Bounce stories

Escaping

3/11/2018

We survived the Aussie pilgrimage (barely) and yes Noosa is all its cracked up to be. The Shangri La end of the torment of endless driving, crap food and a casual trip to casualty.*

Quiet and moody when we arrived. Perfect for us and such relief to be navigating just each other, food and sleep and not much else. Sea swims, bush walks, ice creams, fishing, naps, and nature. Jasper happy crumbing himself in the sand and tasting the crunchy particles while Toby and Hamish paddle and catch waves.

Making like a little ‘happy’ family doesn’t quite fit comfortably. But the space from the world and routine that mark our stark contrast of before and after Mia is a reprieve. My thoughts everyday and dreams are filled with Mia but not an aching or utter sadness. Like the soft gentle tears that silently roll off my cheek. I like crying, it’s a connection, something I see, hear, read, smell or her noticeable absence or a cheeky memory. I had anticipated sobbing, an aching longing pain, a sense of mourning. It’s early days but like Mia the grief is gentle and warm and somehow comforting. It’s life that gets in the way and feels more difficult to tackle.

Small innocuous moments surprise me. Ones I couldn’t really prepare for set me slightly off kilter. The pretty dresses hanging in the shop front. The gaggle of girls cartwheeling confidently, skating and carrying their board towards the water. I’m not envious but curious of them. I’m looking forward to watching Mia’s friends grow up but it feels different, I’ll be even more on the sidelines, a distant cheerleader.
The friendly mum banter in the playground feels clumsy, I second guess my automated responses, “Is he your first?’“How many children do you have?” The barista emphatically declares how lucky I am being on holiday with all my family, surrounded by handsome boys. I notice and mentally calculate space and difficulty of access to cafes and restaurants, every ramp and staircase is accounted for. Could we have had a holiday like this with Mia? Probably not.

There are bright moments between the cloudy days. A walk through the bush, dip in the ocean, an empty beach all to ourselves except for dolphins passing by, followed by an impromptu lunch. Blue sky, sparkling sea, thoughtful food and two compliant children.
The waitress recommends the pretty pale pink rosé, ‘it’s called Whispering Angel’. We order the rosé and toast our beautiful girl.
I am lucky. Surrounded by my boys and escaping the world. I am sad too, miserable. H squeezes my hand and glances at me. Silently we congratulate each other having survived another moment. Tears spill, we share small smiles.

The little boys seem fragile at times too. Toby waking in the middle of the night, one of us lying with him until he drifts back to sleep. Jasper happiest in our arms of course.

We venture home more slowly, visiting friends, family and godparents along the way. Better to break up the trip for Jasper and we aren’t quite ready to immerse ourselves in the regular routine at home, what ever that will be now.

Toby is in his element amongst the trees, sea, big sky and fresh air. Collecting chicken eggs, making fresh orange juice picked straight from the trees, feeding calves and the thrill of a motorbike and lots of space. Drawing, painting, blackberry picking, fishing, dolphin and whale spotting, bike rides and walks. It feels more like a holiday now, strangely wonderful and upended all at the same time.

It is such relief to eventually arrive home, to sleep in our own beds with our own comforts and smells. Sadly a little fleeting, adjusting to life at home is awkward. The fever and urge while away to organise things, tackle projects is not as easily executed as anticipated. I feel overwhelmed. A little lost in my own home without the delineation of Mia’s strict routines. In contrast the boys seemed to slip back in at home so easily. Jasper sleeping through the night without the holiday wake ups and early morning calls. Toby eager to be back at school for the last week of term and chuffed to be captain of hide and seek tip. Hamish delighted by his new found freedom away from work (so grateful work have accommodated this time for him and us) busy building and constructing timber projects on our deck. Throwing himself into project after project, possibly the perfect combination of good therapy and distraction? I hope his dream to build a little hut with his own hands for the ultimate escape (at Yaouk) comes to fruition. He’s pretty determined.

Adjusting to life without Mia is confusing. There’s a distinct emptiness a void in our home and hearts. I feel lost at times. And in so many ways life is easier, some days feel like a breeze being able to achieve and do more and I remind myself a reprieve from her suffering. The sadness and exhaustion is slowly ebbing all around as the adrenaline fades. Life is moving too fast for me, for now.

