But it’s been too difficult to write.
Following so much joy and hope and just spectacular everyday-ness Bede’s last MRI wasn’t great.
We had been talking about Bede walking, about him going to school one day.
Our doctor walked into our rehab session.
“You’re not smiling”
“No I’m not”
“Is it because you’re just not smiling or because you have our results?”
“I’m sorry guys, we need to talk about the results.”
I clutch Bede to my chest.
How dare cancer do this to us now.
Not with his progress.
Not when he finally visits the park, participates in family dinner, explores.
Not when he is learning to live.
I desperately want to put brain cancer on hold.
This is what the moment you know you’re about to be told your child is dying looks like. You’d think I’d be an expert by now but I’m not.
This is what disconnected soul trauma looks like. A sunny friendly room, with two happy babies, a loving husband, and a man who is far too kind tasked with breaking my heart.
I slump onto Bede’s therapy mat frozen. Looking between my tiny newborn daughter and Bede. Talking to B, reassuring him even though he is oblivious.
I can’t bring myself to get up. I don’t want to. I know they’re waiting for me.
“Come on Is”.
But I cannot cross that threshold. I don’t want to go back into a world where even the golden moments are all about losing Bede. I know when I stand up I lose him all over again. I know what that is now and today I can’t bear the grief. I don’t want to cross that threshold. But here we are and mothering Bede as he deserves demands that I do. So I rise and I brace and I refuse to cry because there are questions be asked.
The answers are brutal. The tumour shows significant growth although we can’t know for sure how quickly it will take Bede its estimated he only has 6-8 months.
My worst fear that Bede has hung around just long enough to meet his sister seems to have arrived.
At night Cress wakes me up to breast feed but I cant get back to sleep. Instead I lay there wondering how I will mother Bede in death. I know we have always wanted to keep him at home and I wonder if and how that will be possible. How I will honour him.
I am hormonal, exhausted, lost and broken when a dear friend, in a comparable position, reminds me of my own words. Words I had given her years a go. “At the end of the day we are the lucky ones. Because we got them. We get them. No one else will ever know the privilege of mothering these boys.”
I remember all we have is today.
Roy and I focus. We regroup. We know we’ve been here before. Almost a year a go exactly. We once again book tickets to Sydney and we hold our breath….
Once again Sydney delivers a completely different perspective.
It lashes out exhausted hope.
Professor Sydney doesn’t think Bede is necessarily terminal. He doesn’t think we should rush the next MRI. He does think the tumour change that’s clearly visible on the MRI is within the realms of normal fluctuations. He disagrees about its significance.
He reminds us to focus on therapy and rehabilitation and nutrition. He says we may just have a very long haul ahead of us and we need to focus on minimizing Bede’s long-term disability.
We try and reconcile this with the prognosis Dr Perth gave us. Two men who are leaders in their fields. We decide to live each day is it comes, order a bottle of champagne and wake up the next morning and take the kids to Taronga.
So here we are again living in the in between. Waiting with bated breath.
But there is no waiting for Bede… he barrels ahead embracing life and learning and his brother and sister.
So now the next MRI is tomorrow. We’re leaning towards no more treatment if the tumour has grown. That’s a scary thing to put in writing in the public domain. It feels like a decision that is almost too deeply personal to share but that’s what this blog has always been.
If we choose no more treatment for Bede it will be because our backs are to the wall. Because they are all too exceptionally horrendous due to the unique complications Bede would face. I spoke a long time a go about the fallacy of choice.
So let’s call this the elusive tumour update. Not my best piece of writing, not my best piece of life. It is what it is and it is the best I’ve got right now. I have a Bede update ready to go but I wanted to separate him from this. I think because who he is now seems so separate from this news.
I was at mothers group today and some beautiful catholic nuns help out looking after the babies to give the mums a chance to eat fruit toast and chocolate cake. I was talking to one of the sister’s about Bede’s scan tomorrow. She is a small gentle woman but with all the conviction in the world she said “Let’s pray and storm the heavens!” So if you have any prayers, love, light, hope, good vibrations, sunshine on a rainy day, wishes to send our way please do.
I just want our Bumble Bede, our brave little explorer, to be ok.
He may be small but he is mighty and more than ever he seems bigger than this.