Watching the front roll through.

We were readmitted yesterday.

Bede's first ambulance ride.

Bede’s first ambulance ride.

Bede’s little soul is agitated. Wearied but not yet worn. He has been working hard, He has spent the night and most of the day sleeping on my chest. I can feel his little chest rising and falling against my own. Breathing is hard work. Huff puff huff puff huff puff.

His plump, warm, soft hands resting on my throat feel like the greatest gift, His warmth blankets me. His determinedness fortifies me. His gentlenesss soothes me. His peace envelops me.

But that is all about me, this blog is not meant to be a testament to a mother’s love for her son. This blog bears witness to the most remarkable little human I have ever come across.

Bede is grounded. His light glows. Bede is tender and he is true. His strength is gentle but uncompromising.

I’m sure I have said it before but he reminds me of a ship. Forging forward, undeterred.

Waiting and watching the weather.

Waiting and watching.

In my last blog I likened chemo to sitting at the coast watching a front roll in. I grew up directly across the road from the open ocean. I would watch the clouds gather and know the storm and the gales are about to hit. The windows will rattle and the house will shake, you’ll lose power, the storm will batter you.

Now here we are in the thick of it. The storm has hit. Bede’s little body is being battered by a bacterial blood infection, he is septic. The doctor said today the kind of bacteria and infection he has is really as bad as it gets.  He is shaken but he is undeterred and so as his mum I’m really not scared. Bede has bunkered down and is enduring the front, like our old house he has a solid foundation, Team Bede. The collaboration of so much love, expertise, friendship, prayer, science, hope, faith, grit, with the most amazing leader and Bede really does lead the way.

We have caught the infection early. He is responding to the antibiotics.

I am in awe. I think one of the most remarkable attributes a person can have is the ability to just keep on keeping on. In the face of all adversity to put one foot in front of the other and battle on. My precious son completely embodies that ability and I am truly in awe of it.

Note: This entry was written last night. Bede is still a sick little baby but he is responding incredibly well to the antibiotics. Most of his blood counts are recovering very well and that includes his neutrophils which represent his immune system. Bede is not out of the woods yet but he’s finding his way.


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.


Oh Happy Day!

My cup is full. I am brimming with joy and happiness and thankfulness. A smile irrepressibly spreads from one corner of my mouth to the next. Life is grand and beautiful and saturated with colour and light.

Bede turned 6 months old on the 2nd and we celebrated. We celebrated with balloons and colours and cake and love.6 month cake

 6 months with mum 6 month with daddy

Time is a funny, elastic thing. If you asked me if I have had long with G who is 7 years I would say not at all, he is still a baby. But this week when I think of Bede I feel like 6 months is a long time. It feels like a miracle. I have truly loved and fully lived each of those days and fully immersed myself in the experience of Bede’s life. Being Bede’s mum has been all encompassing. I have held him for hours every day and made sure he has felt loved and nurtured and safe. My love for him is embossed on every cell of my being.

6 month old Bede isn’t too much different to the one month old Bede. He is calm, resolute, substantial, joyful, curious and happy. He shines. He seeps beauty and grace and oh so much light. even when he can not phsyically mould his mouth into a smile you can see the light and happiness pouring from his eyes. The main difference is now we know just how much he is capable of. He is capable of more than simply enduring. He is capable of growing and evolving through the most daunting and trying circumstances.

Bede has really taught me a lot about unconditional happiness. I mean it when I say there are times when he can not physically smile but he is happy. His happiness is not pre determined by his conditions, it is not ruled by externalities. He cultivates it from deep within. Like a kaleidoscope his happiness is the reflection of so many things , his family, his toys, a world to explore even if it can not be as vast as yours or mine, his curiosity, his disposition. At times I find myself walking down a corridor on the children’s cancer ward smiling and I feel what Bede feels, unconditional happiness that is not dependant on my environment or material things or anything and I know Bede has taught me a lot.

Bede was so sleepy but so happy to be in the fresh air, tasting ice cream and experiencing his parent's joy at having him outside

Bede was so sleepy but so happy to be in the fresh air, tasting ice cream and experiencing his parent’s joy at having him outside.

Other than Bede’s 6 month celebration there has been a lot of other bits of happiness floating around. Last weekend we got home for about 8 hours. The ward also had a BBQ and Bede wore a party hat. We broke all the rules and snuck some ice cream into his mouth.
He has started mouthing at things a lot and we are so excited to start feeding him food soon. I have never taken food granted and can not wait to share with Bede the adventure of taste, such an essential party of experiencing this world of ours.

Roy is obviously so proud of his little baby boy as he watches Bede commandeer his rusk. He seems excited and hopeful and happy and just really really proud.

The truth of course is there is always a balance. This post sounds boldly happy and things are but at the same time there are still moments, quiet moments, even sad moments. There is always a choice to be had. There are moments where you think that 6 months old means we’re already a quarter of the way through Bede’s life expectancy. We choose to focus on the moments where we just feel blessed to have had him this long.

At the moment he is bold and curious and an explorer. Most of all he is adored and rightly so. Well actually in this moment by the time this blog finally goes to air he will probably be asleep and we MAY have even got home! Fingers crossed. Love to you all.
6month sleep insta