Half her life

Today – 17 October – it is 6 years, 9 months, 10 days since 7 January 2013: the day we received my diagnosis. 2474 days, to be precise. It’s not an obvious milestone, except Kimi was 6 3/4 – 2474 days, to be precise – on that scorching hot day that she played innocently at her Aunty Anne’s while her mum and dad went alone, together, to receive the dreadful news that would bifurcate her life, our lives. Life before MND diagnosis. And life after MND diagnosis.

Your life before

You surprised us all by arriving a month early, to a family of parents, grandparents, cousins, aunts and uncles who already adored you. After an initial 12 days in hospital while your breathing and bilirubin were sorted, and a few weeks while we scaled the steep learning curve that is new parenthood, we settled into a first year of cuddles, books, train trips to hang out with mothers’ group friends at the park, train trips to Redfern to visit Mummy’s or Daddy’s office or friends in Newtown, or perch in your stroller beside the uni pool, your mum and swimming buddies taking turns to sit out laps and entertain you.

Then, the toddler years: new friends and childcare fun at Boundary Lane, where I got to sneak in for lunchtime feeds; the wonderful acquisition of language – you surmised my breasts were ‘nots’ from my instructions about (in)appropriate time and place – and humour – when I asked ‘What starts with S, what starts with ssss?’, you replied ‘a wee’; train commutes with books and conversations with strangers drawn to the smally (once, mid-scribble, you announced you were writing your thesis); Spider-Man gum-booted stomping through puddles, and scrunching autumn leaves in the local park; a social life of birthday parties and play dates; riding your balance bike; learning to count as we climbed station steps; and the odd tantrum, memorably when you discovered that the green gelato you’d chosen was pistachio, not choc mint.

There were lots of lovely outings and holidays. The long drive to Bright punctuated by visits to the Wagga Wagga wave pool and the doll museum, then long family walks and lunches, swims in the river and your first sight of snow, distributing birdseed confetti at Lexi and Tim’s wedding. Returning via Cowra with pizza picnics and the Japanese gardens, and the cafe where you (possibly with parental encouragement) cheekily rearranged the letters ‘SMILE’. Aunty and art time in Melbourne. South coast wallabies and Opera House tutus, Pearl Beach glow sticks and Three Sister sightseeing, Great Ocean Roadtrips and helping walk Cino, Playschool concerts and Newcastle breakwater, neighbourhood brunches and Sunday lunches, cold Vivid nights and Biennale extravaganzas.

And – a perk of having academic parents – a ridiculous amount of overseas travel! Volcano hikes and sunsets in Hawaii, accompanied by approximations to baby food prepared in a hotel room. Auckland zoo, museum and park adventures with dad. Paris via a dragonfruit-breakfast stop in Bangkok: canal rides and shopping, fromage and the Louvre with Bruce and Michael, sculpture gardens and a donkey ride, and a side trip to visit Tanja and Matthias in Switzerland (as you do). Then your first of many trips to Japan: Hanshin Tigers baseball, kids museum and incredible jellyfish with Saori in Osaka, Hiroshima Peace Park and museum (even more horrific than having to use squat toilets), the great Buddha and tag-guzzling deer at Nara, Kyoto golden temple and monkey mountain with Yu, Kobe onsen and shipping container art (remember the enormous bum?), Harajuku cosplay, Ueno Park guinea pigs and dinosaurs, Miffy-chan at Mieko’s and spectacular Hello Kitty show at Sanrio Puro Land, -10 degrees (snow in Japan!) and autumn leaves at Zao, manga and whale museums in pre-tsunami Ishinomaki, Yoshitomo Nara’s snow-capped giant puppy in snow-buried Aomori; and long stretches in Sendai, making friends, kindy, temples, river rowing, outdoor ice-skating, Loft, starlight pageant, earthquakes, Afternoon Tea, Anpanman. We also went swimming and saw starfish in Fiji. And in South America you saw the Christo and favelas in Rio, cute coati beside the thundering Iguazu Falls, and in Buenos Aires you tasted dulce de leche and submarino, shrieked to turn lights on at the art gallery, learnt about the ‘disappeared’ and slept through obscure opera at the Teatro Colon.

