But he’s MY brother

When we launched Harry’s Hydrocephalus Awareness Trust – or ‘Harry’s Charity’ as Lewis, Harry’s seven-year-old ‘little, big brother’ calls it – it was all about finding a cure.  We didn’t (and still don’t) want Harry to live with this condition forever and surely, we thought, there must be a better way.

Fast forward a year and yes, we still really want a cure, but we have also become more realistic.  The funding for research into Hydrocephalus in the UK is poor.  To be frank, it’s just not sexy enough.  So now we look at ‘the cure’ as a long-term goal and in the interim we’ve set about addressing significant need by funding nurses to access training (not available within the NHS) which will help them to be better able to treat children with Hydrocephalus on a day-to-day basis.  To do this we have to fundraise, and it’s really no exaggeration to state that every penny really does count and every penny is hard won.

Whilst the fundraising is going reasonably well, what I didn’t account for is the impact; not just on me, but also on the kids.  I write this in January.  In our local community, Harry’s HAT is currently one of the chosen charities in the both the Co-op (we are thrilled about this as it lasts for one whole year) and, just a walk up the road, in Waitrose too.

Last week, we had a double shopping-related disaster.  Firstly, the Co-op, where they proudly display their chosen charities on a huge TV screen behind the counter.  We are of course extremely grateful that they have chosen the charity, but the screen does present some challenges!

I am in the store with the kids when Harry’s angelic face pops up on the large display.  At that exact moment, Harry decides to show his best ‘I am two’ credentials!  Queue a local Mum (dare I say – the type that lunches a lot!) who looks horrified at Harry, now lying on the floor kicking his legs and screaming.  “Is that him?” she asks.

Ellie, Harry’s big sister, pipes up, “Yes!”.  The woman now wants to know everything, including all the particularly gory details of Harry’s condition.  This piques interest from everyone else in the queue and suddenly I find myself talking to complete strangers about Harry’s condition, his birth, life-chances and so on. This is all happening whilst I am still attempting to placate Harry, who then pokes his finger in my eye. Harry chooses his crescendo moment to then break free and kick out, hard!  To my horror he knocks over my cringe-worthy shopping which consists of – Tampax, a bottle of red wine and nappy bags.  As I scuttle around trying to pick up the items (and my dignity) I wonder: “Do I laugh, rock or cry! And will this help or hinder the cause?”

Fast-track to a few days later –  in our local branch of Waitrose.  In case you are not familiar with their community-giving scheme, inside the store there is the box with three chosen charities for the month.  Customers select their favourite by popping a token in the box and at the end of the month £1000 is divided between the charities, the one with the most tokens getting the higher percentage.  Lewis is thrilled that Harry’s HAT has been chosen and has told everyone at school to make sure that their parents now shop in Waitrose and support Harry’s HAT – otherwise he won’t play with them.  He is a popular kid – his plan is working!

In store; Lewis is with me and all is going well until ……. he sees a lady right in front of him drop her token into a non Harry’s HAT box.  It was, to be fair, an amazing cause and probably one I would have chosen!

Before I know it, Lewis has run up to the poor lady proclaiming “But you didn’t choose my brother’s charity.  Harry is my brother and Harry’s HAT is all about helping children like him with Hydrocephalus” (note the proud Mum moment- he can pronounce Hydrocephalus).  The poor woman looks mortified.  It happened in slow motion – giving me time to wonder “do I run up and apologise or hide and then once she’s gone coax Lewis over with chocolate”. My Mum brought me up well, so I choose the former, run over, shake my head at Lewis and apologise profusely.

She turned out to be lovely and we ended up chatting for ages, with her confessing that she was lonely and missed her late husband dreadfully.  Oh for God’s sake, could I feel any worse!  She was so kind to Lewis, telling him what a wonderful and brave big brother he is!

Since ‘Waitrose-gate’ I have sat down with Lewis and tried to explain the concept of choice, highlighting that we don’t really want to get barred for harassment!  I think he understands now.  But in his seven-year-old head, fundraising is a competition.  It is hard for us as adults to understand when people don’t support or engage with something you care so passionately about; but to be honest it must be totally incomprehensible to a child aged seven.  I’d be wrong to pretend that I don’t will people to pop the token in the “right” box, but at 41, I just have to do it silently!

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