Tilda is 23 months old today and wholly oblivious to the chaos unfolding around her. However long this lockdown lasts, our priority is to keep her safe in her little bubble.
Because of her kidney disease, she’s classed as high-risk – this usually requires frequent monitoring at hospital, but that’s the last place we dare take her right now. All visits to help with her hearing and speech are also understandably on hold.
The world’s pressed pause. In the meantime, Tilda’s mastered the remote control and relishes turning the volume up to 100, just to amplify the panic on the TV news.
She’s grown noticeably taller and even more affectionate – she loves giving hugs and kisses. She also likes to “help” organise the house – oregano in the washing machine, bank cards in the bin and vitamin tablets down the loo? Great motor skills, Tilda! At least we don’t have a cat flap.
“How old is your baby?” a man in the shop asked my mum.
“22 months,” mum replied.
“Ahhh, my granddaughter’s 22 weeks – snap!”
I wanted to tell him that I’m actually a toddler, not a baby with lots of hair, but I haven’t mastered this talking thing yet. I might wear clothes meant for a 6-month-old and stand just 70cm tall, but you should see me move – not only am I an expert at stomping in the snow, but I’ve also taken up running and climbing.
I’ve been cutting my canines and it’s really put me off my food. To be clear, I haven’t been chopping up dogs, I’m talking about my teeth. It’s given me a lot to howl about, but now the tips are through I’m starting to get my appetite back. My favourite foods are strawberries, hummus and the lions in my Noah’s Ark. I’ve almost completely bitten the head off one of them.
My bestest toy is my baby doll – I haven’t tried to bite her once. I picked up the BSL sign for baby the first time it was shown to me – my speech and language therapist says I’m sharp as a dart.
I’ve had some more tests which confirm that while I can hear high noises at normal levels, I can’t hear the lowest noises unless they’re at least 70 decibels – that’s the same volume as a hoover, a hairdryer or an excitable sheep.
To make matters more complicated, my Auditory Neuropathy means everything I hear is distorted, so even when my aids make everything louder, it doesn’t necessarily mean sounds are clear enough for me to master speech.
I’ve never liked wearing the aids – they’re so clunky I just want to throw them across the room, but Mum’s so desperate to know if they actually make a difference that she’s resorted to parcel taping them to my head! I told her she better not share any photographic evidence of this farce ….
Matilda was born at 26 weeks gestation. This slideshow charters our tumultuous path from day dot to leaving NICU.
I’d be hard-pressed to describe my childhood as anything short of awesome. I was a joyful, assertive if somewhat precocious child who played the violin and dreamed of being an ‘authoress’. Mum was a talented artist who put her career on the back-burner to pour everything into making my life magical. Dad juggled his colossal Head Teacher workload with weekend adventures to the seaside and parks, his energy seemingly infinite. He was an avid photographer, and I have treasured digital copies of all 30,000 pictures he took during my formative years. You might imagine that I look back on them through nostalgia-tinted spectacles, but the truth is that no filter is needed.
So, naturally, I was keen to embrace motherhood as soon as possible, replicate that contentment and raise a family of my own, right?
Throughout my twenties, the thought of becoming a mum was akin to dressing up in my elder sister’s clothes – a bad fit and preposterous. Not that I have an elder sister, nor any siblings for that matter – I am an old child. Growing up, I was frequently alone, but never lonely, relishing uninterrupted hours basking in creativity, building worlds inside my head. As I got older, I fiercely guarded that headspace, as essential to my wellbeing as caffeine.
There was no room in my life for a small human – I was still learning how to become a fully-functioning individual myself. Instead of feeling a wrench of jealousy each time I heard of yet another school friend becoming a mum, I felt sorry for them – their freedom curtailed, burdens of responsibility clinging to their waists.
And so the third decade of my life saw me graduate with an English degree, qualify as a journalist and take my first forays into carving out a career besides Hedonist. I spent my weekends playing violin in numerous bands and fortuitously became a homeowner just as the housing market was on the brink of skyrocketing.
I had a few stabs at long term relationships but for the most part, they were tumultuous. My first love became brainwashed by a bunch of fundamentalist Christians, another battled with psychosis which led him to take his own life and a third had an ‘artistic temperament’ and neglected to tell me that he preferred men. With hindsight, my voracious and often baffling appetite for the unsuitable and unconventional over stability put motherhood on the back-burner – raising a child with any those partners would have been like trying to build foundations in quicksand. I told myself that having children was something I’d do one day, perhaps when I was thirty – the age my own mother was when she gave birth to me.
But thirty came and went and I realised I felt no closer to assuming the identity of my imaginary elder sister. It just seemed too … well, restricting. Unsuited to nine to five monotony, I walked away from the security of traditional employment and began freelancing as a writer. Financially I took a hit, but the sanity I clawed back proved just about enough to sustain me.
I embarked on a Master’s Degree in Creative Writing, transporting myself into my stories, weaving plots and shaping my characters’ destinies. I decided to major in The Novel and the brilliant Professor Jane Rogers mentored me through the process of writing my first polished full-length work. Angel Hair and Baby’s Breath chartered an infertile woman’s journey to become a mother, but the yearning voiced by my protagonist Eva did not mirror my own – it was pure fiction.
