Updated: Mar 11, 2020
It has been such a bittersweet week. Carys has unexpectedly lost two of her CFC big brothers.
Craig was seventeen and lived in Scotland. He had battled through so many challenges, but had the biggest smile and most beautiful eyes you’ve ever seen. He couldn’t walk or talk; he couldn’t eat but was fed by a tube straight into his tummy; at night he needed to sleep with an oxygen mask, his bedroom was like a hospital room with all its monitors and machinery and medical equipment.
But that wasn’t what defined him. Courage, determination, love and a beautiful soul, that’s what I see when I remember Craig.
Jacob wasn’t much older than Carys. He put his whole being into his smiles and hugs. I watched his achievements, and he was an inspiration to me, a shining example of what could be accomplished.
Now they’re both gone. No more suffering for them, I know, but its still so hard to accept. Now it’s time for those they leave behind to suffer their loss.
As parents, so much of our day is spent simply taking care of their needs. Their not being here leaves such a huge void, not just in our hearts, or our arms, but simply in the time between waking and sleeping, and often beyond. What do we physically DO when they are no longer with us? How do we fill the time? How do we ever recover?
It has been said that they have earned their angel wings, and now they are healed. It’s a beautiful, comforting thought even for those of us who are non-religious. In Ireland, it used to be believed that butterflies carried the souls of the dead into heaven, and that the white ones in particular bore the souls of children. Perhaps there’s some truth in that, for I have seen butterflies everywhere lately; not real ones, its too cold for them just yet, but representations in picture and words.
And impossibly, unbelievably, in the midst of this sorrow comes joy. For us, at any rate, which kind of makes me feel guilty. How is it possible to experience happiness and sadness in one heart at one time?
Yesterday, I met with Carys’s PT and teacher. Carys demonstrated the Walkolong perfectly; she walked confidently and steadily up and down the packed dining hall, stopping traffic so to speak with her prowess and her unique walking aid.
It was agreed that she would now use it every day in school; in fact, her teacher told me she really believed Carys would benefit from it. Today Carys walked all around school and even outside to the playground and back in it… she was so tired from all her exercise, that she fell asleep waiting for the bus to bring her home!
When I think of our CFC children, I think of butterfly wings; bright and beautiful, fragile and easily bruised, a blaze of glory in a world which would be sadly lacking without them, no matter how short-lived.