FOREWORD By Teresa Palmer
I read Peta’s article one night after having a particularly challenging evening with my two little loves and suddenly I was crying like…well a baby! The hope, the love, the courage and the goodness that I felt from this family just floored me and moved me to the point that I immediately did an insta-stalk, watched Peta’s Ted Talk and proceeded to read the article to Mark whilst a blubbering mess. I was hooked on the beauty of this family and knew in my heart that I wanted to do everything I could to help them in anyway possible. The best way I could do that is to help raise awareness for Battens Disease. So here I am! And I ask you all to join the #bounce4batten campaign on Peta’s Instagram. Check it out and be as inspired by this family as I am.
Sipping a cool drink, listening to the sounds of waves in the darkness. We have retreated to a small coastal town, cocooned on the couch our legs tangled. Both our children asleep with us, we have a rare quiet moment all together.
My husband holds our daughters hand in his, wrapping both his big palms around her soft hand. He raises her hand squeezing it tightly between his, her smaller hand enveloped he kisses it gently. I can see the tears welling in his eyes as he leans over admiring her sleeping peacefully.
Almost inaudibly he mumbles his voice cracking a little “what a waste”.
She’s so beautiful.
“She would have given us a run for our money”, I quip more lightly. Hamish laughs and we reminisce our 7 year old daughters fiercely independent spirit and the lack of approval she sought, compared to her little brother Toby. Mia has never been a people pleaser and knew exactly what she wanted and how to get it and made us laugh all the way (well most of the way). From the moment she came into the world a healthy baby and wild chubby toddler she challenged and fulfilled us. We remember joyfully our confident, funny and adventurous little girl before she started to get sick. Just before we celebrated Mia’s 4th birthday doctors confirmed our worst fear, every parents worst fear. “We are talking about years not decades, Mia probably wont make it to highschool” he said “there is no cure or treatment for Batten disease.”
Tucked up on the couch together away from hospitals and the chaos of Mia’s diagnosis 3 years earlier our faces beam and our hearts soar as we imagine the beautiful, determined person Mia was supposed to grow into. Not the child my husband holds in his arms now, Mia relies on us to care for her, she is completely dependent on us every day all day and night. She cannot talk, see, or eat or move anymore and the rare neurological disease takes a little more of our daughter each day.
She should be bossing her little brother around, back chatting me and screaming around the house dancing, dressing up, learning to read and speeding around on her bike and handing us hundreds of drawings and craft projects.
We have spent the evening laughing together despite our heartache, playing draughts and dancing with Toby and holding Mia in our arms and declared it the best Saturday we’ve ever had. Mia’s presence is precious, almost sacred,her vulnerability a powerful strength and her ability to communicate love with out words is unique to me. Being with Mia is positive in ways I don’t even consciously comprehend. She is able to diminish all the trivial and irrelevant so we can focus on what matters.
Mia has taught me how to be more loving, patient, accepting, daring, present, to be kinder especially to those more vulnerable.
I don’t have any wise words on how we will live with out our daughter one day whenever that time comes. I suppose we will try to remember how deeply we loved, how it felt to hold her and the privilege, joy and heartache of having such a beautiful daughter.
Images: Julie Adams
Peta Murchison lives on Sydney’s Northern Beaches with her husband Hamish, children Mia and Toby and adored labrador Bon Bon.
A mother dedicated to raising awareness for Batten Disease. Batten Disease is a rare degenerative genetic disease that affects otherwise healthy children who can sing, dance and bounce. From a young age affected kids start to lose their ability to walk, talk, see and smile. There is no cure for children affected and it will eventually take their lives. Awareness and research into this rare disease is imperative to find a cure. Peta’s eldest daughter Mia suffers from the condition.