When I was thirty-two I met a man who broke the mould. Not only was he witty, enormous fun and wildly eccentric, he was also grounded, emotionally intelligent and incredibly kind. In essence, he was my equilibrium. From our first meeting, I found it impossible to imagine anyone else by my side and by some colossal stroke of luck, he felt the same way. This in itself might sound like a fantastical narrative, but this time it was for real and I considered myself ridiculously fortunate.
We spoke about kids early on, those words ‘one day’ cropping up again. There was so much we wanted to share first and step by step we passed those milestones – setting up home together, getting engaged, planning our woodland wedding. By the time we married, I was thirty-six and still there wasn’t even the faintest sound of my biological clock winding into action.
And then it struck me – what if I wasn’t meant to be a mother? Perhaps I was never destined to grow into my elder sister’s clothes, to don the mum uniform which would swathe my identity? After all, I loved sleep with a ferociously guarded passion, abhorred routine, partied with my friends at a moment’s notice and regularly put the world on pause to absorb myself in twelve-hour writing sessions, sustained only by Marmite on toast. How could I ever be a mum without spreading myself too thinly or cutting out the ingredients that made me feel like me? Maybe I was just too damn selfish to sacrifice enough of myself to make someone else feel whole?
I knew there was no ‘one size fits all’ and I felt no societal or familial pressure to become a mother. My parents weren’t the interfering type, pining for grandchildren, and my husband maintained that he was relaxed either way – while he loved kids, primarily he wanted the two of us to be together, whatever our future held.
The pressure came from within, tied to a perception of what I believed my more mature, grown-up self would want. I was thirty-seven before I finally figured out that I’d never stop growing – outwardly, inwardly, every which way. There was no line in time which I’d cross like a sprinter, fists pumping above her head, triumphantly crying, ‘I’m ready!’
But there was a line, a cut-off point, biologically at least. In January 2017, I realised that in two years’ time, I would be forty. If I didn’t make a choice about motherhood soon, it would be taken away from me. I thought how harmonious my marriage was and how I feared anything which might unsettle it, but then I considered how wonderful it would be to create a life that was half him and half me. I envisaged looking back on my time on earth and weighed up the exhaustion of child-rearing years with the satisfaction of knowing that it had all somehow been worth it. I was certain that my husband would make a brilliant father – a teacher in a primary school and the eldest of five siblings, he was a natural with kids. I felt, instinctively, that if we didn’t at least try for a baby, I would deeply regret it in my later years.
I had no idea how long it would take us to conceive, especially given my age. For some reason, however, I was feeling cautiously optimistic about the prospect of becoming a mum before I turned forty.
If only I knew then what hurdles I would face, I might never have taken that initial leap of faith.
I’m not going to sugar coat it, we’ve had a tough time of late. Tilda turns 21 months old today and remains delighted with life despite the many obstacles her health throws in her path. I’m trying to hold onto the positives, but sometimes it’s challenging.
After remaining stable for the past year, her kidneys have inexplicably worsened. They’re currently functioning at less than 30%, meaning her kidney disease is now classed as ‘severe’, which is one step away from ‘end-stage’. This term isn’t necessarily as damning as it sounds, although it likely involves dialysis, kidney transplants and a motherload of frayed nerves which this mother wouldn’t wish upon anyone.
Our understanding until very recently was that Tilda’s kidney damage was caused by her prematurity, but the findings from her latest ultrasound scan flip this on its head – her nephrologist believes that her kidney dysplasia began in the womb and is the reason she was born early. This is the first time we’ve been offered a reason for my untimely labour and it’s raised a multitude of questions. John and I have been referred for genetic testing which will hopefully provide some answers but this could take months. In the meantime, we’re trying to piece the fragments together.
One thing we’ve learned is that the toxins which accumulate during kidney failure can damage nerves in the inner ear. Tilda’s auditory neuropathy is an ever-present issue but never before had I considered that the two were linked. There’s no doubt she can hear a considerable range of volumes and pitches but neuropathy is a complex and rare form of deafness that causes distortion and can muffle even loud noises. We still don’t know the extent to which this will impede her comprehension and speech – yet again we’re left playing the waiting game.
Tilda has finally tipped the scales at 7kg – the same weight as an average 5-month old, but an encouraging gain considering how much she lost after falling ill between Christmas and New Year. She was unable to eat without vomiting for a week when her throat became enflamed after catching a chest infection. She was admitted to hospital but mercifully we were spared an overnight stay.
January feels as though it’s been plodding on forever but watching Tilda grow more agile on her feet has brightened the bleakest of days. She’s swiftly becoming a confident walker and loves giving us the run-around.
Keeping a toddler entertained day in day out takes its toll, so after being a TV-free house for numerous years, we’ve finally conceded and bought a goggle-box. Tilda thinks it’s the best thing ever and I get to use the bathroom in peace, so it’s win-win. Sometimes even the smallest of victories can make the biggest difference.