Do you know what tomorrow is? Have you marked your calendars? Made a window in your diary?
Besides the comedown of excitement that is the day after my birthday, tomorrow is Undiagnosed Children’s Awareness Day. Did you manage to say that through a mouth full of Hob Nob? Without spraying whatever your reading platform is with a scattering of crumbs? Now look at those crumbs. And read on. And be prepared for a naff segue or two.
In writing this, I first wanted to look back. To see where we were last year whilst the party poppers were being enthusiastically pulled, and the ground was a rumble with the first Undiagnosed Awareness Day. We were here, in hospital, amidst head scratching and worrying. Living life on that knife edge, the one where patterns of illness were appearing, halting futures planned. Just trying to Get Through. And hoping. And searching, whilst yet not wanting certain avenues to be our path laid ahead for us.
This year, a medication change later, and our foundations have shifted. One problem has been eradicated- the monthly cycles of blood sugar dropping, weight reducing, explosive… Well, let’s not be graphic here, but if you were looking for a pebble dashers in the Greater Manchester area… It’s all stopped. But then, all of a sudden, we are dealing with a thirst. For a child fed by tube because predominantly he refused all offers of oral feeding, which probably masked a greater feeding issue, it’s arrived like a comet. Totally out of the blue. And so now, we are dealing with this. Because it impacts his behaviour. And water down an iffy drainpipe doesn’t cover the gulps and splutters he produces. But. We’re not in hospital. And I’ll take that.
So you know those crumbs earlier? That is the mess that RD’s clutch of mini diagnoses. You can try and try to mush them back together, but you’re still left with just a grubby hand. Or some misshapen clods of crumb that possibly from a distance look like a biscuit. But fall apart at one prod. This is the child, that has Congenital Nephrotic Syndrome, but without any the most life threatening complication- swelling. In fact, we are now considering treating him with an anti diuretic to stop him peeing so much, which we think is responsible for this thirst. And therefore, potentially causing some swelling. Turn it on its head son. Upside down do you look Mitochondrial? Renal? GastroenteroUnlogical?
And so whilst we navigate this, which I’ve potentially painted as a glib, soulless place, our true North has always been SWAN UK. A group of families living in this hinterland of medical or developmental fractured pieces, or as in our case, a bit of everything. And whilst no two are the same, we’ve all got a bite of the biscuit, and some glorious nuggets to share. It has emboldened my resolve, given me ideas, picked me up, given us a place and a space. Which, as you see, is somewhere that beyond the clinical and the worry, the therapies and the tears, grief and hope, is overwhelmingly… Well, over to you kids
So, please share, shout, and shake it all about. And you know, if you were thinking about a coffee to go with that Hob Nob, why not donate the money instead.