Honest and insightful conversations. Listen to The Grace Tales Podcast today

Photography: Julie Adams Hair and makeup: Sarina Zoe Words: Georgie Abay

We’ve had the privilege of profiling a lot of inspiring women over the past one and a half years but this week’s tale is the most special story we’ve ever shared. Peta Murchison also happens to be one of the strongest women we’’ve ever met. Mother to Mia, 5, and Toby, 3, she’’s warm, beautiful and incredibly courageous. She’s also caring for her five and a half year old daughter Mia, who was diagnosed with Batten disease or late infantile NCL in 2013. You might not have heard of Batten disease before, but it’’s a very rare degenerative disease, which is fatal and will rob Mia of her ability to walk, talk and see. In a few years it will take this beautiful little girl’’s life. This story is utterly heartbreaking, but it’s also an inspiring and moving tale of one mother’’s extraordinary strength and love and a reminder to cherish every single precious moment with your little ones, because life is short and you never know what is around the corner. So hug them, kiss them, squeeze them, tickle them, love them and remember how blessed you are to be a mother. It’’s also National Batten Disease Awareness Day on March 31 2015 and we’’d love you to get involved by joining the Bounce4Batten campaign (further details are below).

How would you describe yourself?
“Our lives have been so dramatically changed by Mia’’s illness it has forced me to stare down my deepest fears…. and then just keep breathing. I am immensely proud and protective of my children and family. I know I am strong. But then I often break down. These days, home is my sanctuary, but I still get a big kick out of being at the beach, in the country or just riding my bike.

How would you describe Mia?
Mia is five and half years old and loves horse-riding, swimming and music and is incredibly affectionate. She loves to laugh and smile and is naturally a very happy kid and rarely complains. Mia is miss popular at school and people tell me everyday how beautiful my daughter is, not just because of the longest eyelashes or her baby soft peachy skin and rose bud lips but because she is a beautiful resilient person. Mia is a delight and a privilege and we are very proud of our daughter.

Can you tell us about Mia’s journey?
Between two years of age and three years old Mia was scooting and racing around on a balance bike and loved swinging the highest at the playground and singing. Between her second and third year her language development slowed a little and some challenging behaviour arose. These mild concerns were easily explained away by all the big changes in her life, the terrible twos, a new sibling and moving country. Her nursery teacher and pediatrician reassured us that children develop in their own time and she was very active and physical, she was affectionate, her comprehension was strong and would start to focus on her language and sentence development soon enough. However a month after her third birthday Mia had her first seizure that frightened us. We remained hopeful she wouldn’t have another, but she did and many more. After numerous tests Mia was diagnosed with idiopathic epilepsy, we were hopeful Mia would grow out of the condition.  Unfortunately Mia deteriorated. As her seizure frequency increased and her language and memory suffered, she began frequently falling and lost the confidence to walk down steps or run. We tried new medications, attended appointment almost weekly, implemented a ketogenic diet and continued with speech, behavior and occupational therapies determined to give Mia every opportunity. It was daunting and confusing but there was always the hope that we would receive the right diagnosis and our daughter could be cured.

Mia had over 20 tonic–clonic seizures and hundreds of myoclonic and absence seizures during her third year and numerous tests including MRI’s and EEG’s. Our doctor suggested gene testing, ‘Mia is too high functioning to have any of these serious conditions but it would be useful to rule them out’. The gene testing confirmed Mia was deficient in an enzyme TPP1. In May 2013, nine months after Mia had her first seizure, she was diagnosed with the fatal condition called Batten disease or late infantile Neuronal Ceroid Lupoficionisis and our hearts broke. This rare genetic condition means Mia – our once healthy, confident child – has in the course of 2 years lost the ability to walk, talk, see and eat. Sadly one day it will also take her life.

When Mia’s doctor confirmed her diagnosis he said ‘Mia probably won’t make it to high school, we are talking about years not decades.’ We cannot fully comprehend a future without Mia, so we live one day at a time. We wish for Mia’s days to be full of all the love and joy she deserves and we hope for a cure, if not in Mia’s lifetime, then in ours.

What has motherhood taught you?
So much! Regardless of whether you’re a little baby or an elderly grandma or of your cognitive or physical abilities, everyone feels love, pain and fear and everyone deserves comfort, care, affection and respect. To not let life pass you by trying to make everything perfect. When Toby pulls my hand and wants a bounce on the trampoline that urgent email or unpacking the dishwasher can usually wait until after a hug, a story or a game. That sorrow and joy can exist simultaneously. I can be heartbreakingly sad, but still have a joyful life. Our sad journey (that I would do anything to change) is also a great privilege in many ways. I am now far more open to truly sharing my life with friends and family.

