Nothing lasts, nothing is finished and nothing is perfect
I’m not particularly mindful. I’m a million miles from Zen most of the time, bolstered by a Mum on the Run diet of cheap snacks and caffeine.
And apologies if this is a bastardisation of the said Japanese philosophy. But as I oil the rusty cogs of trying to articulate my brain fug, I’ve had this phrase floating around I there, occasionally bumping off the sides. It seems to accurately sum up a space we’ve been existing in. A space where, thankfully for quite some time, has had its own odd stability. That from the outside may seem wonky, frantic and necessitating a penchant for gin but has actually been relatively calm, happy and glacial.
So, all that running eh? Who’d have thought it, that the girl who’s own knees could take each other out (a genetic trait that my daughter has acquired), that was in the final few at any race at school and that scoffed at runners, could actually find it such a tonic. So much that I finished the Virgin London Marathon in April in tears, happy tears, as the experience had been so fully transformative. That I also cried two thirds of the way through knowing it was going to end and despite the pain and endurance, I didn’t want it to. Crying as I completed a childhood dream, remembering being stood by the Cutty Sark as a 4 year old watching my own mother pass by, and hoping one day I could be a real life super hero like that: Foil blanket non negotiable (Yes, crying featured strongly). I wasn’t a perfect runner. I was mostly a soppy mess. But I’d done something that had previously seemed like a pipe dream, and I knew that wherever I have been the last few years took me there.
And I may have sung “The Wind Beneath my Wings” (in my head I hope) and imagined my family. Because I’m still actually not cool.
RD has been stable. Really stable. We know underneath it all that his blood work doesn’t show such stability, but from the outside he has flourished. Pink in his cheeks and meat on his bones, he has made big strides from the baby that was a curled up little dormouse. We’ve all come to understand that he sits firmly in the severe to profound end of disability. But the nice thing is, once you let that in, and embrace it, his only yardstick is himself, and what he achieves. His physical feats, his developing curiosity, his calm and sweet nature are all his. And yes, I can’t sugar coat it, he has had periods, and is still prone to periods of self harm. And getting his poo in places. But he is my impish, beautiful boy, who is about to turn 5; a milestone in itself.
And DD. If RD is an Imp, she is my full on pixie. Full of mirth, joy and deliciousness. And toddler tantrums. And tiny hands that goose me. She continues to bring the umami to us all. She loves Eetabix, princess dresses and football. Just on the cusp of 3, our big little girl whose understanding of the things around her brings perspective. Occasionally this is painful; her reading of Pirate Pete’s Potty had her as like Pirate Pete (Score! I thought) but then RD as the baby. But mostly, she lightens or distracts most serious moments. Climbing on the doctor’s knee for a cuddle as he talks through transplant options, or flouncing into the hospice in full Snow White regalia complete with Frozen pink vomit wellies.
We’ve moved house. And area. In fact, we’ve become adults and actually own property. Years of frustrated Pinteresting have exploded over every room. We’ve stripped and painted, taken out walls for better accessibility. I love it like another child…
But onto that… New house. New baby.
I have to cycle back a bit. Somewhere in all those changes and moves, I got a phonecall that I honestly never expected. Over the last year we’d spent some time discussing and never really concluding whether we had finished our baby days. I think we were settling on that we’d been lucky now. That the risks felt too much for DD primarily. We could give her an equal playmate. On the other hand potentially living the knife edge of losing two siblings or being responsible for double life long care.
So when our lovely geneticist called me in December I assumed it was just a check in. RD had been stable since all the metabolic and mitochondrial testing days so the balance of routes to look into had shifted. When they’d asked for consent for more bloods in the preceeding months for some new testing, we agreed to it as we had so many others. Just in case but never expecting. A long wait over Christmas until we could fully catch up, but what they had come across was all we could hope for as a wider family whilst simultaneously as useful as a chocolate teapot when describing RD.
In his early days as a neonate, after many a sleepless night spent on Google, I asked his consultant whether RD could possibly have Russell Silver Syndrome and Congenital Nephrotic Syndrome together. Oh, how that was dismissed as impossible. Unheard of. Not that I like to have the last laugh, but Ha. Essentially that’s what RD has. He has a MUPD (Maternal Uni Parental Duplication) of Chromosome 6. That is known to be one of the causes of Russell Silver Syndrome. He has a gene change within that that is known in duplicate causes kidney and brain abnormalities in mice. So far unseen in anyone else.
The upshot being that a maternal duplication of a chromosome is incredibly rare. So, so rare that we were told it’s rate of reoccurrence was negligible. And DD was not a carrier. After I moved on from some misplaced guilt that I somehow caused this, that can of worms could be reopened. Back to the marathon. I actually suspected I was pregnant just before I ran it. Thankfully although somewhat uncomfortably that proved not to be the case. I’m not sure we were ready at that point. But as we had a weekend to ourselves it meant we could discuss it with clarity. We agreed in all Bristishness that it was time to start thinking about it again. Very decisive there.
2 months and a week later, I showed Wolf a positive test. His reaction was that it was ‘only 60% accurate’. Glad he’s not in advertising for ClearBlue. Being a very proactive pair, we were still thinking about trying. The power of thought right there.
Nothing is finished, and nothing is perfect.
So here I am, back at my keyboard. Oversharing. Starting another circle of life, with less lion lifting (I am completely unaffected by the Disney marathons of my daughter as you can see).