It has been a while since I posted. I know this for a fact because I have been receiving messages all day telling me so.
Bede is strong, vocal, funny and shining bright. He is careful, he is an explorer, he is teething and his soul is as magical as ever.
When he speaks people listen and his eyes command your attention.
I’m hoping to write a proper update for you tonight but for now this is Flash back Friday for all of our new followers these are the links to some past posts that show some of where we have been. …
Don’t forget to check the ‘A Baby of Substance’ and ‘About’ links at the top of the page and please don’t forget to follow the blog.
Your love and prayers and support continue to humble and strengthen us.
I spoke at a fundraising event for Bede and our family last night. The whole event and the lead up to it have felt like a warm embrace filled with friendship and love for our family. I have attached a copy of my words for those of you who I know had been hoping to make it but in the end could not. It was a wonderful night.
Hi everyone. Thank you for being here tonight and thank you for listening to what I have to say.
I’ll give you a really quick bit of background, because as some of you know I fear the details of our journey are boring I also know some of you are here learning about Bede for the first time tonight.
About 5 weeks after Bede was born, 5 exhaustedly joyful weeks I knew something was wrong. It took 2 hospitals and another 11 weeks of relentless advocating to get the scans that finally brought us a diagnosis. Bede had an advanced brain tumour and it was certainly cancerous because it had spread throughout his brain stem and spine. His kind of cancer is rare and fatal. We get given different numbers depending on which doctor we speak to some say there are only 6 reported cases of this in the world. Some will just say it is very rare. After the biopsy and the pathology returned we pushed for a life expectancy. The doctors were reluctant to give us one because they don’t have a crystal ball but eventually, they told us, Bede had 2 years. One of intense chemo and hopefully one year of quality life at home with his family.
A lot of you who now our family know that we have tried to stay positive and happy through this experience. We don’t see much point in grieving while Bede is here. We will have a lifetime for Grief once he is gone. For now we make the choice to delight in every moment.
I want to be real tonight. I want you to know why your support means so much to us and what it has helped us through I want to take this opportunity tonight to catch you up, to tell y ou about some of the realities that I don’t blog about and hopefully help you understand why we’ve been so absent and not as present in our gratitude to you all as we would have liked.
I chose the photos that you have seen in the slideshow tonight. They are extremely illustrative of Bede’s journey. They are not the professional photos, they’re not all beautiful but they are true. I suppose the only photos that are missing are the graphic and slightly upsetting ones that show just how skinny and ill bede became before his diagnosis.
I’d like to tell you about some of the photos you did see.
There is the photo of Bede outside.
I fought hard for that moment. He had had a long admission and was about to head into brain surgery less than 24 hours after diagnosis. If he was going to die the mother in me wanted him to have fresh air in his lungs and to have felt the sunshine on his face.
There were so many ‘last’ photos. The moments we were told this is very likely it. You may be losing him now in this moment. Desperate to document his last moments we would snap away. Crying, holding him and willing our love to comfort him.
The photos of Bede and Gus when we had to decide with our doctor do we let him go for his play date or call him in to see his dying brother one last time.
You saw the moment that my acceptance of Bede’s fate and my deep faith that whatever was best for Bede is what would eventuate crumble as I begged for just one more moment, I wasn’t ready to never again feel that the coolness of his soft cheeks, the weight of his body on mine or the beauty of our souls entwined. Just one more moment I begged. I’m not ready yet, I’m not ready.
I chose this photo to have (on the screen) behind me tonight because while it doesn’t necessarily accurately reflect Bede’s external beauty it does speak volumes about my son.
Days earlier we thought the cancer was claiming him. He was on ICU level IV morphine not normally administered on the ward and at double doses. He was on IV ketamine and one on one nursing. He had spent days screaming in pain as the cancer grew. You might be able to see at the bottom of this picture the oxygen he was needing to stay alive, he was on high doses of steroids as he is now. The steroids left his face so swollen expressions were difficult.
This is him smiling in spite of it all.
Getting ready to make his come back.
This is typical Bede. This is my son.
You also saw intimate kisses goodbye as we stood on the precipice yet again of our greatest fear, moments of sheer despair. But it is in those moments where we need to make a choice. To surrender to despair and horror and brutal grief or to embrace positivity and to make sure as many moments as possible of Bede’s life are filled with love and joy and songs like incy wincy spider.
