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

Triumph & Trauma

I have just realised that we have all been so wrapped up in the beautiful moments this last week all our photos are of us sleeping.

I have just realised that we have all been so wrapped up in the beautiful moments this last week all our photos are of us sleeping.

I try to keep this blog about who Bede is and how he is doing rather than just boring everyone with the details or even, sometimes the despair, of what is happening. Sometimes though, I think the details are important at least for the purpose of letting our families know and certainly as a testament to Bede’s strength and the pride we feel for him.

In the last 3 weeks Bede has had

  • Severe pain
  • Respiratory issues
  • Needed oxygen on and off for the whole 3 weeks
  • Heart rate issues
  • High blood pressure
  • Constant Morphine and Ketamine infusions
  • A blood infection
  • 4 kinds of IV antibiotics
  • His permanent line come out
  • The lining of his small bowel breaking down
  • Vomiting and Diarrhea
  • Tumour growth
  • 5 blood transfusions due to the chemo depleting his blood cells.
  • CTs
  • The skin around his bottom breaking down and bleeding
  • Cannulas and collapsed veins from blood tests
  • The hardcore chemo
  • Surgery to insert his new permanent line, this time an infuser port
  • MRI under general anaesthetic
  • And has been weaned off a lot of drugs

In fact the majority of these things unfurled in the first 2 weeks following the new chemo. Each day has been a new challenge and each day we have tried our best as a family to meet it. Day by day. I think rambling off that list is important because it really demonstrates just how remarkable our little Bede is. Through it all Bede remains calmly and firmly himself. I marvel that through all this trauma he has not only managed to continue smiling and shining but he has also managed to grow so much. We are incredibly proud of him.

We had an MRI on Friday which, incredibly, showed the new chemo has stabilised his cancer. Quite a feat really considering the tumour was growing so aggressively, it MAY have even shrunk it marginally.

This week we managed to stretch his IV lines all the way to the big bed and we slept together. Just like old times. Wrapping each other up in our sweet love.

This week we managed to stretch his IV lines all the way to the big bed and we slept together. Just like old times. Wrapping each other up in our sweet love.

We have had some positively wonderful times with bede. Uplifting times. Beautiful affirming days.
One day in particular was incredible, we had an infant massage session, a music therapy session and a guided play session. He was so incredibly enlivened and engaged. He has definitely re earned his nickname smiley.

Bede has grown within his own mind so much.
 He has a favourite page of a touch and feel book and reaches out to stroke the animal. He plays kissing games and smiles asking for more.

He freely gives away his joy by smiling indiscriminately. He smiles at everyone now, those jewels are no longer just for his Mumma and that makes me beam. His smiles are beautiful and luminescent, they of course shine so bright. His smiles make everyone else smile and the Bede effect is clear.

He has even managed to fulfill the secret hope I had for before the next chemo started. He is back to laughing.

I think what has brought Roy and I the most joy has been watching Bede discover, develop and explore his sense of playfulness. That purely childlike quality that is in its essence so far removed from his cancer and all that that entails brings a happy balance to his awe inspiring substance. His gentle determinedness remains resolute. In addition to that determinedness he now pauses and basks in the moment, seemingly bathing in his own light. Strengthened by happiness and curiosity.

We have now started the second round of the hard core chemo. We haven’t been home in four weeks. We are hoping to get home for a couple of days this cycle. I think it would so much good for Bede, it would reenergise Roy and I and would do the world of good for Gus.

I know its been far too long between posts by the state of all my inboxes. This has been such an incredibly intense and equally triumphant and traumatic time it has been difficult to update. Each time I tried I was overwhelmed by where to begin. I worry that I no longer have the emotional wherewithal to do justice to Bede with my words but I will continue to try so long as you all continue to pray for him and care for him and are sending him light and love and positivity.

Thank you.

Sharing The Win

We have been here at the hospital for two weeks now.

ward

Today Bede had surgery. Last week Bede’s permanent line fell out so today it was replaced with an infuser port. He came through this surgery much better than his last.

coming out of surgery

He is continuing to slowly wake up from the drug induced fog. Perhaps a little slower than I anticipated in my last post but today is our best day yet. That is pretty incredible given he has just had surgery and all that he has been through over the last few weeks.

He is more awake and enjoying playing with his soft bunny.

As I write this Bede’s Dad is whispering to him how proud he is of him. The lights are dimmed. Soothing music is playing. The love that radiates from Bede fortifies us all. Through it all the soft and gentle beauty that is essentially Bede is unmoving. Who he is glimmers through the fog.

Hope for a better day swells within me and I am thankful for all your love. Be reassured that he is doing amazingly well.

How well he has come through this surgery definitely counts as a win.

Bede’s back!

smiles for bede copy jpeg

I have tried hard to write a blog explaining all that has happened but there is no point intellectualizing it. It’s been a very difficult week.

I am awash with exhausted relief. Glorious exhausted relief. Far too awash to do justice to the calm joy that wells deep within me. Most of all I am thankful. His soul is here with his Mumma, entwined for another day. His weight and light and beauty and substance mingle with every fibre of my being.

Let me tell you something about Bede, all superfluities aside he is just plain awe inspiring and incredible.

Bede is here. As has become typical his little body rose up to meet the challenges it was faced with. He some how determinedly and resolutely put one foot in front of the other and got on with the business of living, balancing grit with beauty and light. He was in the deepest pit, one that none of us could see a way out of and he has step by step climbed his way out.

He is tired, as we all are, but he is slowly rousing from the fog that the large amounts of narcotics visited upon him.  I have said it before Bede doesn’t simply bounce back as you so often hear some children do. He is consolidating his position and then slowly and purposefully moving forward.

looking up to mumma.

I’m not sure exactly how or even the exact moment we turned a corner but we did, he did. When we were still in the midst of the fog just after the pain had passed but when Bede was heavily sedated he chose his moments and then shone through. He opened his eyes and was engaged. He could not physically bring his lips to a smile but every other part of his face lit up as he looked up at his family. The little eyebrow that twitches before a grin was insuppressible and his eyes sparkled.

Now slowly, bit-by-bit he wakes. He is not a 100% yet but he is in there. Today when it was just Bede and I snuggled in together the smallest smile skipped across his face…. Bede’s back!

The last week has been overwhelming for a whole number of reasons aside from the acuity of Bede’s illness, most of them distractions, and we are all physically and emotionally exhausted.

All is not solved, we are where we were before this latest scare but that is still so much better than we were last Sunday. We are waiting to see how effective this chemo is to know how much time we are afforded. We are slowly weaning back the oxygen and pain killers. Bede lives to fight  and love and light another day.

Tonight I bathe in sweet relief. I am wrapped in his warmth. His love is all encompassing and more grounded than ever. I remain madly and deeply in love with Roy and lightened and uplifted by Gus’ joyfulness. I am so incredibly deeply thankful. We have faced our darkest moments and once again Bede lit the way.

I am so especially thankful to Bede’s primary doctor for the care and time she has given not only Bede but also Roy and I that helped us find our way through. She did more than treat him physically, she kept hope when ours erred. We are blessed to have her on Team Bede.

Most of all I am thankful to all of you. Make no mistake your love and prayers and care are real and tangible and helpful and solid and amazing. I truly believe they are carrying him through. The miracle Bede needs is all of you. We were there, teetering on the edge of the cliff and I believe you pulled us back.

This blog doesn’t sound as celebratory as it should be, my exhaustion pervades. Feel free to cheer, dance in the streets, grin ear to ear for me. Bede did it again.