*plagiarised from Deborah Cornwall’s text message.
*A detour via John Hunter Hospital after Toby mistook a thermos of hot tea for a water bottle.

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Thank You

24/9/2018

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Shortly after Mia died a GoFundMe page was set up to accept donations in lieu of flowers and to recognise the charities that supported Mia throughout her life.
We have been overwhelmed by all our friends near and far who have so generously donated. Thank you to everyone who made donations in Mia's name, it is lovely to be able to help these charities that carry out such important work and positively contributed to Mia's life. Below is some more detailed information about each of the charities. We plan to close down the fundraising page in the next month or so and organise cheques for each of the charities.

We feel very proud to be able to recognize the charities that supported Mia’s joyful life. All monies collected will be distributed to the charities described below.

Bear Cottage
Riding For Disabled
Guide Dogs
Batten Disease Support and Research Association

Bear Cottage

www.bearcottage.chw.edu.au

Bear Cottage is the only children’s hospice in New South Wales. Bear Cottage provides support, respite and end-of-life care for children with life-limiting conditions and their families, in a warm homelike environment. Caring for a child with a life-limiting condition changes a family’s life forever. Exhausting, rewarding, sometimes positive, often painful. Bear Cottage is a place where respite is possible.
Bear Cottage provides excellence in paediatric palliative care 24 hours a day, and is affiliated with The Sydney Children's Hospitals Network which means they have access to some of the best medical resources in the world. As we live very close by to Bear Cottage we were able to fulfil our desire for Mia to receive end of life care at home with the support of the nurses and staff from Bear Cottage.

Riding for Disabled

www.rdaryde.org.au

The Riding for the Disabled Association NSW is a non-profit organisation which enables children and adults with disabilities to enjoy and achieve physical, social, psychological and educational progress through participation in therapeutic horse riding programs and horse related activities.
The Ryde Centre where Mia participated in horse riding is run entirely by volunteers. Riding for Disabled rely on the generosity of individuals, grants, community groups, local businesses and fundraising to raise the funds required for day to day running expenses for the centre. This includes activities and programs for disabled riders and paying for horse related expenses such as vets, farriers and feed bills.

Guide Dogs

www.guidedogs.com.au

Shorty after Mia’s diagnosis she was given a therapy dog called Bon Bon (pictured) by the Guide Dogs. Guide Dogs NSW/ACT is the leading provider of Guide Dogs and orientation and mobility services that enable people with impaired vision to get around their communities safely and independently.

When most people think of the organisation, they generally think of Guide Dogs. But a Guide Dog is just one of the ways in which they support the community.

Guide Dogs NSW/ACT also provides a variety of support services such as the Pets As Therapy (PAT) Program to assist those whom experience behavioural, emotional and mental health conditions, physical disabilities, or isolation caused by age or illness.
Therapy Dogs can improve quality of life by reducing anxiety, increasing physical activity, a sense of community and well- being, encouraging routine and commitment, and of course providing non-judgemental and unwavering friendship.
The PAT Program as well as all Guide Dogs NSW/ACT services are provided at no cost to clients. Guide Dogs are financially dependent on the generosity of the community to allow them to continue to help more people.

Batten Disease Support and Research Association

www.battens.org.au

BDSRA Australia is dedicated to funding research for treatments and cures, providing family support services, advancing education, raising awareness, and advocating for legislative action. It was founded in 1995, by parents seeking to build a network for those diagnosed with Batten disease.
Batten disease (Neuronal Ceroid Lipofuscinoses) (which affected MIa) is an inherited disorder of the nervous system that usually manifests itself in childhood.Over time, affected children suffer mental impairment, worsening seizures, and progressive loss of sight and motor skills. Children become totally disabled and eventually die.

BDSRA believes that to effectively unravel the mysteries of Batten disease, the worlds of medical science, research, and families must work together toward a common goal: discover treatments and cures while assuring a better quality of life for those living with the disease.

This Association is a registered charity and is operated entirely by volunteers with no Government funding.

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Mia's Memorial

28/8/2018

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Tuesday was the most beautiful day and one we will hold onto forever. Thank you to everyone who came to remember and celebrate Mia. For those who wanted to be with us but could not, we wanted to share some of the moments from our day with you.