What did your own mother teach you about motherhood?
That the most important person to love is yourself. On my first day of kindergarten the teacher asked us to draw a picture of someone we loved and at five years old I drew a self portrait! But it was an important lesson and one so valuable to me today. I have to remind myself to be kind to myself so that I have the energy and love to pass onto my children, husband, friends and family. I was told once that it’s like being on an airplane: in the event of an emergency you fit your own oxygen mask first before assisting children, so I try to keep myself strong and in balance so I have the strength and compassion to pass on and care for Mia and Toby.

Can you tell us about your career prior to having children?
My work life feels like another lifetime ago to be honest. After an arts degree I fell into working in the advertising team for magazines and while I loved the team of incredible women I worked with and the beautiful brands I worked on and the creative element, I don’t think I was ever a natural fit as a sales person. I left my job in Australia 8 years ago to start a grand adventure overseas with my then boyfriend Hamish. But just weeks before I was due to leave, my sister died from suicide. I did eventually join Hamish overseas but losing my sister truly devastated me. I am still a little miffed about my abandoned career and not 100% comfortable saying it out loud. I have stayed friends with many of the women I worked with and it has been wonderful to see all the different directions they have taken. I hope one day I will be able to relaunch myself back into the workplace. But for now I am proud to say I am a full time carer and stay at home mother. Caring for Mia and Toby and cherishing our time together is my absolute priority. It is a 24-hour role full of care, therapy, medical appointments and constant challenges, but it is a privilege and I am determined to give Mia and Toby all the joy and love they deserve.

You’ve lived abroad before – did you enjoy living overseas?
Mia was born in Dublin and Toby was born in Singapore and the women I met in both countries are what made those experiences what they were. The women in Dublin were so generous lending clothes and baby equipment and hosting us it was our family away from home. Our beautiful landlord in Dublin was like a second mum and made Mia the most precious quilt and gave her an exquisite 1st birthday dress I adore. In Singapore I made friends for life with an incredible network of creative and passionate women. I look forward to the day many of them return back to Sydney.

Can you tell us about your home?
We bought the house while we were living overseas without seeing it (other than photos). Family did the inspections for us and Hamish agreed the purchase over the phone from the other side of the world. We hadn’t planned on living here so soon. But after Mia was diagnosed in 2013, we knew we needed to come home. It’s a simple brick home and I love it. It’s open plan and all one level so it’s ideal for navigating Mia’s wheelchair. I can see the garden from the kitchen and living room so when I’m caring for Mia, I can spot Toby tearing around the backyard chasing the dog. My father-in-law is amazing and built a ramp at the side of the house for Mia and my creative brother-in-law laid the recycled brick paths for wheelchair access and made our sandstone garden beds with a little bit of help from Hamish (the extent of which he exaggerates!). My sister-in-law and I even lugged a couple of bricks so the backyard was a family effort and a true labour of love. It’s relaxed and peaceful and is a sanctuary for Mia.

Can you tell us about Bounce4Batten?
This year we will be bouncing! Bouncing joyfully and whole heartily and having fun. Receiving our daughters Batten disease diagnosis was the hardest way to learn how precious and short life is. Bouncing was one of Mia’s favourite things in the world and still is. These days Mia might not be bouncing independently but the movement always brings a big smile to her face. Bounce4Batten is focused on raising awareness for Batten disease. Batten is a rare, debilitating and fatal condition affecting children. ‘Bounce4Batten’ was launched in 2014 by our family and friends and was inspired by our daughter Mia who loves to bounce. We hosted a party in our backyard with a bouncy castle and trampoline and invited friends to pop over for a bounce it was a festive atmosphere and the support and joy was overwhelming and a memorable day. The concept was for friends and family to promote Batten Disease by bouncing and posting photos on social media. The joyfulness of bouncing delivered a message of awareness resonated. The reaction was fantastic, friends and friends of friends from around Australia and as far afield as New York, Singapore, and Paris bounced and posted. In 2015, we hope to spread the joy even further and create awareness or all Batten children and their families. One day soon we hope to play a part in finding a cure through supporting research via the National Charity organisation Batten Disease Support and Research Association a donate button can be found on our website. We are encouraging everyone to bounce and spread awareness for the upcoming Batten disease awareness day on the 31st March. Bounce4Batten is a simple concept but we’re hopeful it will make a positive splash and people will support a cause very close to our hearts.

