We have done it, we have won, life is good. The sun is shining, his sly, cheeky grin fills our hearts and his steadfast love permeates every corner of our family. Our beautiful Bede has once again risen to the challenge and defined his own course.

No longer a fragile or struggling little boy that we need to stay hushed for –  Bede has thrived and is embracing life.  Bede loves being surrounded by different people, different sounds, smells, textures.  He is making new friends and trying new things. He is gaining brand new skills, the skills they called impossible. Thanks to his persistence and our dedicated team’s hard work he is now able to sit up completely unassisted! (yes! you read that right! He is so casual about it.)  He went to a performance of The Very Hungry Caterpillar recently and sat up the front with all the other kids and got his face painted for the first time.

Bede’s babbling voice with gentle, happy, inquisitive tone and intonation fill the air as he practises words and clumsily manages a few. His contentedness soothes any doubt I ever had.

Bede loves going to the dog park in the afternoon and seeing all his old and new canine friends as they bound over to his wheel chair and nuzzle him or the eager ones that slobber him in kisses to their owner’s dismay. He loves attending kindy and being cared for by the staff who engage with him with such skill and genuine care it has blown us away. He loves swimming lessons and his music therapy and protests his devoted and beloved physio louder than ever!

He is attending rehab and has been practising his sign language and has started learning to walk on the treadmill as we all sing “hoorah!”

A workout this hard is serious business.

He loves pressing his switches with recorded messages or calling out to us with his laughter to remind us all he is at the centre of our world.

Bede sits on the water’s edge at sunset, a total beach baby like the rest of his family, and lets the waves wash over him. The cool sensory tug of the waves comes and goes threatening to topple him over but Bede remains strong, determined and lapps up every bit of happiness that is washed his way. Bede’s always been good at going with the flow. That hasn’t changed.

It’s been a year since I dared write the words that so many of my friends who have lived alongside brain cancer have thought but dared not say. A year that left me wrapping Bede and his siblings in a loving cloak of protection. Unable to share as I focussed on him and making it all better. A year that has left me timid and with no time to write but Bede was born to shine and I am privileged enough to be his voice. It’s been a year of hard, constant, vigilant work. Both exhausting and energising it’s been an absolute labour of love that we could not have done without our incredible support crew of carers, therapists, educators, family and friends. The good bits outweigh the bad. In that time as I dealt with whatever was in front of me I have also felt so overwhelmed by all the support we received from our local and the wider Australian communities. We have been able to give Bede support we never imagined. What thanks could ever be big enough? You joined us in changing Bede’s experience of his life. My mum said the thanks would come from Bede. Perhaps the best thanks is a life well lived and he is here enjoying trying salted caramel for the first time and pulling his little sister in for a hug.

Salted caramel and sunset celebrations.

Life slowly returns to the hum of normal Roy returns to work, I return to study, Gus takes surf lessons and Cress is in daycare. Each day I am thankful for the ordinary and extraordinary and I love Bede even more.

One of the boys.

When you try and tolerate your sister for your mum’s sake but she won’t stop therapy-ing you!

Face timing with Dad

Bede, it’s been a year since I felt life was too hard for you. I was wrong.  I should have known.
You are remarkable. Thank you for holding the faith when my own faltered.
Thank you for reminding me as you so often do that magic exists.
You are bigger than the ugliness of brain cancer and and as small as a tender kiss and whispered sigh.
The most complex life defined by the simplest love and purest happiness.
You are sitting on the beach with me. Right now. Perfect just as you are.
Our triumphant king of the point.
For this moment and everyone that has gone before and lies ahead.
Thank you.

Then the doctor walked in… that friendly face we know too well. “I’ve looked at the scan”.