A BLOG FOR BESS
I wonder if you will remember?
How you brought frenetic joy and energy into every room you entered. How the room vibrates with anticipation when you enter it. How you mirror light and shimmer it around like a crystal hanging in the window.
How you watched a cartoon based on your favourite song to sing with Bede, ‘We’re Going on a Bear Hunt’. The characters sung ‘my heart is still beating and I’m still thinking of you’ as they longed for one another unable to overcome separation. Finally feeling safe enough to stop being brave, you begin to cry a guttural, uncontrollable, grief riddled cry. I wonder if you will remember how real your grief is. That it is not a manufactured memory it is a grief borne from a profound and humble love.
I know you will remember to keep looking upward and joyfully yelling out to the sky and your brother “Thank you Bede”, “I love you Bede”, “would you like this Bede? You would.”
I hope you will you remember that you gave him a new brand of normal.
Unquestioning, unrelenting, unerring. His fierce, uncompromising, sister. Never allowing for his disability, but always protecting any vulnerability. There were never any excuses with you. You raised him up.
If he had the book. You wanted it. He was generous but you taught him to share.
If he wanted a quiet moment you wanted to invade it and be right there with him. He was kind and determined but you taught him tolerance.
If he was learning you wanted to conquer. He was determined but you made him keep pace.
He was our cherished baby but in your love he became the best kind of big brother.
I hope you will remember the ‘small’ stuff. Like the walks to the park, the shared stories, the drives to kindy, the playing on the mat. The evenings spent at the beach watching the sunset, the spas floating together, the long drives with the two of you side by side – you asking to hold his hand, indignant at his refusal. Laughing, exploring, loving, living. In every way each other’s equal.
I know you will remember the stories. Like how at 2 you couldn’t sort your colours but you could administer a subcutaneous infusion or a dose of heavy sedation no problems. How a hospital bed wasn’t a border for you. It was a seat, to sit with your beloved.
Before you were born you would kick him while he was fighting for his life, he would snuggle into the kick. When he died you would still crawl into his cot and stroke his face as you said goodbye, leaning into him. From life to death uncompromising love, his sister in his space. Right by his side. Unmoving. A mirror to his light reflecting it right back to him.
You won’t remember walking into his room the morning after he died – “Bede diff-ent. Bede white.”
You won’t remember that when someone cried you would take their hand and walk them into see him so they could stroke his cool face and be reminded that although Bede was “diff-ent” he was still Bede and so he was OK.
Those details that conjure the trauma, the grief, are irrelevant in a way. Eclipsed by the love that drove them.
May you always remember the love that allowed you to care for his body when his soul was gone. The love that allowed you to accept your brother just as he was even in the most challenging of circumstances. The same love that drove your friendship.
You will hear the stories of what a fierce, funny little thing you were forcing him to keep up with his therapy to keep up with you. But will you remember your tenderness, your gentleness if he was unwell, your care?
Will you remember the intangibles?
That you were a core part of his everything.
That Bede was never as normal as when he was with you.
Will you remember that your love and companionship raised him up enabling him to do the impossible
How much you adored him and admired him?
Will you remember that along with G you were his world?
Will you remember the chats, the reaches for a cuddle, the quizzical looks. The fed up sighs, the delighted squeals, the Christmas mornings.
I know you won’t remember the first time you met. Him supposedly not understanding the magnitude of the moment, you a day old supposedly knowing not a lot. Both of you reaching out across the bed to hold one another’s hands.
I hope you will remember how true it all was. That in 2 years the two of you packed in enough bonding, enough love, enough hope, enough tears, enough joy, enough light to last you both a lifetime.
This is not a memory we have created or reinforced for you.
The two of you were brother and sister.
With Gus by your side the three of you were everything. Gus enabled him, he shone and you my joyous little fairy taught him how to dance in the light.
In the end it doesn’t matter if you remember.
In your formative years you were exposed to magic. That won’t leave. That is imprinted on each fibre of your being. Your unique brand of defiant, nurturing, funny, joyful magic intermingles with his persistent, fortifying, hopeful, funny, light filled magic and it meets Gussy’s pragmatic, funny, clever, nurturing, magic.
And death can’t separate that.
And time can’t diminish that.
And forgotten moments don’t erode that.
I have no doubt you will forever be your own spectacular person. You will also forever be his sister.
This feeling that wakes you in the middle of the night crying for him. This feeling that he is being torn from us cell by cell. This feeling is the hard edge of love.
May all the softness of all the easy love he has shrouded you in comfort you and carry you and hold you. May his light shine the truth upon you. You were loved and you loved and you belonged to each other and you belonged together.
I’m sorry that you’re not.
I’ll meet you where we are whole and easy and glow.
“For whatever we lose like a you or a me, it is always ourselves we find by the sea.”
A Bede update will come – a response to your love.
Tonight is Cressida’s. Just as Gus has his own reminder for all the he is and has been.