The support so many of you have given us from high school friends sincerely reaching out through facebook, to school mums cooking us dinner and keeping us nourished, to the friends who have stayed in contact and kept up traditions like the occasional Sunday afternoon drink and the people who have continued to treat us just the same as they always did. Your support in a real and tangible way has helped us choose incy wincy spider and playing and love.
So many of you tell us we are inspirational, and a lot of you know that doesn’t sit comfortably with me at all. It is your support that has enabled our strength and our positivity. It is your love and prayers and the practical ways so many of you have reached out that has fortified us and allowed us to be the best parents we can possibly be to Bede.
Of course in the photos tonight you also saw the smiles.
The unadulterated joy. The victories. The inherent strength. The moments that have doubled the size of our hearts. The moments we got to have him at home in his context with his family and his community. His first solid feed. His first get away down south. The photos mark his growth and his resilient spirit. A spirit that fortifies us for the fight. You saw his light, his grin and his enduring ability to bring beauty and joy to all those around him. I hope you also saw a happy and grateful family. Bede is strength.
I want to take a moment to talk about Bede. Sometimes I get nervous that if I repeat the same thing too many times I dilute the message but my dear friend Carolyn, reminded me that people like to be reminded of just how incredible Bede is so here goes.
Bede is determined, he is strong, he is solid and he is true. In the words of his medical team he is persistant. They say kids bounce back well Bede doesn’t. For all the deep pits we have been in he has never bounced. Instead he takes a moment, he gathers himself, he consolidates his postion and then purposefully moves forward. Putting one foot in front of the other he gets on with the business of life. There are no spectacles, no grand moments he quietly and unassumingly dominates cancer. He is often called a fighter but it is not an angry fight it’s more like a peaceful protest. This illness that looms large may have the power to steal his life but it sure as hell will never steal his light. He faces brain cancer head on and he does it with a grace I could never have imagined.
His indelible truth remains, his light shines bright. I know I say that often but it feels like such an apt way to describe Bede. Sometimes he softly and defiantly glows, sometimes he all out shines but he always has this beautiful happy light about him. He radiates love and warmth and something great but indescribable. He is profound.
He is tough as nails and soft as a feather.
He is courageous and triumphant, gentle and soft and his little warm hands that he tip toes across my own feel like the worlds largest blessing.
Right now in this moment he is triumphant. He is doing better than anyone could have ever expected. He is eating solids, sitting up, babbling smiling. He plays, he takes turns, he is careful. He is an explorer. Where before Bede’s old soul was so prominent and overwhelming now his gentle persistent personality shines through and I really like the person I see.
In regards to that life expectancy we’re now told all bets are off. The truth remains that Bede could die suddenly and painlessly at any moment and while the cancer will most certainly eventually take him no one is prepared to give it a time frame. No one is prepared to underestimate Bede and his will. He is doing better than any other child that has presented with this cancer. For example while all the other babies presented at 4 months already completely blind we found out yesterday that Bede retains at least some sight.
I want to say thank you so much for your love and prayers. There have been so many times things could have gone so much worse than they did. Before the biopsy the doctors gave us weeks. So many prayed with us, sent love to Bede or just concentrated your positive energies on him. You gave him whatever you had and I earnestly believe the miracle Bede has had and the he still needs is all of you.
I’d so love for everyone here tonight to head over to the blog and at the bottom of the page in a grey box is the word follow. Click on it and subscribe and the next time we need a miracle we can call on you as part of team Bede. We so desperately want for him to be known and to be afforded his opportunity to make his mark on the world.
I really want to thank my beautiful friends who have helped organize tonight. I found the kindness difficult to accept initially but it has felt like one huge hug for our whole family. I also want to thank everyone who supported us and them by contributing to tonight and I know there are many of you.
I want to thank all of you for helping alleviate my fear that my incredible son would go unknown to the world.
I want to thank our whole school community for your support and love and prayers and I especially want to thank the year 2 mums for the meals, the fuel vouchers and for at times literally putting clothes on my back.
I want to thank everyone for coming tonight, for your support and love and for letting me tell you all the other side of the story. That might not sound as positive and as happy but is true and real.
I assure you the brutality of the journey doesn’t diminish they joy of parenting Bede. Everyday we feel a deep happiness and privilege to be the parents of two such amazing boys and a deep gratitude for all of you.
Please please please check out the blog.
Bede, maybe small but he is mighty. Thank you.