I am a child of the 80s, to be specific in a round about way to
prevent you from selling me PPI compensation protect my vanity, I was born right at the start. You’ll have probably picked this up from the Tetris/development analogy in my previous post When Life Is Like a Game of Tetris, but dangerously it got me thinking. It got me thinking that was quite a flashy way of describing what it’s like to have a child with unoptional extras, a computer game, albeit a souped up version of frantically sorting lego falling in slow motion. Actually there’s a lot more wet weather games that adequately summarise the sitting cooped up in a static caravan with rain streaking down the windows passing of the time that is The Search For Answers.
For a start, I hope that you get from that that in our instance things have been slow, static, a bit damp. Tinged with anti climaxes and stewed tea. There is a poem that, when you start dipping your toe into admitting that your child just ain’t like the ones in the books, and become a late night best friend of Google, crops up in aid of parents looking for hope in raising a disabled child. It’s called ‘Welcome To Holland’ by Emily Perl Kingsley. If you haven’t read it, and maybe you’ll add to the numbers in the search engine tonight by looking it up, here is my summation. You think you’re having a ‘normal child’: you are en route to Italy therefore. You are surprised by landing in Holland: you have a ‘disabled/different child’. Italy is what you’ve dreamed of, Holland isn’t but you grow to love it (but still wish every now and then to go to Italy). I hope that some of you are snorting in derision at it’s glibness. I mean, come on… Is that also a world where ultrasound can tell you everything? Where you’ll know straight away you’ve landed in Holland. And Holland… isn’t that a bit tangible and more than a little insulting. Of course, it has it’s detractors, parents peeved by it’s supposedly soothing tones. Dana Nieder in ‘Welcome to Holland: Amsterdam International’ and just last week, fellow SWAN blogger Mavis Cruet in ‘Unchartered Territory’
We knew our arrival had brought us somewhere different from the start. If you never been to a Special Care Baby Unit, I wouldn’t put it on Trip Advisor. Sure it’s flashy and noisy, but never again do I wish to spend nearly 4 months at the one armed bandit in Las Vegas. Sort of loses it’s appeal after the first thirty minutes. But really that’s not where we ended up for the most time, once we’d visited the arcades, we went back to the caravan to play board games. First up, Guess Who.
We came home with the birth notes proudly claiming ‘Read All About It, Dysmorphia Found Here.’ We looked at the hand we’d been dealt, and all I wanted was to press it tightly against my chest, so beautiful was it in my eyes. But I knew time was passing, I was going to have to look it up. I was going to have to start pulling over my cards with closed questions. I was trying to have a sneaky look at your board. Blonde hair? Yes. Albino? No. Small? Yes. Leaky kidneys? No. Can’t eat, won’t eat? Yes. Developmentally behind? No. Cards keep on popping up on my board, it’s a real bugger to play. I don’t know if we’ll ever finish, but I’m taking notes. As a special needs parent, you’ve got no call to be competitive, it’s be like starting a race with a blindfold half on, but that doesn’t mean we’re not comparative. I just want to know, something, anything more. It’s difficult to get my game of Guess Who back in the box with cards still popped up.
Next on the table (you’ll like this segue) is Operation.
It’s safe to say Rufus has endured a few, really his count isn’t too bad considering. Some when he was barely a hand’s breadth, life saving. As he’s fattened up a lot more have been ‘exploratory’. Is it his upper gastric tract? BUZZZZZ!! No. But really the analogy for us adds to the quests for answers, doctors burned by the buzz of probing in the wrong places. Our opponents drop back, who knows who may enter the fray next? Discharged by Cardiology. Discharged by Gastroenterology. Renal teams only got a little tingle last time they tinkered- his biopsy showed something near what it was supposed to. As long as no flashing red lights come up near his head we’ll still play. Still don’t really know where the spleen is or what it does though…
Oddly enough out third game to pull out the nostalgic toy box still features in a lot of hospital waiting areas, albeit ‘super sized’. I suppose we are waiting for our drive through. It’s Connect Four.
Really, this isn’t too dissimilar to playing Guess Who. But just when you think you’ve got three lined up, Rufus comes and throws you a game changer. Or, as is frequently his want, kicks out the bottom, and knocks us back to square one. He’s a good kicker is our boy. Things don’t follow straight lines with him. But I’m sure the team of specialists involved will somehow bash out a straightish line right? Well, in the meantime, I’ll reward myself with our dogs hind leg version. And we’ll get Connect Four out each day of our journey and revel in the exciting new links it can make. Again, mostly with his feet. He’s good at kicking his gastrostomy pump over at night with a foot through the cot bars, can’t say you wouldn’t be proud of that little rise up against the system?!
And lastly, the one I really don’t like to play, because the Ds feel a little too involved in this one. We’re a family of marbles in a Kerplunk tube.
As the specialists work out their next move, as they twiddle with their sticks, we roll about on top. The geneticist removes a few. Results come back and leave us teetering on the edge. But sometimes, weirdly, a stick gets put back in, but it slights one of us, glances near our hearts or our health. But supports us, helps us stay up… More therapies, more equipment. Statementing. CDTs. And we don’t really ever want to drop to the bottom because then what?! And as Mummy and Wolf D, we’d always push Rufus and Bun marble back behind us, take the leap first. This analogy is getting a little jumbled, a little unclear. I’ll bring it back… We’re looking down through sticks holding us up, hoping that nobody pulls the one out from under us that holds us all together.
So, rather than Welcome to Holland, welcome to our wet weather 80s British Caravan holiday (insert location based on your destination of choice). Don’t worry, there’s plenty of games. And it has sunny intervals where you throw off all shackles and go paddling in the sea. And I’ve talked about nostalgia before, the great thing about a glorified view of the past, is you remember the good bits on the whole. And you laugh at the boring bits. And the summer seems endless, as if the whole thing has been Instagram-ed. You don’t need to take good photos to benefit from that. And you don’t like, but really do like, tinned peas.