We were lucky enough to meet Emma and Joe (the famous Joe!) from Joseph’s Goal, the charity we support. It was after rushing about meeting Van Hove. They were also in London to meet Van Hove, and listen in on the research update. We went to them, in the lobby of a hotel near Regents Park.
Oh my days, I find such comfort in the company of parents who get it. Who understand, who hold the same hopes and fears and dreams for our kids. Who understand the day to day complications and just how demanding it all is. To spend some time with people who don’t shy away, who aren’t awkward and who just get it.
Joe, oh my days, Joe is amazing. He’s so long and lean, with the bluest eyes you ever did see. Joe is quite disabled, as I think Kai is likely to be. Emma and I were talking about our fears and hopes and one of the things she mentioned was about how different all our NKH kids are, how their mutations express their abilities in different ways, and how difficult it is to imagine that life our for babies. Joe is disabled, but oh my days, he’s beautiful. He’s able to vocalise, and it’s clear when he’s struggling and when he’s enjoying himself. Sitting with his Dad Paul, he was so relaxed, and happy. It was obvious to see.
I don’t shy away from these kids. I think we’re lucky that we spent so much time in hospice and were exposed to see many less able children, from something like autism to children with tracheostomies to children much more disabled than lovely Joe. And I have to say, Joe is eight years old - and just, I’m scared to hope for that long with Kai. We were told weeks, and then months and Kai is still trucking along. Our next milestone is a year. We're six months in, and a year feels like too short a time. We sit between an awkward place of fear, being told that any ‘acute event’ could rob us of Kai, between trying to make the most of every single moment and trying to live our lives. It’s tense, constantly waiting, feeling like every moment is precious. I’m not really able to settle when I feel like every day we’re lucky to have Kai with us.
To hope for years…. I’m scared to hope that we’ll get that long with Kai. Could we be that lucky? Eight amazing years, and Joe is still going like a trooper.
We also talked about all sorts, what its like to run the charity, what the researchers are doing, the upcoming conference in August, how tricky it is to fundraise, how to trust other people with our children. We also talked about having other children, and the fear of having another NKH child, the split between neuro typical children and our NKH kids, how to manage and teach through the oddities of strangers attitudes towards our kids.
There’s just so much to navigate with a special needs kid, there’s so much happening with the NKH community and the researchers.
Honestly, I wish we lived closer to everyone - meeting Emma, Paul and Joe, back when we met Kirsty, Jon and Alex, its so comforting to be in the company of people who get it. We spent a good few hours just chatting to Emma, Paul and Joe, and oh, I wish we could have spent longer.
Hopefully we’ll see them again later in the year. It makes such a difference you know, to find your tribe. Such a good day.