A very special thank you to our dear friend Andrew Flakelar who put together the film that played at the end of Mia's service (you can watch the video below).

Thank you to everyone for their kind messages, words and cards.

The sublime smell of roses lingers through out our entire house and our front door has never looked so spectacular.

With love & tears, Hamish, Peta, Toby, Jasper & our bright shining star Mia.

Photo: Andrew Flakelar

Our Mia playlist

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I’m not going anywhere

11/6/2018

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“I’m not going anywhere,” her small voice resounded. A defiant nod to her power and feisty nature despite her petite size.

“I’ll assault you when you least expect it, I’ll come and say hello when ever I need to and sometimes I don’t even say a word, but I’ll always be with you.
You can try and ignore me, try and figure me out. What ever you do, I’ll always be one step ahead of you, ready to surprise you and bring you to your knees.

I’m not malicious or cruel. I’m small and I’m right here. I’m love turned inside out and upside down. Don’t you hear me reflected in your world? In everything you smell and see and hear?
Why aren’t you listening to me?
I’m not ever going away.
I’m in your heart and in your head and etched deep within your soul. Please don’t complicate me. I’m the innocence of a child and the wisdom of one thousand women. You can never break me or navigate your way around me.
I am a solid wall, transparent and fluid like the ocean too.

Don’t worry. I’ll always be with you.”

My grief.

Peta Murchison

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Watch Bounce4Batten founder Peta speaking at The Sydney Opera House Tedx Event in 2016

25/5/2016

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It's time to #bounce4batten for Mia!

31/3/2016

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Thank you to the The Grace Tales for sharing our story and spreading awareness for Batten Disease. Link to article below.

http://thegracetales.com.au/its-time-to-bounce4batten-for-mia/

Julie Adams photography

Julie Adams Photography

Photography Julie Adams

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Speaking at NSW Parliament House For Lifestart

25/11/2015

Peta & Hamish Murchison with The Hon John Ajaka MLC, Minister for Ageing, Minister for Disability Services and Minister for Multiculturalism

Good Evening Ministers and friends.

I'd like to talk about the power of magical thinking. Don't worry I'm not going to talk about rainbows and unicorns.

It's two years since our once healthy daughter Mia was diagnosed with a rare genetic condition called Batten disease – she will be lucky to make her 10th birthday.

Mia was just about to turn 4 at the time of her diagnosis. She had been running around, singing songs and starting to count just like any other typical toddler – out of the blue she started having seizures…. and just as suddenly she was struggling to walk and talk.

So began our initiation into the confusing world of disability services – where Yes often means No. Where you are completely consumed just trying to navigate your way through a maze of hospital visits, access to education and equipment, funding issues, excruciating wait lists and of course piles of paperwork and endless red tape.

In the beginning Hamish and I simply believed what we had been told. How lucky we were to live in Australia – a country where the disability laws and policy settings were all about ensuring children like Mia led as normal a life as possible. That she would be welcomed to the child care centres and schools of our choice.

But what we quickly discovered is that even though denying access to children like Mia is against the law – in the disability world Yes does often mean No.

Our first shock came when we tried to get Mia in to the local community preschool she’d been enrolled at since her 2nd birthday. We had naively assumed Mia would be welcomed with open arms. But from the first meeting with the preschool director it was clear she saw Mia as a burden. Getting the funding for capital works was a major headache she told me. And what about the impact on the other children – the stress on her staff? Our 3 day placement was immediately dropped to just 2 days – and she strongly urged me that for Mia’s sake I really should consider one day a week or better still half a day!

Mia and I left that meeting in floods of tears. I couldn’t comprehend how this woman could be so concerned for everyone else except us - we’d just been told our beautiful child had a fatal illness and the preschool we’d always planned she’d attend was essentially turning us away.

That meeting at the preschool was such a shock I decided I should start preparations earlier with a local primary school– just to make sure they would be ready to take Mia when she turned 6 in 2 years time.

I was stone walled again. This time I didn’t get any further than the school receptionist. She didn’t see the point of setting up an appointment with the principal so far ahead of time. And she told me it would be almost impossible for Mia to attend there anyway because all the kindergarten classes were on the 1st floor.