You were a shy but keen Kindy and Year One student, with gorgeous new friends and teachers Mrs Maxwell (chick hatcher) and McDowell (party-giver). Mr Lodge entertained everyone with his rambling story-telling and you gave speeches about your favourite food (mango-sushi-chocmint-icecream-pizza) and the strange stinkhorn fungi that had materialised in our garden. You loved art and Easter Hat Day and discos and cross country and Healthy Harold and progressed with your reading and maths, transitioning to chapter books via Diary of a Wimpy Kid.

In November 2012 we visited Gary, Jo, Max, Barbara and Farida in Freo. I am not sure if you noticed me struggling to unlatch the gate or step into the bath. We spent a beautiful day on Rottnest Island, communing with quokkas and making it halfway round the island before my tired legs, not yours, saw us abandon our bikes for the bus. In December instead of our normal family walk to and from your swimming lessons I made an excuse to catch the bus. Your dad was away when I first saw our lovely GP and a neurologist: as we did messy Christmas baking I told you it would be good to find out what was causing my falls, not that I was shit scared. Despite my fatigue and intrepidation we had a glorious couple of weeks being spoilt by Grandma, cousins, aunties and uncles at Bright, then camping with your cousin Aydin and family at Tumut, gaining refuge from the summer heat submerged in streams and the speckled shade of a pine plantation. On Sunday 6 January we drove home, with an unscheduled but cheerful delay in Goulburn when their car radiator announced it was much too hot for driving. That was the last day of that life.

Your life after

On that Monday, amidst swimming with your cousins and visiting your Gran and Grandad, you heard the words ‘motor neurone disease’. You must have mulled them over, because the next morning, as we all snuggled together in bed, you had questions: You’ll get better, won’t you, Mummy? But can’t the doctors fix it? How did you get it? And we, helped by my reading of MND Association booklets in the insomniac wee hours, had answers of a sort: This isn’t the kind of disease that gets better, sweetheart. The doctors and scientists are working very hard to understand it and make it better. They don’t know how I got it but we do know it doesn’t spread by touching or hugging or kissing and it’s not your fault. And whatever happens we will always love you.

As scheduled, we took you and your friend Mia into town to see a magical performance of Chitty Chitty Bang Bang, chain-skulling ice cream to cope with the sticky record-hot air. Before meeting the fabulous Dominic Rowe we instinctively followed his advice (take things week by week, try to make the most of each day, do it now!) and booked an overpriced long weekend trip to Tasmania: feasting on risqué art at MONA, freshly picked raspberries at Christmas Hills Farm, homecoming little penguins at Low Head, and a beautiful day of Cataract Gorge swimming, deep conversation, meringue smashing and Eton Mess gorging with Kris and Al and Lu and Nell, who nurtured you when those two wobbly front teeth finally made their bid for freedom.

We kept up the while-I-still-can memory making, most extravagantly that year and the next. The Easter Bunny delivered a giant Kinder Surprise to our hotel room in Sendai, egg for Easter, toy for your coincident seventh birthday, and the heavens also joined the celebrations with an unexpected dusting of Spring snow as we returned from a luxurious onsen soak and birthday cake with friends Kazue and Tomokazu and Yuino and Sayuka. Friends and cake featured at each stop on that Japanese trip, along with theme parks and cherry blossom and baseball and parties and Disney Sea. With Aunties Lexi and Sonia and cousins we flew North for crocodiles and rainforest and reef-snorkeling and visiting your FNQ-domiciled uncle. With Kathryn and David and Aydin we experienced desert sky stars (so many stars!), and you helped push me around Uluru and Kata-Tjuta’s Valley of the (ahem) Winds; and twirled glowsticks beside the ocean at Kiama; and enjoyed the beach and boardwalk at Port Macquarie. And we cruised New Zealand and gianted over Cockington Green with Vicki and Kate and visited Grandma and hung out with Kate, Richard, Laura and Eddy in Newcastle and spent leisurely days eating and watching crowds of crabs at the Bay with Pauline and Susan. And we went to the aquarium and art gallery and footie and Easter Show and Bobbin Head and stand-up comedy shows and James Morrison and climate change rallies and Aida-in-the-rain and with Emma and Jen saw Matilda the Musical and had pedicures and went whale watching with Lizzie and Pete. And more, much more.

