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.
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 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.