My Changing Perspective on Charities

Sarah Kay by Sarah Kay Additional Needs

Sarah Kay

Sarah Kay

An honest (and hopefully positive!) chat through the rollercoaster journey we have found ourselves on; hopefully to raise awareness of HIE and supp...

When I was young, which now feels like I’m going back a loooong way, I used to love doing stuff for charity. Whether it was bake sales at Brownies, selling raffle tickets at school, doing midnight wanders with work, or volunteering in my spare time, there was always something to get involved in. I loved it.

The feeling that you had done your bit and made a difference was great. I knew the money raised or time donated went to a good cause, but I didn’t really think too far beyond that.

But then, suddenly, there came a time when we were offered the support of a charity. The tables had turned!

Heidi was a few weeks old. We hadn’t yet got her home from hospital, and one of our consultants offered to refer us to The Rainbow Trust. I had heard of them before, as we’d done a fundraiser at work for them, and they did fantastic work. Their tagline, “supporting families with a seriously ill child”. (We were also referred to our local hospice, the fantastic Francis House, which unfortunately I had the same reaction to!).

Now, here’s the thing, my brain couldn’t process it – why would we be referred to a charity for seriously ill children? (Heidi was seriously ill, I just hadn’t accepted that yet). I almost instantly decided that I didn’t want their help. I didn’t want to be referred to a charity. I didn’t want pity. I didn’t want people to feel sorry for us. I could cope. I felt like I had a point to prove.

Of course, with the benefit of hindsight, it wasn’t the right decision to turn them away (to be fair though, I was seriously lacking in sleep, with post-pregnancy hormones still whizzing about and pretty much crying if someone said as much as “hello” to me.).

I reluctantly let the referral take place, and a lovely lady came to visit us once we were home with Heidi. I still didn’t feel like it was really for us though. I felt guilty taking up their valuable resources when there were other families who could make much better use of them. So, after a little while things fizzled out (probably subconsciously encouraged by me) and I was fine with that.

Fast forward a few months and the wonderful Reubens Retreat came on to our radar – but again, I still hadn’t learned! I went along to a Mum’s Pamper Day they had organised, for Special Needs Mums. It should have been wonderfully relaxing, but for me it was far from it.

Now I’m not a great chill-out person anyway, but all I kept thinking about was if Heidi was ok at home. She was with her Dad and perfectly well looked after, but I had terrible separation anxiety for a while, and I just wanted to rush back. I didn’t get follow up with Reubens after that, I still didn’t feel ready. I wasn’t in denial about Heidi’s diagnosis, I just, for some reason, didn’t feel like I fitted in (and that’s by no means any reflection on the people I met as they were super nice).

Thankfully though Reubens Retreat didn’t give up on me. A few years later they welcomed me with open arms (ah, the times pre-covid when we could give, and get, big hugs!) when I finally felt it was right for us to go along to one of their family events.

It was a Mexican Fiesta theme, and I knew a couple of other HIE mums who were going to be there. I worried that I was going to burst in to tears when I walked in (which I now know wouldn’t have been a problem at all, as emotions are always understood there!), but it was just a lovely atmosphere. Within five minutes Heidi had a false moustache and a sombrero on, and one of the fab volunteers had brought me and Steve a much-welcomed cup of coffee. Everyone we spoke to made us feel really welcome, and we were so well looked after, it was such a lovely event.

This was what I had been missing out on – for years! I kind of kicked myself for being so silly about it in the first place, but then realized it has to be in your own time, and when that is will be different for everyone.

What has changed my perspective even more is setting up our own charity. Until Heidi was born, I had never heard of HIE. I didn’t know anything about it, let alone how to come to terms with it. Thankfully I found a brilliant parent group on Facebook, where mums and dads, further on on their journey, were always there with a listening ear or words of advice. I’m not exaggerating when I say I dread to think where I would be if it weren’t for them.

As things settled with Heidi, and the years passed, I kept coming back to the thought of what happens to those families who don’t have Facebook, who don’t find support, or are trying to go it alone?

With the backing of family and friends, a bit of good luck and a “let’s give it a go” mentality (winging it is very much in our nature!) we set up Peeps, named after our very own Heidi-Peeps, a nickname she was given by a friend in hospital, and dedicated to supporting those in the UK affected by HIE.

We are registered as a charity. For the purpose things such as grant applications, bank account and constitution, we are classed as a charity.  I don’t really focus on what we’re called though and hope that people aren’t put off contacting us because we are a charity, like I was in the early days with The Rainbow Trust.

I’d like to think we are an extension of a person’s support network, a gentle ear when they need to talk, a safe space to voice fears of concerns, a group of like-minded people who totally “get it” and will have your back every day of the week.

We certainly don’t pity our families or feel sorry for them – they are some of the most resilient, amazing people we know, who also happen to have gorgeous kiddies! It's a privilege to be involved in their journey in some small way, and if we can achieve just a fraction of what Reubens Retreat and The Rainbow Trust do, then we’ll be more than happy.

We’re also blown away by the generosity of people supporting us (and other charities), with donations, skills and time. Seeing the charity form the other side makes you appreciate just how many good people there are out there.

So yes, my perspective of charities has changed. I have learned a lot, I have seen the great work they do (big shout out too to Ronald McDonald House Charities who looked after us, like they do so many other families, during a hospital stay), the communities they bring together, and the difference they can make in an otherwise tricky world.


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