Your beautiful Year Two teacher, Kylie Williams, gently nurtured you, and us, through that first year. She asked Grace’s mum, Donna, to coordinate offers of assistance, and for five years she rostered families and the after school care centre to provide two vegetarian dinners a week, giving you and your friends a practical lesson in community (a lesson you’ve had in spades as family and friends have surrounded us, providing lifts and meals and play dates and house tidying and birthday cakes and visits and love). The one time you were uncharacteristically naughty she rang to explain you’d been seen offering to shout friends at the canteen using the contents of my wallet (that afternoon your dad rang me at work so you and I could talk about it; it took great effort to remain straight-faced, straight-voiced as you hurriedly gushed ‘Sorry Mummy, bye bye’). When you wanted to raise money for MND NSW, Kylie organised for you and classmates to sell hundreds of MND puppies, and excited the school for weeks with a crazy hair day fundraiser, which climaxed with Mr Cowley having his luxuriant long locks shaved off before a hall full of shrieking primary school kids.

A journalist from the local rag covered the fundraiser and rang to interview me. You were thrilled to read the article about the event you’d inspired, but came to a line about average life expectancy of 27 months. You’d already quietly observed my decline – from managing with walking stick to needing a mobility scooter or walker, my arms and hands weakening, the dangerous falls – and figured out this wouldn’t end well. But 27 months? (In response to your questions I didn’t take up the opportunity for a lesson in statistics, emphasising that many live longer, not that many die sooner.)

That was the first of many acts of awareness raising. Each year you helped with another fun primary school fundraiser until Warrawee was overrun with MND puppies. You chortled your way through our ice bucket challenge, your challenge prompting the MND NSW team and your cousin Hannah to tip ice on themselves. You stood beside me in (gone, but fondly remembered) Ian Davis’s video campaign, sharing the TV screen with the likes of Serena Williams. You starred in MND Australia’s social media campaign, talking about how having a Mum with MND has shaped you; and in an Aged Care Channel documentary; and were filmed in an ABC News story about the NDIS. You and other family and friends have supported me at a Firies climb, Macquarie Gala, Days of Hope and Remembrance and on many MND walks. Earlier this year you and your gorgeous cousin Susy bravely stood up in front of your high school community and gave a speech we’d written together. Thousands of people have heard about MND through you, darling girl. I couldn’t be prouder.

I am so sorry, my Kimi, that you have joined the crowd of Australians in families with MND. I am sorry that you’ve watched me lose my ability to walk, to stand, to swim, to write, to hug, to speak, to breathe. I am sorry that you’ve had to lose a mum who can make lunch and plait hair and laugh out loud and take you into the ocean and work and bushwalk and hug you and teach you to sew and travel and demonstrate secret women’s business and lie next to you on the trampoline. I am sorry that you’ve had to empty my weebag, take me to the toilet, help lift me off, get help when I fell. I am sorry that you’ve had to become used to people staring, or quickly looking away, when we’re out together. I am sorry that you’ve had to adjust your life around my schedule and a house full of carers, including occasional dodgy experiences. I am sorry that you’ve had to stay home with me during school holidays. I am sorry that you’ve had to comfort me as friend after friend after friend died (and wondered, when will this happen?). I am sorry that you’ve had to arrive from school to the news an ambulance has taken me to hospital. I am sorry that last November you lost me for six hours, almost forever, and with your dad had to tell the doctors to try to revive me. I am sorry that you’ve had to consider options, a mum with a trachie and no voice box, or a mum who is dead. And I am sorry that you had to live with me in hospital for nine and a half long months.

