Let’s bring Bede home.

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Bede has found his way to his joy again. We remain depleted but Bede has been reclaiming himself which has given us some sweet relief.

Bede needed surgery to explore the source of his internal bleeding, had multiple biopsies and had a special feeding tube inserted into his stomach which is something we’ve been planning on for a while. My understanding is that he is one of two children in the hospital, likely the state, that has this tube. The purpose of the tube insertion is to give him a better quality of life.

Bede was off pain killers in under18 hours and smiling the next day. Like a champion.

The bleeding stopped.

Then slowly the vomiting began. By three days ago it was the first time we had seen Bede in pain in a long long time. I was once again in the position of tearfully saying ‘there is something wrong with my child’ and having people hear that, believe that but have no answers.

Well we found our answers and Bede is heading back into surgery today to HOPEFULLY correct a complication from the last surgery.

bede blog

Bede has been reclaiming himself. Slowly the requirement for sedation was easing. He laughed more freely. He is tolerating being upright again. He plays. He is happy. Then a unsoothable surge of pain interrupts him. It is unlike the agitation of the last few months as soon as the pain passes he is back and wanting to play music.

I am writing this on my way into see him before the surgery. We’ve just been on the phone together and he is laughing big belly laughs in his daddy’s arms.

I am writing this in the hope that you will all get behind Bede today. Send him love, prayers and positivity. Every time I reach out to you all asking for love and prayers and good vibes he turns a corner. He is fighting the good fight with peace and love and this bubbling infectious happiness that is so filling. The melody to my soul. When people play with him they laugh or cry. His light is bright.

He deserves forΒ this to work. Let’s bring Bede home. Let’s carry him there on a wave of happiness.

Bede may be small but he is mighty.

Let’s bring Bede home.


25 thoughts on “Let’s bring Bede home.

  1. Bede sure is small but so so mighty! We are right there with you our beautiful grandson. Love, light, prayers and hope that this Surgery can bring you home little man, laughing and playing and shining your very own special light as you do. Love Nan and Pop D xx

  2. Darling Bede…Mighty Bede,

    The Clouds must surely part to allow the sun rays to filter through. My prayers are with you always.

    Bless you Little Man.

    Sent from my iPad


  3. Lots of prayers and white light for the mighty Bede…..and his loving family.


    T x

    Trudy Bostock from my IPad 🐘🐘🐘🐘🐘🐘🐘🐘🐘🐘🐘


  4. As always, this update provides such powerful insight into how wonderful Bede is and the strength that you have as a family. We’ve never met but I’m moved beyond words by these updates. I believe in the power of positive thoughts. Sending love, light and prayers for the surgery today x

  5. Sending lots of love and light your way Bede! You have come so far and there isn’t one person out there that doesn’t think you can do this. You are an amazingly strong and brave little boy. Best of luck for your surgery Bede xo

  6. Our thoughts are with you today. Go Bede, you can do it again young man. You are a winner we have your back. Big hugs and kisses, M xx

  7. Dear Isabella, Thank you for sharing your beautiful Bede’s journey with the wider community. We are all standing there with you. Sending you all Love, Light, Positive Thoughts and Strength to get Bede through this surgery and bring him home. Xxx

  8. Isabella, like many following your journey we have never met but through your posts I feel like I am part of your Team Bede, fighting alongside, cheering you all with the many wins and commiserating with the challenges you’ve faced. He is one mighty little man with an amazingly mighty family behind him. Sending many positives, love and light to you all today, especially mighty Bede. Hoping your next post is with you all at home.

  9. I thought of you all yesterday when I was in at the hospital for a check up with my little man. Hoping that all went well today & he has more reason to smile. Stay strong little guy xx

  10. You’ve got this Bede! I know you can do it, you will be back home before you know it! Isabella don’t know you or your family personally but I have been reading this blog for so long now, one thing I have learnt is how strong And determined little Bede is to keep on shining that beautiful light of his. Lots of light and love x

  11. Sending positive thoughts and prayers to you and your family Bede,hope the surgery goes well, and that you can come home soon, stay strong you are an amazing fighter, sending big hugs to you and your family, lots of love xxx

  12. Hi Isabella and Roy, my positive thoughts and prayers are still with you. You both are truly inspirational people. I can’t believe
    that Bede is 2! Please give Gus the biggest hug from me. Baby Eliza is receiving the Sacrament of Baptism this weekend. I will offer the Mass up for Bede. Lots of love Jade xxx

  13. Sending positivity to Bede. I was also thinking of Bede when my little guy had surgery the other day and hospital stay. Was nothing much but made me think of Bede and how strong you guys are for hospitals and the bigger stuff. Stay strong! x

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