This is our sixth NKH Awareness Day. When the first one came around I was in shock, still really grappling with our life, still, if Iâm honest, in denial that my baby was even disabled (despite having just been discharged from hospice on end of life care… trauma coping mechanisms are wild).
This year, god Iâm tired of asking. It feels hard to keep holding out my hand to ask, repeatedly. Iâm skydiving, Iâm selling books, and Iâm asking people to donate, Iâm asking people to run – Iâm a never ending bucket shaker, shaking my little heart out in sheer desperation.
Because when Iâm shaking my little âplease god HELP MEâ bucket – what Iâm not sharing is the seizures. The screaming, the pain. The days where my boy doesnât wake up. The WEEKS heâs had off school. The panic when the sats monitor goes down to 80, and Iâm yanking him out of bed to try get him to breathe. The cough that causes him to vomit his meds, retching until his stomach is empty, causing us both to be in tears. Him, because of discomfort, me, because I know I canât give regive the meds and now heâs going to be in so much pain, heâs going to have more seizures and itâs going to be a shit time for everyone. This isnât a phase. This is his life.
Iâve been trying really hard to give him his dignity, because people on the internet donât need to know, in real time, the hard. But it IS hard. And the harder it gets, the more I start shaking little donation bucket because something has to CHANGE. And I canât fix his genes, I canât take away the seizures or the vomiting or the pain. But what I can do is ask for donations (again). Because hereâs the thing, if I make ÂŁ15 for NKH research, thatâs not nothing. That is a tiny inch, in the right direction.
I also think this is going to be the last time I ask for donations on NKH Awareness day you guys. This is so hard. SO HARD. You guys have been in our corner, so wonderfully supportive, but Iâm tapped out. This is an emotional week, remembering kids who we love, who are in pain, who have died. So, I guess, please donate? For the last #nkhawarenessday?
Facebook:
facebook.com/donate/320932097682656/
Justgiving:
justgiving.com/page/nkhawarenessday2024