week after we saw the consultant for that life-changing discussion I did a talk at Martin House Hospice during their Open Day. I used a talk that I’d written for them on a previous occasion and hadn’t got round to updating it much. Reading through it just before, I knew there was one paragraph that I would struggle to get out without being too emotional and that’s because it had taken on a particular poignancy since I had written it months before.

And most of all Martin House has taught me that a hospice isn’t just a place about dying. Coming here is definitely about having the space and energy to live life to the full and celebrate what we have. And whether we have days, weeks, months or years to spend with our life-limited children, it’s important that we spend them living, not dying.’

And that is what I intend to do.