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."
Stories of our love, heartache and friendship. Written by a mother.