How do you get through the darker moments?
I sometimes think of this as our beautifully sad journey. It’s not all doom and gloom because we do have to get on and live everyday and it definitely has a profound effect and gives so much clarity to what is important and the incredible people and love in our lives. In many ways I feel so blessed and at the same time sad beyond any words. I cry a lot and find going with these feelings and letting myself be sad is often helpful and allows me to be aware of my grief and not fight it which often makes it worse. I sometimes feel that I’m caught in a big set of dumping waves being tumbled and jumbled and just as I catch a breath another set comes. It’s almost more sensible to save our energy take a deep breath and ride the waves being softly confident calm waters will return and we’ll be floating over the top peacefully again soon.

What are you most proud of in life?
Besides my beautiful children and incredibly supportive and balanced husband, riding my bicycle to the top of Mont Ventoux in France and passing a few serious looking men on the way.

What’s the hardest and best part of being a mum?
Letting go (gosh, I sound like a Frozen sound track) stepping back and letting Toby learn from his own mistakes. The lessons Mia and Toby teach me about having fun and unconditional love.

What makes a happy home?
Patience, listening and being graceful under pressure. Team work and kind words. Not letting all the responsibility fall on one person and constantly checking in and pursuing a meaningful connection and respect for each other. Affection and laughter and hugs and tears.

What is your favourite time of the day?
It’s a bit of a cliché but once bath time and dinnertime are over and the kids are in their jarmies, it might be a game, stories or a song. Either Hamish or I sleep alongside Mia as each night is a challenge and she wakes regularly and is at risk of life threatening seizures. Holding her tight and stroking her hair is calming even in the middle of the night, I remind myself I’m blessed and so pleased to have a moment and time with her and wouldn’t want to be anywhere else. It’s these moments of contentment I love … I don’t think I can really comprehend what it will be like when that snuggling soft hug isn’t there and that is my biggest fear of how broken I will be and how much I will ache to hold Mia. My other favourite moment is after a long week when Hamish sends me a text to say he is on his way from the airport and the relief, love and excitement of having him walk through the door.

Peta’s little list of loves:
My beautiful friends and neighbours who drop over food and fun things for the kids like tadpoles and books for me and offer to take the dog for a walk or put our bins out when we’re away.
Salt water: either a dip in the ocean or a good cry is so good for my soul. The saltwater leaves a sense of calm and relief.
The Get Some Headspace app is one of the best things for me and my mental health. I love having a practical tool to teach me how to be more mindful and it helps me reframe or give new perspective to my thoughts and I think has been invaluable for helping my relationships and any anxiety. I also don’t mind Andy’s voice.
I love our little garden. I’m new to the whole gardening thing and have found it very therapeutic. Nothing better than watching something grow. The kids have trees named after them and Toby loves watching our strawberries, cucumbers, zucchinis, edamame grow – although tends to pick them a bit green (and feed them to the dog!).
I love floral prints and pretty materials and soft cottons. Ive got a stash of beautiful Liberty Fabric and lace from my travels with the hope I’d become a better sewer, but that is best left to my clever mother in law who makes gorgeous dresses, tops, pants, quilts and bunting.
The amazing women in my life especially my mum, aunts and sisters (in laws) and Hamish’s mum too. My brother in laws and our dads are very special too. We are lucky to have the practical support and close relationships.
Some one to share my journey with, Hamish and I have certainly had our relationship tested and I hope the foundation we are building and the strength of our relationship is strong enough to endure whatever life throws at us.
I love people’s kindness and the lovely messages we receive and the courage friends and friends of friends show when they reach out. It’s tricky and sometimes the right words don’t come easily or eloquently but it’s a look in the eyes or a nod or a tighter hug and you know people feel the helplessness and wish there was something they could do to change it all but they want to connect and want it to be better for Mia and alleviate some of our heartbreak.
I love flowers and for the cut version my gorgeous friend Georgina from Lilac and Willow is simply the best. They are in Rose Bay but are super convenient when Id like to send someone flowers in the east or city and just delightful.
I love fresh air and being active. I now see exercise as such a privilege and luxury and rather than having to flog myself and feeling guilty trying to get that bikini bod. Either wizzing down a mountain on my swish bike or peddling around the corner taking Toby to school. I love just riding our bikes and it reminds me so much of being a kid.
I love journaling my thoughts and anecdotes of my days with Mia and sharing her story with friends. I want a personal record of our time and what it feels like holding Mia, how she smells and how her eyelashes curl and the softness and essence of her. Photos and videos will be treasured too but I am desperate to capture every aspect of our time and the writing may do that for me in an emotional sense.

National Batten Disease Awareness Day is on March 31 2015 and we hope you will support Peta and Mia by joining the Bounce4Batten campaign. It’s easy – and fun! Post a photo of your little ones (and yourself if you’re in the mood for jumping!) bouncing up and down to support the cause. With your photo, just include the hashtag #bounce4batten and follow @bounce4batten. We will be posting our favourite images on our Instagram feed.