Home sweet home.


There has been no acute change in Bede but more and more I have people ask how we are travelling as a family. So for our family and our dear friends here is the the ‘us’ update.

We have had an incredible week at home. We spent half of it doing nothing but recharging for fear of having to be readmitted early but as the week progressed so did our confidence and we crammed an incredible amount into three days. I have tried writing about the break so I could share with you our incredible relief and happiness at such a nourishing break but it just sounds like a boring recount. Suffice to say there was sunshine and garden time and one too many drinks with dear friends more than once, roasted marshmallows and card games by the fire, we let our hair down and enjoyed the company of beautiful people. we would have liked to see more of you but relished in spending time with friends we have barely seen since the diagnosis. I saw one family member in particular that always makes me feel more of myself, puts me in my context, enhances who I am and who always makes Roy laugh. anyway here is what it looked like. Home sweet home.


So happy to be home

So happy to be home

Bede and his dad. Happy to be chilling.

Bede and his dad. Happy to be chilling.

It has been so wonderful getting to regroup with G. He really is our centre. He makes our world make sense. He is this smart, funny, loving, articulate, cool little dude. We were sitting around the fire toasting marshmallows tonight and I asked him what he was thinking about. He looks at me and says ‘wisdom and love and faith mum’. His light is so different to his brother’s but they are most certainly brothers and they both have immense light and beauty. He is a joyful little soul and that warmth and happiness has always been revitalised by quality family time. I’m so glad to be reconnected to him.

I loved watching G sit with Bede in a quiet moment. Brothers but almost like passing ships. Their time together so different to most brothers time but so monumental. The love they have for one another is beautiful. I used to get scared that B would become unsettled if G held him. What a reality check I was in for. B stills himself in his brothers arms and seems to be so at home. I feel like that is one of the most profound connections B will make and I desperately hope for its longevity.

Roy is going well but is exhausted and has worked hard to allow me to relax a bit more in the latter part of this break. We are solid but touchy. This is life and its real and its hard and its honest and its wonderful to be sharing it with a man I have so much respect and admiration for.

I found myself crying today for the first time in a long time. In fact I have cried a lot today. It is such a hard thing to explain because it is not a sadness or a depression it is just emotion. There is so much emotion. Fear, anxiety, immense happiness, love, joy, gratitude, deep thankfulnesss, awe, confusion, more love, hope, acceptance, doubt and more happiness. It’s not overwhelming. It’s just a lot and today it all found its release in my tears.

This evening the tears have abated but I ache. I’m not sure if its because of or in spite of all the happiness we have been surrounded with over the last week. Tonight I ache so much for my little boy. I wish I could turn back time to when he felt different, when we were teammates, when he was still able to nuzzle at my breast, when he smiled more freely and supported himself more robustly. Roy reminds me that he has come off a hellish six weeks. That he is still regrouping. That his body is tired. That were all allowed a bad week here or there. For all Roy’s reminder is I am thankful Bede has two parents, one to hold the faith while the others’ faith errs. O I just ache for him. For Bede. I don’t want to lose him.

The MRI was booked in for earlier this week. For a couple of reasons this time it came with more risks for Bede so with that new information at the very last moment we decided not to go ahead with it.
It would have told us how much control we are gaining, how successful the treatment is. Now we head into this new round of treatment without the MRI and the information it would have given us but rather with blind faith, hope and prayers.

All in all Bede, the star of this show, is doing ok. He is quiet but he is not diminished. He is fragile bit at the same time strong and robust. His warmth wraps us up. His gentleness fortifies us for the fight. At the moment especially Bede has a magic about him that is fluid and alive and is really hard to articulate. He radiates love and warmth and something great but indescribable. Something that in this moment is beyond me. He is profound.

Look at those lashes!

Look at those lashes!

This post was initially written in bed a few nights ago. We are now firmly back at the hospital. We arrived yesterday. It’s interesting as roy and I have sat here chopping and changing what we wanted to delete considering what I am trying to achieve. A happy post or a sad post. Life these days is balance and contrast. Opposites sitting comfortably alongside one another. There is so much happiness and gratitude and thankfulness and joy and then around the corner is frustration or doubt or sadness. The sadness does not diminish the happiness but to say one without the other seems incomplete. All of it the whole beautiful mess is our truth and sometimes it’s hard to edit down your truth.

So this is how we are travelling and Bede is ok. We are all ok. Tonight is chemo night and as the vomiting starts it reminds of sitting at the coast watching a front roll in. There is a storm to come, looking forward to updating that we are all fairing it well.