I can't even begin to tell you guys about the outpouring of love we get every day. With every post or update there are emails, facebook messages, whatsapp messages, comments and texts. So so so much love. We're so grateful, we really are, that there are so many people in our corner. So many people thinking about us, and following our story.
But sometimes, some of the messages, while good intentioned, aren't as helpful as one might think.
I read a thing today, an article by Tim J Lawerence about how things don't happen for a reason.
It's a good article. I've struggled with the words 'everything happens for a reason'. People say it all the time, but I'm not a fan. That Kai having a life of pain and hardship 'had to happen' for something better to occur? For some kind of improvement to happen? For us to raise money so a cure can be found? So we could discover what kind people we are or friends that we have?
Tim says it better in his post than I could:
Kai's disorder can't be fixed. I have hope in NKH research, which is why I bang on about fundraising and how if you really want to help us, fundraise for NKH. But right now, the dreams we had for Kai, the experience of raising a typical baby, the imaginary life we thought we were going to get, we can't fix them. We grieve them. We grieve Kai's future, and the pain he's in, and the future we thought we were going to have.
Which is also why the phrase 'I can't imagine' isn't helpful for us. Because we can't imagine living this life either. Because when someone says it, it's impossible not to silently add 'and I'm glad it's not happening to us' on the end of it.
Here is what is helpful for us to hear:
"We have donated. We are organising a fundraiser. We are raising money for NKH. We are doing something."
I know this is a difficult one. I know it means work and effort and it's harder than sending an email telling us you're thinking of us. But this is the single greatest thing that can have meaning for us, this is one that is most important - the doing that says we believe a future is possible, and we're helping you get there.
Research is so significant for us, because it is the sole ray of hope we have for Kai's future. So many of our doctors and consultants are doom and gloom, who say that because we can't treat the underlying disorder, we should be concerned with keeping Kai comfortable (silent addage: and wait for him to pass on). We hear this at every visit, every doctors appointment they reference his death and how hopeless treating anything would be. What keeps us going is the hope. Hope that a treatment will be found through research. Raising money for that research, that is significant for us. As one of the other NKH mums says, in regards to research, hope is on the horizon.
It's also helpful to hear: "You can do this. We hear it's hard, we hear that you are struggling and we hear that times are difficult. But you've got this. You can do this, you can face the scary hard unknown, and you don't need to do this alone. We are here, and here is an actionable thing we will do with you."
That last bit? The actionable thing? Better than 'if you need anything, just ask.' Or even "just letting you know we're thinking of you." The actionable thing that would be most helpful would be if you had ten minutes, half an hour, an hour to google some NKH stuff for me.
About what seizures are and what supplements can help him recover (Taurine? Tyrosine? Omega 3? Alpha lipoic acid?). About how a type of medication works. About how to teach a kid that can't swallow how to swallow. What a keto diet is and can you do it while breastfeeding? Is the keto diet good for glycine? Is it better or worse than the low glycine diet for NKH? When should we introduce solids? How do we do solids with no swallow? When we can get a g-tube and what kind of solids can we do with that? What physio/OT things should we be doing? What benefits can we claim? What research programmes should we be a part of? Should we be getting a tumble form? Is there a grant we can apply for for things like bath equipment, extra physio or osteo sessions? When do we start worrying about scoliosis? What things should we be worrying about that we don't know yet?
My list is exhaustive and goes on and on and on.
Or the actionable thing could be something from the help list. Or it could be you just showing up. "I'm coming to visit next week so we can gossip and you can experience some normality. What day is good?"
I don't mean to complain, or ask for anything. No one owes us anything, and we're so so so grateful for the love, and the immense waves of support. Just, please no more 'everything happens for a reason' or 'I can't imagine's. Also, if people could stop using the word 'retard' as an insult, that would be good too.