And I am grateful, so grateful, to have had these 2474 days with you. I am glad to have been with you as you pleaded with me for a pet, and chose and fell in love with our Lucky Tiger. I am glad to have been with you as you sang in the primary school choir and performed at the Opera House. I am glad to have been with you as you learned to play saxophone, exhibiting your dad’s musical genes as you’ve aced exams, won at two solo nights and enjoyed playing with six school bands and busking with your cousin Hannah. I am glad to have been with you as you have joined Guides and discovered the joys of camping and ice blocking. I am glad to have been with you as you have developed as a reader, together encountering Hogworts and the dystopian Panem and the girls high school of Erin Gough’s Amelia Westlake. I am glad to have been with you as you entered (and exited) the strange hairspray-intoxicated world of physie. I am glad to have been with you as you celebrated friends’ achievements, and experienced the intrinsic value and school acknowledgement for working hard and doing good work. I am glad to have been with you as you have loved working with your team to develop an environment-sustaining technology and made the finals of the Australian Innovators Challenge. I am glad to have been with you as you have improved as an artist, doing a beautiful first oil painting with Jenny’s guidance. I am glad to have been with you as you have moved through primary and into high school, making new friends and becoming a whiz at science and history and maths and Japanese. I am glad to have been with you as you have become increasingly engaged with the world, laughing at the ridiculous and celebrating breakthroughs in social justice. I am glad to have been with you as you have had wonderful older cousins and are thrilled to have a new cousin on the way. I am glad to have been with you as you and your magnificent dad have become such a tight team, teasing and helping each other as you rise above the challenges this shitty disease keeps throwing at you. I am glad, so glad, to have been with you as you have grown from that 6 3/4 year old to a beautiful, kind, thoughtful, loving, resilient, talented, funny, curious teenager. I am grateful for each day, and glad there will be more.

3 thoughts on “Half her life

  1. Hello Kirsten.
    Sitting out at my computer which looks out into what could be a back garden drinking peppermint tea. It’s 10.00pm and I found myself out here with you after returning the frog who strangely decided to call our place home for the day, back to the front yard where it seemed another frog was calling out. After two of our three dogs went walkabout last Thursday night and one even stayed out overnight for an unscheduled sleepover, I could well imagine what the other frog was thinking…”I told you not to go in there. Why don’t you ever listen to me? Always off on some adventure…”
    That has nothing to do with what you wrote. I’m just setting the scene at my end.
    I absolutely loved reading this. Feels like you’ve got out the trusty old metal can opener and opened up your heart and your emotions are raw and jagged. Not all smoothed out and refined for others’ consumption.
    You offer a great role model for other parents following in your footsteps with MND or any other life-threatening or worse condition. As you know, this is something we have been through at our place too and I will never forget my son aged about 3.5 with his long blond curls looking at me in hospital and asking: “Mummy better?” Kids aren’t stupid. You can’t fob them off and yet how honest should you be, especially when you don’t know just how long that length of string might be? We both turned 50 this year and yet it was against the odds. Miraculous in many ways., but that doesn’t help the families who draw the short piece of string.
    I have been encouraged by one of my son’s friends who lost his mum to breast cancer and he hasn’t gone down the drain pipe and is doing very well at school and in his sport.
    Getting back to your story, I was very touched by the teacher and families who provided vegetarian meals for your family for five years. That’s an extraordinary commitment and I’ve never heard of anything like it. Such a heart-warming experience and reflects a true understanding of the ongoing nature of MND and similar.Also, shows the power of community and what we can do when we come together.
    Take care and I look forward to seeing you soonish.
    Love,
    Ro

    Liked by 1 person

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