As magnificent as ever.

NEEDING LOVE POSITIVITY AND PRAYERS FOR BEDE.

I had planned to put an update up yesterday explaining to you all about the new chemo and how it works. Nothing ever goes quite to plan.

I said in my last post that Bede was becoming tired. Since then his pain has gradually been increasing and we’ve been increasing the measures to deal with that pain. It has been difficult trying to manage that pain at home. Once we got to the hospital and started the new chemo it continued to intensify. We eventually saw the anaesthetist who put him on continuous morphine yesterday evening.

Our first trip to the hospital with concerns for his pain was the day after his baptism. They did a CT then. We did another CT last night. In the 5 days between the two scans the tumour has gown a centimetre in a couple of different directions. That might not sound like much but that’s massive growth in only 5 days. It is causing him all this pain.

When we were discussing this new chemo with the doctors they spoke about another little girl they had treated previously. she had a similar affliction and although she spent a lions share of a year at the hospital she then got 12 months at home, chemo free, enjoying her life and her family before she died. The concern I expressed to the doctors then was that I sensed Bede’s death was much closer than anyone realised.
The way this tumour has grown has reinforced that feeling within me.

I am devastated not because I feel Bede’s death may be close, although of course that saddens us all, but because we have had this 24 hrs of pain.

His little soul is worn. He is scattered. I think it was in the very first text I sent out letting you, our most loved people, know the diagnosis that I said one way or another we would carry him through this. So this is what that feels like.

I used to secretly dislike it when people said he was a fighter. Although I liked that people were backing him, no precious soul this young should have to know the harshness of fight. His only job should be to enjoy the world. But tonight I see him fight. Knuckle down, one foot in front of the other, fight. It’s not a fair fight but as usual he takes it on with courage and a purposeful grace.

Life hurts. If I move he cries.

He is fighting. It is hard work but under that remains Bede. His beautiful soul still here. Steadfast in its warmth and beauty. Uncompromising in the face of pain and discomfort his essence wraps us up.

On his chest is his monkey from his Uncle Vin and Aunty Maree. It plays let it be. He is snuggled into my breast and the pain in his neck is relieved and supported by the crook of my arm. He is uncompromisingly Bede. He is beautiful. He is grounded. He has weight and soul and light. He is not freely smiling but he glows. His gentle, peaceful strength remains, resolute. His light lifts us up. He is my son. My kiddo. My love.

I am praying this chemo works. Not because I’m greedy and am grabbing for time that isn’t mine. I’ve already been blessed beyond belief just to meet Bede let alone the privilege of mothering him. I am praying the chemo works because I would like a different death for him. I would like to afford him some of the peace and light he has so generously given to the world.

I have thought a lot about this post over the last couple of hours. With so many people reading now I don’t want his light replaced with sadness in anyone’s minds. I have to have faith that even times of darkness his light shines so bright, too brightly to be replaced and more importantly I have to honour Bede’s truth and his life experience and this is it. He is not in a good place. He whimpers.

Although this moment in time is difficult his light shines on adamantly.

As his mum I come to you as always with fierce determinedness, but also a new desperation, to give him the best life and death I can. I owe him so much.
I truly believe that all the love and prayers and positivity he has received from you have wrapped him up and carried him, unbruised, through this whole experience. I humbly ask you now please send him some more. he needs it. Hoping for his best outcome.

So as a dear friend and my soul sister so eloquently put it
Whether you believe in faith, science or humanity please send some love, prayers and positivity Bede’s way. I promise you he is magnificent and beyond worth it.

This is where all the cool kids hang out, sharing the love.

WOW! What an incredible few days.
My greatest fear, that our stoic, warm, solid, peaceful, smiling Bede would all too easily fade into nothingness, is slowly, person by person, facebook share by facebook share, being alleviated.

The blog has taken off. Everyone from Joel Madden to Kevin Rudd, Liverpool player Brad Jones to Chrissie Swan and so many more have tweeted support for Bede and I’m not even on twitter. All our facebook friends, the people in our atmosphere, have been reading about Bede. I can’t adequately express my deep thankfulness. It is such a gift you all give me as a mother to know my son was here, you noticed, he matters and that despite his short life he is getting his opportunity to make his mark on this old world.

We had Bede baptized on Saturday and as I walked around the corner to the church I was overwhelmed by all the people standing out the front ready to offer Bede and our family, their love and support.  Such a joyous milestone, marked with a front lawn party, gifts, good friends, champagne, kids running around, just a total celebration of Bede and his joy.
baptism church baptism church candles

The days have also been marred with some difficulties. Bede is momentarily, worn and wearied. For the first time in his life he cries with discontentment. He’s had a rough couple of days, with the new tumours have come more pain and so we have been working hard at  getting his pain management plan right. I think we are getting on top of it now.

Bede in my arms blog

Today we decided to up his treatment to the hard core chemo. It’s a difficult decision. For a while most of our time will be spent at the hospital which will be difficult for Bede and for Gus. We were at the stage where the doctors would have allowed us to just make him comfortable if we had pushed for that. But for now he is full of life and vigor and a grounded determinedness. He’s still smiling.

At the beginning of all this we promised ourselves and our families and Bede that we would fight like no one has ever fought before. We also said that when the time came we were the right people to honour his truth, his life experience and fill his life with sweetness, comfort and light just as he has filled ours. We’re not there yet and the doctors agree. He surely is tired though.

In the hospital for a short visit on Sunday, I watched as his limbs just melted exhaustedly into Roy’s arms. He took a moment, searching within himself for the energy and started producing glorious smiles. His light shining relentlessly, determinedly, refusing to be obscured.

There is an exhausted joy. A lopsided happiness. Until now Bede has just simply continued on despite his illness. I really see for the first time this illness taking its toll on Bede’s soul. I also see, Bede digging in his heels and fighting. Refusing to be robbed of his gentle peace. Its not an angry fight or battle but a peaceful protest. He is shaken but he is undeterred. He is calm and beautiful and warm and his light glows and lights up all those around him. He is powerful and gentle. He is peaceful and strong.
In this, some of his most difficult moments yet he is showing his metal and I am in awe of his strength and his grace.