If there is one thing that I have learned since Harry’s diagnosis is that everyone has an opinion, Google has a lot to answer for and people like to ask. Doesn’t matter where or who is in ear-shot. Once, within the space of just one hour, I was told that Harry was a) one of the smartest 19 month-old children that the person had ever met. Skip forward half and hour to be told that b) Harry has learning disabilities doesn’t he?
Basically when your kid is diagnosed with a serious condition, there is no rule book. No ‘How to act’ guide. You just have to do the best you can and as trite as it sounds, take each day at a time. In our case, we quickly saw the disparity in care, facilities, emotional support and awareness. We could see that the NHS is on its knees and we also found that nobody had a bloody clue what Hydrocephalus is- let alone how to spell it! We also found out that the Shunt which is what keeps Harry alive was invented some 60 years ago by Roald Dahl, a toy-maker and a team of neurosurgeons and that basically the technology hasn’t really moved on since then. We knew that if nothing else we wanted a better life for Harry and the brave kids and their families that we have met along the way.
Given what we were seeing and that for the last 20 years of my life I have worked in charities we knew that for us launching the charity was the right and most natural thing to do. The need is so keenly obvious and although there are some other great charities in the field there are none which focus purely on Hydrocephalus. Working in the sector already gave me access to a network of people who can help and I could see how, with the right support and funding we could really make a difference. We persuaded a wonderful group of people to join us and now have the most amazing team of Trustees who are all talented, passionate and committed to making life better for children like Harry. So since our official launch in April 2018 we haven’t really had a chance to look back.
What I hadn’t prepared myself for is the comments..children and young people are by far more sensitive than adults who just should know better but just cant resist a bit of gory detail. I should point out that 99.9% of people are supportive, encouraging and truly kind but there are some who literally have no filter and ask the sort of questions that make you feel like you have been slapped when you least expect it “So will he die?” is one question that we have had lots of. Spoken loudly and often in front of Harry’s siblings, whilst Harry is hairing around, causing mayhem behind me. “We really hope not”, is my usual reply “but then this is why we are doing this- we want to make life better and give a better chance for children like him”. “That’s good” comes the reply “but what is his prognosis, really” Try being asked in front of others what you would do if your lost your beloved child. Seriously some people need to think before they engage!
On the flip side being Harry’s Mummy and inadvertently naming the charity Harry’sHAT does have some advantages. On one evening a well dressed, middle aged man, staggered up to our stall. “What is Harry’s HAT” he scoffed.. Well I said it stands for Harry’s Hydrocephalus Awareness Trust. Hydrocephalus means water on the brain and see the picture of that little boy? That is Harry and he is my son”. The chap paled, his mates shook their heads at him and he thrust £50 into the bucket!
Another such incident was when collecting at an amazing event. We’d had the best time, raised a fortune and everyone had been fabulous. We walked around the festival with Harry, the buckets and with Lewis proudly sporting a very bright dinosaur face paint, when a lady looked up (Note to the regulators we were not shaking the buckets!!). “No, don’t you come and ask me” she snarled across at us. Lewis looked gutted. “Mummy why is that lady so horrible?” he asked. “Why doesn’t she like Harry”? “Don’t worry sweetie” I said trying to stifle my own hurt, “some people just don’t understand”.
This is just a little plea to the miserable 1%, please remember people collecting for charities are often doing so, forsaking their own family time, because there is a real need and they feel passionately about addressing it. We do it, because we know the need is real and some of us are deeply, deeply connected to the cause. If you don’t have anything nice or supportive to say, then just walk away and let the 99% do their thing! Since doing this I have learnt to look up and say “No Thank You” to people who hand out leaflets or ask for donations for causes that don’t resonate with me. A public apology for being a bit of knob in the past- I will now always (try!) to be nice!