Butterfly Wings

Butterfly and dandelion

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.

24 thoughts on “Butterfly Wings

  1. Oh Ali – how beautifully you write. You write with such love and compassion. You make me cry laugh and smile. I am sad to hear of the deaths of two children. You express the feelings of sorrow combined with a kind of emptiness and of course some small relief at the end of suffering for the children and their loving families. You are the last person in the world who should feel guilty and I hope you can come to realise this.
    All my love to you and wonderful Carys

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    1. Thanks Grace for your lovely words of support! How are you doing after your own challenges this year? I walked part of the Burren Way last weekend… it was fabulous!

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  2. Bittersweet indeed, Ali – what a week you have had. A lovely tribute to those two young men, and so wonderful to hear your Carys is doing so well with her Walkolong. I’ve heard butterflies can be messengers, that someone is trying to tell you something, so perhaps you seeing them everywhere means you’re being reassured. xx

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  3. A beautiful image. My mum always said robins were spirits coming to visit and show you your in their thoughts. I don’t know how true it is but strangely enough when I think of a lost one there’s usually a robin not far behind. Thinking of you all.

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  4. I can understand your sorrow over the deaths of the two young men, and how it must touch you because of Carys. Looking at it from the outside, it seems as though she and you are fighting her handicaps and she is growing stronger all the time. Whatever the outcome she’s a fighter, and since the doctors seem to know so little about the evolution of her condition, you might find that instead of wings she’s got boxing gloves and she’s going to punch her way through. I hope so 🙂

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  5. So sorry to hear about these two young lads whose lives have been cut short. You express your feelings and emotions so beautifully with this post, with your comparison to the fragility of butterfly wings. Hugs. ❤

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  6. As you say bittersweet Ali and there must be a huge void for the parents of Craig and Jacob. However, it sounds like their parents put everything into making sure that their lives had meaning and purpose as you are doing with Carys. Today is a red letter day with bells on for you both and it is moments like this that are the ones to remember.. hugs XX

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  7. Oh Ali, (((hugs))) It makes it hard to even put words to the feeling, doesn’t it, with so much joy and grief at the same time. I am heartbroken for the parents who have lost their beautiful children. It’s comforting to think they are free of suffering, and perhaps still interact with their families in a way… but that way will never be the same, and I don’t think that nameless void is ever filled until they reunite on the other side. It’s a terrible loss to carry and I guess, through time, you merely learn to live around it.

    And I am thrilled to hear the school is letting Carys use the walkalong and she’s really, really walking. Wow! Seems like she is spreading her own wings in a way. It must be like discovering a whole world from her point of view! 🙂

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    1. Thanks Éilis, you put that so beautifully! As for my little madam, she just wont know herself when she finally starts walking independently! And I do think its when, not if! 😀

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