There is a five minute spiel I do at fundraisers. About Kai, and NKH and how horrible it is and the research and how we have hope and please dig deep.
If you've been to one of our fundraising events you would have heard either me or Sam do it.
Here's the thing though... I've done it enough times to know it off by heart, and I still, every single time, get all choked up when I get to the bit where Kai's disorder is terminal and life limiting.
It's tough, having to tell strangers over and over again that one day NKH will take my baby from me. That one day, sooner than I'd like Kai will die. My voice cracks and my eyes well up and my breath is shaky. I often have to take a moment, but then I seize on the next line (which is always 'but we have hope') and then move forward through the talk.
And as I go through this little spiel I feel horrid. I feel guilty. I feel a little bit like I'm using Kai as a show pony for donations. People respond with such empathy when they see Kai. When they can see how delightfully cute he is, and how very real. We also get more donations when Kai is right there.
Its even trickier when parents are there, especially parents with young babies. Some mums tear up when I talk. They hug their children a bit tighter, and you can see the thoughts run across their face; the oh God, how terrible. I'm so sad for them. I'm so glad it's not us. And while I talk, I watch this series of thoughts play out over and over across hundreds of faces.
And I feel rubbish. I don't want to talk about Kai's delays. About his death or seizures or profound disability or the huge medical team or the kajillions of meds we're on. I want to gush. I want to go on and on about how beautiful he is. How vocal and chatty he is right now, how he's getting much better at swallowing and taking a bottle. How our physio said he's getting better at holding his head up and how pleased our dietician was to see Kai eating purée, and how he's grown an extra centimetre in the last month.
I want to celebrate Kai, not cart him around telling people our woeful tale over and over.
But, what follows on from that line about hope is how important the research is. About how it's funded by families like ours, who fundraise. There's only a handful of us. Less than the number of fingers on on your hand who fundraise for this charity. For NKH research. Who go out and do the spiel.
To have hope, we need research. For research we need the fundraising. Which means the talk to strangers, to ask them to donate. To buy some cards or a bracelet, or text in a donation (txt TKAI99 £5 to 70070), or to buy a raffle ticket (£2 for a chance to win a fancy hamper worth £180!).
It's a catch 22. I know that the need for research completely overwhelms my dislike of the talk. So we go out and we do it. And it's hard every single time.
But then the next day someone will donate a significant amount with a comment along the lines of "Heard you speak, thinking of you x", or we'll get to the end of an event and have raised hundreds of pounds and I'll be overwhelmed with gratitude for the generosity people have shown us.
And suddenly it feels worth it. It feels like people care. It fuels the hope that one day we'll be able to say we helped fund a cure for NKH. That one day (oh my days the hope!) we might even have a future with Kai.