The Hard Part of Working so Closely with Sick or Disabled Children.
Kaitlyn Smith
Hi! My name is Kaitlyn, I am a third-year student doing my placement at a small charity based in Orpington (South London), I moved to London and started work in the same few days but have been at the Maypole Project since early July and this is what I’ve learnt so far!
So, this isn’t going to be as easy to write but I feel that it is important to express the good about placement alongside the bad. The Maypole Project looks after and supports kids in all situations with all levels of complex needs… and, unfortunately, a lot of these kids don’t have the life expectancy that you or I have, and this is where this job gets really quite difficult.
Don’t worry, I’m not going to recount any stories or anything like that, I just want to explain and express how, why and when I came to realise just how important work with kids in need AND those around them really is.
It isn't often thought about how hard what staff or siblings or even parents see, can be for them. I was warned over and over again, how hard the job I was going into was going to be. But nothing can prepare you for what it is like and there is no way to know how you will react. Personally, I have handled the struggles of the job better than I expected to, I found comfort massively in the kids and how much they love and enjoy the trips and clubs that we provide. I am going to focus on one weekend that I was a part of both planning and delivering to the siblings of children with a disease called battens.
The last weekend of September was HUGE for the Maypole Project, it was the first year in which we were attending a conference of one of our partner charities called BDFA (Battens Disease Family Association). I’m not going to get into the details of battens, it is an awful and very rare genetic disease and if you want to know more about it than I’m about to explain, there are lots of great resources online.
In the simplest terms, Battens Disease is a degenerative disease that often shows up in childhood or early adulthood and is – for lack of a better word – fatal. There is no cure and only a preventative treatment for one of the up to thirteen types… and even then, it is only giving the receivers a little more time.
Heavy stuff I know… but stick with me.
So on the Friday, we rallied our team, packed the bus and off we went to Stratford-upon-Avon, where the conference took place. Families from all corners of the country were travelling in by any means necessary to attend the weekend and find out more about research and talk to others or counsellors face to face about the stresses and upset that battens brings.
The Maypole Project’s role here was to take and entertain the siblings of affected children (who were taken care of by staff, volunteers and other organisations present), Maypole’s work is unique in that sense, while these kids were looked after and watched over by nurses and volunteers, we took the often overlooked group of siblings – up to 21 of them to be exact – on a huge weekend of fun at which they could just relax, breathe and have fun.
It is something I have loved from the minute I joined Maypole, there is never a moment that every single child isn’t being thought about. It definitely wasn’t easy, we took the twenty children and six staff members out on a multitude of activities including, sports games, a butterfly house, a boat trip, clip n climb and so much more, but it ran perfectly and they absolutely loved it. We were told multiple times that they didn’t want to leave and were being asked when we would be coming back! Which was good, it was so rewarding and beyond amazing to have given these children who deal with so much a weekend to just be kids, to jump and play and experience things that they otherwise would not have had. They could enjoy their time without having to think and worry about the whereabouts of their families or need to help with siblings etc and that is great… but I had a moment just as we were saying goodbye on the Sunday that it suddenly clicked – each one of those incredible children had a sibling with battens, each one was facing the loss of that sibling or siblings, and all that good we had done crashed down to the very real thought of what they were going back to.
We were told how hard this was going to be but I think I speak for everyone when I say we didn’t expect it to be hard in the way that it was! Children are very physically and emotionally demanding anyway and to be faced with children who live in such a horrible situation was even more so. This conference could have been incredibly long, hard, boring all of those things for these kids but instead they didn’t want to leave on Sunday, and were itching to come back to us in the future. This is how I deal with it.
There is nothing like knowing you have given a child the time of their lives and knowing that something so awful was turned into something fun and something they want to remember and do again is beyond rewarding as a staff member.
Dealing with something like this as a staff member and as a group so passionate about it is not easy and it never will be easy, but how I have dealt with it so far is through the knowledge that they loved it, that they just got to be kids for the weekend, there was no worries or stresses, each and every kid got to just have fun, the good that these things do far outweigh the awful heaviness that comes with it!
The last thing I want to bring attention to when it comes to the impacts these kinds of roles have on you is the guilt behind it. I have had multiple people say this to me regarding the conference and other similar situations. You will almost feel bad, like you shouldn’t feel so affected by it all because it's not your family and it's not your situation and that it is almost unfair on the families that are living it for you to feel so awful about it. But actually feeling these things FOR those families is very normal and a bit inevitable in these jobs. Getting almost hardened to it or knowing how to deal with this in a way that takes out that hurt and guilt towards the sufferers and their families is something you learn very quickly and effectively. I have found that the want to do good, to help, eventually grounds that feeling and no matter how often you may go through it – and I can imagine it never gets any easier – it will always keep you doing it again (I’m already down for next year’s conference).
I know this hasn’t been the nicest of things to read… I just think it is important to stress how intense this stuff is as a staff member… It’s easy to think these things won't be too bad or that you won't be hit by any of it or even that you shouldn’t be effected by something because you aren’t living it, the families have it so much worse etc. But this just is not realistic.
I can’t explain how or even why it does but these things hurt, you hurt for the kids, the parents, the siblings, you know there’s nothing you can do but you so wish there was.
Now I’m not saying this to put you off of working in these kinds of areas, I just wanted to be very clear about the fact that it will hurt at times and it will feel amazing at others. Knowing you’ve given families a once in a lifetime opportunity and a memory that will never leave them is so rewarding and I wouldn’t have it any other way. You just need to be ready for it and prepared that at times it will hurt and it will be unfair – I’ve only worked there for three months, would you believe I’ve derived all of that already?
I know this was a shorter post but it is such important work and the amount of happiness it creates is unmatched. I mean it when I say there is no feeling like it, but you must not take it lightly how hard it can be at times, that it will be all you think about, that there will be days where you are exhausted and staring at a wall just processing what you’ve done, heard or seen. But remember, while you’re doing that, the kids are somewhere excitedly telling friends and family how amazing YOUR work is and when you go back to life – and you will – so do they…
I hope this has made it clear what it takes and what it involves to be in these kinds of roles, I believe anyone who has a passion for helping and changing lives can do this and will love it as much as I do already.
Thank You 🙂
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