I realised finding a school focused on inclusion was going to be more difficult than I had first anticipated.

After a few tours of schools for specific purposes there was a disconcerting process of Mia being put forward to a panel which determined – without any parental input or information of when the panel would be held or who would be in attendance – which school was most suitable for our child.

Luckily at this point the panel selected the preferred school we had visited.

Mia made friends instantly. But we discovered the limitations of sending our child to a small special needs school. At a time when we were already feeling isolated the school was tucked away and not many people in our local area had ever heard of it or even knew of it. Most of the parents relied on transport so there wasn't much sense of community, no play dates and we often felt kept at arms length. We always felt uncomfortable with the teachers referring to the children as "walkers or chairs".

It was at this time we were introduced to LifeStart - a breath of fresh air.
Our key worker coordinated round table discussions so Mia's goals were supported and helped us to make some progress so that everything didn’t fall through the cracks. Julia stepped in when necessary but allowed us to navigate. The processes were logical and helpful, she was always available and had a network that supported her offering practical resources and insightful information.

When Mia’s support teacher and two best friends left the school a year later things quickly fell apart. If Hamish or I arrived early to collect Mia from school it was common to find the students in the playground with out any engaging activity. Lined up against a wall just far enough away from the next child so they couldn't touch each other - it was heart breaking. In the classroom watching YouTube and videos was typical. Mia missed her friends Lukie and Poppy pushing her wheelchair and trying to cuddle her. The students in Mia's new class all had similar mobility and communication skills to her. It impacted Mia immensely all her physical and verbal interactions with her peers had vanished and school was no longer stimulating or fun. Her teachers also struggled to push all the wheelchairs in the classroom around the school at the same time. Collecting Mia from school one afternoon in April this year she was completely soiled through two nappies and her tracksuit pants, I met with the school the next week with our key worker to discuss our concerns and hopeful to resolve them but I left very disappointed and concerned about the care Mia would receive so withdrew her without another school to go too.

By this stage we couldn’t even throw money at the problem. Mia’s condition had deteriorated and we were told she wasn't eligible for the private school for children with disabilities because her needs were too high. And the alternative school the government selected for Mia wasn’t appropriate.

According to our disability liaison officer and network director from the department of education neither of whom had ever met Mia she wasn't suitable for mainstream school, they suggested home schooling to us. They also labelled us, pretty quickly I might add as another difficult family.

This is where the magical thinking comes in. Hamish and I have always been determined to give Mia the happiest, most loving and magical life possible.

That meant allowing Mia to experience life in a mainstream school. It was only a distant dream, and felt like we pushing the boundaries and I was scared I was setting us up to fail but we had to give it a shot.

Finally we met with our local primary school and honestly it felt like coming home after a really crazy long journey.

The colourful, bright classrooms. The singing, the happy buzz. I was already imagining us rolling down the hill from our house with no more lugging the wheel chair in and out of our van. Mia's cousins were part of the school so we knew children there already many of our neighbours kids and our younger son would eventually go there too.

It's six weeks since Mia started school at Harbord public. And you only have to look at this photo of Mia, surrounded by her classmates reading to her and holding her hand, to see how much it has transformed our lives – and the lives of those around us.

Being included in a vibrant, caring school community has offered up the support and connection we craved. its brought a warmer dimension to our lives with new friendships that will last and sustain us beyond Mia's lifetime.

The school principal is everything parents hope for..….He was empathetic about all the hoops we'd jumped through to get to this point and apologised for the bureaucratic processes. He stopped to ask us our hopes and dreams from the outset and never implied anything was too difficult.

Inclusion might not be taught as part of the school curriculum but I don't think anyone could have anticipated the positive impact Mia has had on her new teachers, peers and parents. Kindness, empathy and acceptance are beautiful qualities to foster in our children.

An older student smiles at me everyday when I passed her in the playground, she acknowledges Mia warmly. Surrounded by a little gaggle of friends one day she proudly tells me her sister Bianca uses a wheel chair too
"Mia is the best thing that's ever happened to our daughter Rose". I was told by the 6 year olds mother one afternoon, I've heard this sentiment from many parents over the past few weeks, at the recent P&C meeting parents and staff mentioned how positive its been having Mia join the school.

