Thank you to the The Grace Tales for sharing our story and spreading awareness for Batten Disease. Link to article below.
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.
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.
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.
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.
Bear Cottage a children's hospice in Manly asked us to write about Mia and the day we met Kate and William. The article below was published in the Bear Cottage News Letter Cottage Capers and Westmeade Hospital's Magazine.
Toby was very excited to perform for a 'real Princess' and took centre stage singing "Twinkle twinkle little star" when Kate arrived in the garden but got a little shy when asked to say hello to Kate.
"Mia our beautiful, affectionate funny and determined daughter was diagnosed in May last year with a rare neurological degenerative disease. It feels like that day was in another life before we had heard the term ‘life limiting’ or knew of Bear Cottage or listened to the words of our doctor, “Mia probably won’t make it to high school, we are talking about years not decades.”
Mia was born in 2009 a healthy robust baby. She met all her development milestones with ease. She was crawling at nine months, walked at twelve months and was a great enthusiast for baby sing song. She babbled early and was generally fine and healthy. Mia was an inquisitive, joyful baby and toddler, full of love and a little bit of mischief too.
Toby, Mia’s younger brother arrived on the scene in 2011, and we felt so lucky to have two beautiful boisterous kids. A baby boy and a two year old little girl with blonde curls commanding our household and keeping us on our toes and running circles around us.
Mia’s behaviour and language at this time were becoming challenging and we had some mild concerns which were allayed by her GP, paediatrician, and nursery teacher.
She was quick on her feet, loved scooting and racing around on her balance bike and everyone reassured us she would start to focus on her talking soon. The behaviour changes and concerns were explained by the ‘terrible twos’, the arrival of her younger brother and the upheaval of moving to a new home and Dad travelling regularly for work. As time progressed the concerns became more acute but nothing we believed couldn’t be overcome with dedication to speech, behaviour, occupational therapy, and a whole lot of love and patience.
In August 2012, aged 3, Mia had her first seizure. She had her second a month later and after various tests (EEGs and MRIs) Mia was diagnosed with epilepsy. Development delays persisted but we remained confident and hoped she would outgrow the condition. Unfortunately Mia’s health continued to deteriorate as her seizure frequency increased and her language and memory suffered. Mia began suffering frequent falls and lost the confidence to walk down steps or run.
In May 2013, nine months after Mia had her first seizure, she was diagnosed with the life limiting condition late infantile Neuronal Ceroid Lipofuscinosis or as it is more commonly known Batten Disease. Our hearts broke.
We immediately relocated to Sydney after seven years overseas to be closer to family. During those first few months settling back into home life was burdened with grief and was chaotic and confusing trying to navigate new medical, disability and education systems. Early on many we met mentioned Bear Cottage.
We eventually made it to Manly, only a ten minute drive from our home, for a tour with Narelle. The place was lively and light and friendly. Toby was super impressed with the trains and other children and Mia was mesmerized by the fish tank and Frankie.
We felt fortuitous to live so close by and eagerly accepted the offer to join in some music therapy classes, as Mia wasn’t yet enrolled in a preschool or day care. Phoebe’s music therapy is the best medicine. I love being in the garden watching Mia and Toby play instruments, engage with other children and enjoy the sunshine and enthusiastic singing.
Making memories for Mia has become a bit of a mantra in our household and it was in the garden at Bear Cottage that Mia met the Duke and Duchess of Cambridge. Kate sailed into the garden gracefully and joined in singing Twinkle Twinkle Little Star and we watched enraptured as she interacted with the children. She made her way around the group meeting each family and chatting. She listened so attentively to us and crouched down engaging with Mia which was very sweet and probably not very comfortable. Mia said the word “baby” and Kate replied “yes, I have a baby, baby George.’’ My husband was tapped on the shoulder only to turn and be face to face with Prince William “You must be Hamish, Mia’s father?” William was personable and engaging and complimented Mia on her beautiful princess dress.
It was a beautiful sunny day and we will cherish forever meeting the Duke and Duchess at Bear Cottage.
On the same day we met another family with a daughter affected by Batten Disease, which was moving and made the day even more significant for our family.
I read in the papers the following day that Kate said on leaving Bear Cottage, “inspiring but we’re also ready for a big sob.” I too felt emotional at the end of the day. For me it was inspiring being surrounded by so many beautiful loving families and feeling a part of a compassionate and caring community.
Bear Cottage offers us a place where we feel Mia is fully recognised and her days celebrated. We want to make every day count. We want to make her life matter, her time with us special and her days as fun and fulfilling as humanly possible. We cannot comprehend the future so we are living with our little family in the present.
We feel blessed to have family, friends and Bear Cottage who offer us empathy, strength, understanding, patience, love and creativity to help support us as we care for Mia and try to give her all the joy, respect and love she deserves."
This Easter we will be joining a group of families at Bear Cottage to met the Duke and Duchess of Cambridge.
There has been lots of excitement in our household about what to wear when one meets royalty. We caught up with the Daily Mail to chat about the upcoming visit.
Stories of our love, heartache and friendship. Written by a mother.