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.

25 thoughts on “This is where all the cool kids hang out, sharing the love.

  1. My god Issy, you are an inspiring woman.
    I pray night and day for your sweet little boy. The Darch family is never far from my thoughts.
    It was such an honour to share Bede’s special day with you all, thank you.
    All my love
    Bec Carney

  2. Isabella, every time I read your blog I have no words. You are an inspiration, your writing takes me a journey. The highs & the lows, it’s like I’m there with you. Bede keep digging in your heels. Your never far from my thoughts, every night I say a little prayer for you and your family. All our love, Katie Ben & Alexander x

  3. Dear Issy, Roy, Gus and Bede – thinking of you all during this challenging time and praying for your miracle…you are an awe-inspiring, strong family. Xxx Leah and family

  4. Just simply praying for your gorgeous Bede, and hoping that he can pull through this. All our love, Anthony, Petra and Samko. Xx

  5. Wow you have to be fast to get a first comment in these days! Bede and the amount of people that carry his truth and strength with them is growing like a snowball rolling down a hill someone get ready to yell avalanche!
    ( hope this description makes sense as the closest I’ve gotten to snow is defrosting the freezer lol )

  6. Beautiful beautiful boy. Yet again you deal with the hand you have been dealt with more grace than any adults I know could muster. Your smile lights up the world. Things might get rough for a while little man, but your mum is leading an army to carry you through.
    Thinking of you baby boy, always thinking of you.
    Love Kellie and Eliana

  7. Sending warm hugs of strength and prayers of support to your family and to precious little Bede. There is little more I can say, except please always remember that even though we have never met, strangers are offering support and love and strength for you and your precious baby. This will also ensure that Bede has a place in this world and that his presence will always be honoured. xox

  8. Such a beautiful expression of love, courage and determination. Our prayers and healing surround you all, every minute of every day.

  9. Beautiful, iz. You should be so proud of yourself, Roy, Gus and of course your perfect boy Bede. Stay strong xoxoxoxoxoxoxoxoxoxoxoxoxo

  10. Issy darling,
    I think we can all learn from Bede’s determination and demeanor . He is alot like his Mum :).
    Thank you for sharing Bede’s baptism with us!
    Keep strong, keep up the fight Bede. I am praying day and night, because Bede, you really matter.
    Love and blessings Claudia xxx

    • Dear Issy Roy Gus and Bede, i have been unable to properly read yr update as all is blurry due to falling tears. U have so much support and love from everyone here and far away and we all wish we could wrap u all in a great big hug and make it all better. Beautiful Bede, u and yr family are always in out thoughts with nothing but loving caring positive prayers. U hav been so strong guys which is so inspiring. A truly beautiful family. All our love Tosca and family xoxo

  11. Oh Is,
    My heart is breaking. Be strong little man. You are amazing. Jarvis and i are cuddling and thinking of you, you marvellous little soul.

  12. Isabella . your sunshine Bede is someone from somewhere very special, that we all never been before, with something very special that we all never seen before .It is incredible, every time when I turn on my computer ,I look at his smile it’s like something magic happen .It is incredible how I feel it .I believe so much in god so I believe that he is holding Bede tight on his arm by protecting him from this cancer .and Bede is trying to tell you through his smile mom I am in good hands and with your magical love and power, we are going to kill this cancer because I belong to this world with my family . so keep your power on super mummy because you are the leader of this fight and Bede is following you. may god bless you .love from Neusa and family.

  13. Dear little family, someone referred me to your blog about precious Bede today. Reading your eloquent and loving posts Issy is a privilege. Sending you love, strength and prayers as Bede’s journey continues. KerryG *^_^*

    • beautiful bede you are in my thoughts and prayer continuously
      thinking of you isabella , roy and gus on what must have been another difficult day xx

  14. Another who doesn’t know you but who knows a friend of yours. Your story has touched me. Thank you for sharing your beautiful boy with us. Sending many prayers of peace and courage to Bede and your family. And many tender hugs to all of you.

  15. Bede you matter so much to so many. Your light will never go out as it shines in the hearts of family, friends and even strangers all over the world.

  16. We love you all very much! Our darling little grandson Bede, give it all you got little mate. Roy, Is and Gus, we don’t how you do it, the strength, the courage, but amazing springs to mind. Then we remember that superb smile and we do know how you do it! No one is giving up, fight the fight with all your might! So much love from every direction coming your way. Connie and Ross

  17. Watching you and Roy with Bede was breathtakingly beautiful! The love, strength and security you offer Bede is nothing short of amazing. Please don’t ever fear that Bede will fade into nothingness… he might be small yet he has so much character, happiness and love to share with us all, and everyone that hears about Bede will never forget about him!! He’s in my thoughts and prayers, every day. Lots of love being sent your way xxxxx

  18. Issy. We are praying for your beautiful little man Bede who is fighting with such courage. You are in our thoughts all the time & know that your strength has touched so many people! I wish we could have been there to share in the celebration on Saturday! The prayers will continue!
    xx Tanya, Jeff, Ryan & Bridie Cheema

  19. Believe in miracles …. sometimes they do come true! Praying for you all and sending you strength. So pleased you had time away with your boys 🙂

If you leave a comment for us or Bede we'll make sure to read it! Thanks for following Bede, we appreciate each and every one of you.

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s