Mia is going to Chloe's 6th birthday party this Saturday and John's in a couple of weeks. Last Sunday was spent at an end of year class picnic and it was a magical day.

Without the support and encouragement from our key worker Julia and the team at LifeStart who helped navigate obstacles, were my sounding board, offered strategic and goal orientated support, came to meetings at the schools, offered insight into processes, encouraged and commiserated. Always with Mia's best interest at heart. Mia would not have made the transition to Harbord public school.

Thank you LifeStart for your support and helping our magical dream become our reality.

Mia surrounded by her friends.

I cried at the Park today

16/9/2015

I took the short cut and was powering through the local park to pick up a much needed coffee. At the last minute I decided to detour towards the swings, slides and mums huddled chatting with kids squealing. A quick rest for Mia to have some time out of her wheelchair on my lap and a little breather might be best.

Wearing a big floppy hat (my sensitive skin doesn't agree with UV) sunnies and ear buds stuffed in my ears (I'd been multitasking and taking some calls while I pushed Mia in her wheelchair) I was slightly incognito and cocooned in my own shields. How ingenious I thought congratulating myself - a little apprehension and dread crept over me on my approach but I felt a bit more protected - how would we be received today? We've had plenty of previous experiences to make our entrance with slight trepidation. Accustomed to what feels like jaw dropping looks of horror followed by people backing away or looking intensely busy, or the naturally curious child who gets scolded for staring as the embarrassed parent grabs their child and heads for the hills. I get it. It happens you don't know what to say all the time. Kind people occasionally handle things awkwardly and don't know what to do or you have an off day and others I presume are just scared. I've been there too and done an abysmal job at handling the situation. I still flush thinking about the time my son demanded at the top of his voice in a tiny little cafe for me to "Mummy! look at that big fat man eating all that breakfast - his tummy touches the table" it's embarrassingly horrible and it's not much easier on the other side

We found a shady spot on a bench at the edge of the playground and I smiled, unconsciously attempting to show everyone we were friendly - promise we won't bite! I parked Mia next to me and got comfy on the bench and started to pull down some of my shields. A blue eyed blonde haired 2 year old stood a safe distance away from us staring curiously - I beamed at him and in my friendly sing song voice I said "this is Mia you can come and say hello if you like, how old are you buddy?" A beautiful young woman full of warmth and enthusiasm encouraged him a few steps closer and we started chatting it was easy. Her charge looked a little bit bewildered but with some encouragement from their vivacious nanny we were having fun exchanging introductions and noticing how similar Mia's name was to the little boys big sisters, they reached out and touched Mia's hand and we continued with the regular playground mum/carer banter.

The lovely mum sitting alongside me joined us and the conversation flowed as the bright nanny bounded away to play and chase. We both enviously commented on how fantastic she was and kept chatting. We shared our stories and started bonding. She commented on how beautiful my daughter was and seemed genuinely interested. After our bonding session we exchanged numbers and hugged - at this point I cried and we both confessed how much we'd enjoyed meeting each other and promised to catch up for coffee

A beautiful duo about 5 and 3 approached us babbling excitedly. The older girl was talking emphatically and explaining something that seemed very important for us to know. Her father from across the park shouted "she doesn't speak English" to which I responded cheekily "nor does Mia" both the little boy and girl continued to chat to us in Greek and embraced engaging with Mia eagerly, stroking her arm and holding her hand and telling her wonderful stories. With some translations back and forth from dad and holding up fingers we discovered Mia being 6 was only one year older than the friendly little 5 year old girl. Their affection and warmth was palatable and they had some beautiful little 'conversations' and Mia adored the attention and affection.

As we wheeled out of the playground I said goodbye to the Greek dad and told him how friendly and beautiful his children were - only having arrived in Australia a week ago they were living in a family home which was apparently beautiful but a broken oven that had already cost $600 to repair unsuccessfully some general chaos and disrepair on top of not knowing anything he relayed. He was breezy and confident and seemed unperturbed, possibly elated about this new situation, his gorgeous children following in suit were adventurous and had no qualms making new friends with or without a common language. Waving goodbye to the little boy and girl we said we hoped to see them at the park again soon.

