Being a parent has never been easy. But in the current information age, where there's a reason for everything and always a better way to do something, it's often easy to get hung up on stuff that doesn't matter. We're taking a breath and remembering to focus on the important stuff.
You may have read about nine year-old Mia Murchison and her battle with Batten Disease, a rare degenerative neurological disorder that severely affects memory, mobility, speech and vision. It was with great sadness that the HoneyKids team learned of Mia’s passing on 17th August, 2018. We would like to extend our deepest sympathy to Mia’s parents, Peta and Hamish, to her brothers, Toby and Jasper, to Mia’s extended family and to everyone who had the privilege of knowing Mia.
In 2016 Mia’s mum Peta, gave a stirring TedX talk, where she spoke of learning about the terminal nature of Mia’s illness. She talks about being faced with your worst fear: being told that your child has no future.
“When my daughter dies, I will wash her and dress her. I will put flowers in her hair. We will play music, light candles and hold her. Our family and friends will come to say their goodbyes.
I’ve just given you a tiny glimpse into the weird universe you find yourself living in when you’re a parent with a dying child. The crazy things you have to contemplate when you’re facing your worst fear every day.
I’ve been forced to think about this, but I also have an ability to be able to see hope, when life feels pretty hopeless. Living in grief means life is more illuminating. It makes me recognise the goodness in people and appreciate the privileges I do have. The power of joy, love and kindness gives me a sense of hope.”
What a powerful message. It’s one that we’re listening to with a renewed sense of importance, in light of Mia’s passing. As parents with busy, full lives it’s so easy to get caught up with things that don’t matter. Petty arguments, the kids’ activity schedule, a driver cutting you off. The list goes on.
In honour of Peta and Hamish, and all parents who have lost a child, today we’re letting go of everything but right now. We’re living in the present, appreciating the joy our children bring and being kind to other humans. Start a conversation with the mum sitting alone at the park, smile at the dad wrangling the tantruming toddler at the supermarket, offer to help the helper loading a pram and groceries onto the bus. However small the act, it may be just what is needed.
Get the kids to tell you the best thing that happened to them today (and tell them that they were the best thing that happened to you today). Dance to your favourite songs together, instead of letting them watch TV. Keep them up late and go for ice cream when it’s dark. Look at the moon together. Give them lots of hugs, even if they don’t know they want them.
In Peta’s TedX talk, she spoke of the important role that family and friends played in their ability to cope with the devastating news that your child has a terminal illness. It reminds us to be generous with our time and with our thoughts, not just in cases like Mia’s, but even when kids are temporarily sick, or mums are struggling with their mental load or dads are travelling a lot.
Offer to help fellow mums where you can, tell them that you’re thinking of them and that they’re doing an amazing job. Drop around a dinner. Get your husband to ask their husband out for a beer so that he has someone to talk to. Take a friend’s child for an afternoon so they can have one-on-one time with their other child, or get some jobs done. Help with the school run. Compliment a stranger on her nice haircut. Be present.
“The present moment is the only place where I want to be right now. I’ve been forced to live here, and letting go of tomorrow, next week, next month allows me to focus on what really matters, right now. Life is more vivid, more beautiful, more profound and meaningful. And of course, unspeakably sad.”
Throughout Mia’s nine years, she inspired everyone she met to live a better life. She had a powerful ability to connect with people, despite being unable to see or talk. She’s given an immeasurable gift to those around her – to find joy in the everyday things we take for granted and to see the beauty in humanity.
A GoFundMe page has been set up to provide funds to the charities that helped Mia on her journey, in lieu of gifts.
If you or someone you know has lost a child, you can contact Child Bereavement Support (Singapore) for support and information on counselling services.
Top image: bounce4batten via Instagram
Like this story? Here’s more we think you’ll enjoy:
Bounce4Batten: Inspiring mum Peta Murchison raises awareness of Batten Disease for her daughter Mia
Early intervention preschools in Singapore
Counselling services for children and families in Singapore
Books that teach diversity and acceptance
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