A Bede Update.

many faces of bede

Once again there is so much to say that it is overwhelming.
First off the long overdue news…..

You stormed the heavens with us.
You loved, you hoped, you prayed.

Bede’s tumour looks stable. It hasn’t gone back down, it hasn’t grown.
The 6 months we were given has been and gone without us even noticing it’s passing because there was so much living to be done.

I want to jump up and down and scream ‘He’s done it!’ but I think the real proof will be in our next scan in December. Thank you for getting behind our bumble.
In reality we haven’t had much time to think about it there has been too much work to be done!
Bede is a bright determined adventurer. He’s an explorer.

bede walker

He no longer exists in a cold, sterile hospital room. His presence dances through our days. His belongings spill from every surface in our home and his cries and babbles and laughter fill every crevice and surface of our home, our car, our lives and our hearts.
He is determined and he is strong. I suppose his perserverence is nothing surprising but in this new setting, in rehab and intensive therapies, it is awe inspiring. I watch him, our little boy, who fought for his life and who is now determined to live.

bede water bede water 2

Bede loves story time, trying to climb things and music. One of his favourite things is standing in his walking frame and strumming the guitar.

He loves toys that he can control. I think its so frustrating for him not being able to speak yet so he loves things that have a clear cause and effect. He has started learning sign language to communicate with us and is practicing sitting up on his own

There is so much to say but really it boils down to this…

Our family has spent the last 5 months or so in our darkest time. Drifting from positivity. We repeatedly reached out needing a life rope and unfortunately for one reason or another none was there. Bede was well but despite this, we were not. We have been emotionally, practically, financially, physically at our breaking point. One thing has come after the other, a minor example of this was our car and belongings being stolen from our home.

While we have been able to delight in our children and take solace in some of our friendships it is hard to explain just how hard it has been and it has been lonely. Because no one can do it for you.

But we have put one foot in front of the other, and clung to each other and now finally the clouds are parting. We have a carer for the next 6 weeks which is some long awaited help. We feel like we can breathe again and tackle our challenges together and there is space to blog now. So after some unexpected time away, time that we needed to take care of our family, we’re back.

Thank you for holding this space for us.
Thank you for asking after us.
Thank you for letting us know you miss the blog.

Bede is well.

So are we.

16 thoughts on “A Bede Update.

  1. Blessed Bede shines, inspires, and gives hope, without even realising his worth. I pray you burdens lighten, you joy increases, you feet a well and truly on the right path.

  2. Oh Isabella and Roy

    Such wonderful news to hear that Bede is doing well at present. May he continue to explore and discover the wonderful experiences that being a little man entails…..

    You are both the best advocate for your little man, and it shines through in Bede – his determination and zest for life shows in your words and pictures. True testament that love conquers all!

    May your road from now on be a little more smoother, despite the added challenges you did not need to face.

    Sending love, light, laughter and good health vibes to your gorgeous family – today and every day….xxx

  3. It is so wonderful to hear this Isabella. Bede certainly has grown and the photos show he is happy and full of life! You go Bede, you are awesome and have lots of people thinking about you. Lots of love, Silvia xxx

  4. This is wonderful news. I am absolutely thrilled I hearing this. I am sorry for your hardships, but if there’s one thing you as a family have proven time and again ts that if anyone can get through you guys can. All my love always xxxxx

  5. Issy and Roy, if you had half the work you would still do more than most of us and Bede and his brother and sister are very worth it. I so admire you all.
    Maryellen aka Nonna.

  6. So so much love to you all xx And sending you so much light through these dark and difficult times. I am so sorry to read that things have been stolen. it is such a confronting thing finding out that someone has taken your things…hits in unexpected ways. so much love xx

  7. Mighty Bede, how blessed we are to follow your path, sending positive vibrations, love and light to you and your family, and oh what a family….my prayers continue for you all. Stay strong. Lyn 💜

  8. More power and love to you all. If a roller coaster was modeled on your lives few would be brave enough to ride it. Always thinking of you xx

  9. I think of you all often so to hear that Bede is once again fighting strongly is both a blessing and a relief. Much love to you all, I hope things start turning a corner for you xx

  10. Bede is a little champion and your family is such an inspiration. Heartened by your news and you are all in my thoughts and prayers. Bless. x

  11. Beautiful Bede! You are a super hero, you look so strong and happy. You are a lucky boy to have such a wonderful family.
    Hang in there, you are a strong and beautiful family.
    With much love
    The Andersons xx

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