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.
A very beautiful glimpse into your special daughter and her relationship with Bede. Thanks for sharing.
Beautiful! Forever in our hearts. Team Bede.
What a beautiful bond they have forever xx
Love, always wins xox
Shine on baby boy ⭐️
Dear Isabella, Roy, Gus and Cress thank you so much for your beautiful blog. I was only talking about Bede today to my sister and then your email came through. The love of a sibling is like no other. Gus, Cress and Bede would have taught and learnt so much from each either – unconditional love, empathy, the joy of laughter and the indescribable pain of grief. Having lost our son Henry at age 6 nearly four years ago I have witnessed those same emotions and experiences from his siblings Gretel and Billy. Having Henry in their world has helped shaped the exceptional people they are today as Bede has to Gus & Cress. I hope you are all doing ok.
I have never met you but feel I know a little bit about you as you allowed us in on your journey. I will be in Perth in 2 weeks and if by chance the planets align would love to meet you to say hello and share a hug.
Sending you love and strength. Jess Holmes x
Tears, just beautiful Isabella. I’m sure she will remember him and everyone who loved him will help her to when it’s not easy. Much love to you all always. What a special soul she is xxx
This is so beautiful and brought me to tears.
Dearest Isabella, Roy, Gus and Cress. Such touching and inspiring words. Bede is forever in our hearts, never having the privilege to meet, but feeling that through your words, I know him, have cuddled him, have felt his warmth in the room and heard his laughter. I wish you all the strength to guide you through the difficult days and all the love and happiness to continue on your new normal. He May Be Small, But He Was Mighty xxx
Thank you so much for sharing your beautiful real life moments. It’s allowed me this morning to reflect what my girls had and have and not to be numb.
My heart feels heavy for your family but in some weird way a sense of calm.
I absolutely loved reading every moment your princess and Bede shared and still are sharing.
Lots of love to you all. Xxxxxxx
To much to say about what Bede, your family and you, Isabella, as a mother, have taught me. To much to say about the grief, your loss, your love, his life. Bede is still daily in my thoughts. Nevertheless, despite his absence, your family is still whole. 4+1. Forever.
Beautiful words .. A wonderful bond between a brother and sister ❤️ Will be there forever ..xx
I wish you all 4+1 a joyful and peaceful year 2018. May life be sweet to your family. Bede will never be forgotten.
Alex from France.