The Grace Tales

1/4/2015

We had a very special afternoon with talented photographer Julie Adams, gorgeous Georgie Abay founder of The GraceTales and Sarina Zoe who made me fabulous for the photos with flowing hair and make-up. Toby fell asleep on the couch shortly after the team arrived and wasn't too keen to smile for the camera when he arose but Julie worked her magic and the girls were so relaxed and gorgeous that he came around ... eventually. Mia lit up with her smiles and giggles and made some new friends of course. Thank you for the opportunity to share our story it was very cathartic to write it down and we are grateful for the opportunity to let more people know about 'Bounce4Batten'. To read our interview please visit The Grace Tales.

http://thegracetales.com/the-tale-of-peta-mia-toby-murchison/

Photo: Julie Adams

A doctors visit

23/10/2014

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Walking into the busy waiting room at royal north shore hospital today, I feel conscious of eyes turning to look at Mia and I. A small area with 9 busy specialist rooms and their numerous respective waiting patients. A quick survey and I head for the corner with the box of toys, some children's books, a water filter and rubbish bin. I head to the lone vacant seat, a little relieved I won't be compelled to make polite small chat and answer any questions about Mia.

I usually don't mind chatting and can often find myself over sharing with strangers but I already feel very conspicuous especially as there are no other rowdy children around to dispel the quietness. Everyone is probably just admiring my beautiful daughter I tell myself but at the same time I naturally avoid making too much eye contact and possibly sympathetic stares. I navigate our way across the space trying not to bump Mia's wheelchair into anyone, choose a story book and spin Mia around so her pink wheel chair is facing me ready to read our story together. We settle in until it is our turn.
A woman with long brown hair possibly in her late 40's rises from her chair and pushes her walking frame towards us. I look behind me to a narrow corridor thinking we might be blocking her way to the toilets. I realise she is heading straight for us. I look up at her thinking she is going to ask me how old Mia's is or about her condition but she leans over and as I wait for her question she gently holds my face and kisses me on the cheek.

I'm not sure if she says thank you or something similar, I am completely taken by surprise and feel something close to rage or indignation for less than a heartbeat before it melts away and then I don't know what or how I feel. Maybe grateful, possibly guilty, definitely surprised and most certainly very conspicuous in that room. She turns and makes her way back to her chair. I bow my head and cannot help but feel her kindness and gratitude and empathy. I feel humbled and grateful for my kiss, not enraged. She acknowledged Mia and I and that feels good.

I can't recall ever being kissed by a total stranger before. We don't say anything. Tears start down my cheeks and I ignore them and let them drop onto my printed pants. I don't want to have to wipe them away with my hands and I remember there aren't any tissues in my bag so it is pointless to rustle through it.

I return to occupying myself with Mia feeding, playing and holding her. Maybe everyone in the room is oblivious but I'd like to think they feel the acceptance, recognition and warmth we do from this stranger.

Our name is eventually called and as I walk into the doctors room I glance back and we wave and say our silent goodbye to each other.
Our uneventful doctor's appointment finishes and I wheel Mia back into the waiting room. The stranger has left.
It was an unusual encounter but her gesture was so brave and powerful. Sometimes words don't suffice.

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<<Previous

Escaping

Thank You

Bear Cottage

www.bearcottage.chw.edu.au

Riding for Disabled

www.rdaryde.org.au

Guide Dogs

www.guidedogs.com.au

Batten Disease Support and Research Association

www.battens.org.au

Mia's Memorial

I’m not going anywhere

Watch Bounce4Batten founder Peta speaking at The Sydney Opera House Tedx Event in 2016

It's time to #bounce4batten for Mia!

Speaking at NSW Parliament House For Lifestart

I cried at the Park today

The Grace Tales

A doctors visit

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Bear Cottage​www.bearcottage.chw.edu.au

Guide Dogs​www.guidedogs.com.au

Batten Disease Support and Research Association ​www.battens.org.au​

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Archives

Categories

Bear Cottage

www.bearcottage.chw.edu.au

Guide Dogs

www.guidedogs.com.au

Batten Disease Support and Research Association

www.battens.org.au