I have wanted to be blogging more. We have all just slid into this joy and peace of being at home. Watching our boys grow together as brothers in love and laughter and natural light.
We have had 4 weeks at home with Bede well which is our longest stint ever and I can’t wait to share with you all the photos of our adventures, the videos of his contagious laughter, his resilient playfulness and his growth. Because he has been growing and developing beautifully and our confidence has been blossoming.
Unfortunately a mistake was made in Bede’s care that left him to become quite ill over some weeks. From my perspective that illness resembled tumour growth and as I watched him grow sicker my confidence wilted, a seed of throbbing sadness planted itself in my heart.
Then the mistake was discovered and Bede has been reclaiming himself and it explained nearly all of his symptoms.
So now we have no idea what will happen today.
We are confused. We are hoping and praying and believing and touching wood that todays MRI is stable or even that the tumour is shrinking. We are trusting.
We are still on this rollercoaster and what a privilege it is to be riding it with him but today our stomachs are churning and we are disoriented.
If you have a prayer, a wish, some love, some hope, a giggle, a thought, a grin, a ray of sunshine, a miracle, an endless summer, a pocketful of stars, to send his way it would mean the world.
Bede continues to meet the challenges that cancer and the people around him throw at him and he does it with a smile on his face.
I want a do over of the last few weeks. I want him to keep knowing our love, to keep playing and laughing and listening to his brother tell stories.
I want him to continue growing and the tumour to continue retreating from his glorious love filled light.
We cradle him in our love, treasuring him.
He may be small but once again he has proven that he is formidable, he is mighty.