Saturday, July 13

Sorry, Wriggles

Some days I long to see you run off as if in flight, with the crowds of other children.

Some days I long to see you slurp up a drink noisily and blow bubbles through straws.

Some days I long to just go out for lunch with you and order something off the menu for you to eat: with pleasure. No syringes.

Some days I long to hear your voice join the little words you are learning.

Most days I feel at peace with how things are and focused on your abilities.

All days I feel so heartbreakingly proud of you (except maybe, when you are badgering me for Maisy Mouse DVD again).

And some days I feel bone-crushing guilt and sadness that I couldn't "fix" things for you.

That I can't wave a magic wand.

I feel angry we have to rely on so many people and are only adding to that team, to help you achieve what comes so naturally to other people.

When you cry during physio stretches, I am crying with you. I've just learnt to have invisible tears.

If I had a magic answer, I promise you I would have used it.

You are so good; so happy really. So full of beans, so scornful of fear.

So why do I feel so sad and guilty that I have somewhere failed you? 

How is it possible to feel so grateful, thankful and elated and simultaneously so muddled, confused and aching for this life you never envisaged to go back to being hidden?


  1. Oh missus. I know it's not the same but I know how it feels to have a life that felt so tangibly close snatched away from your grasp. You have not failed Wriggles. You are so ridiculously strong for her she will never think that for a moment. I'm in total awe of you and how you've managed to fight so many battles and obstacles in such a short space of time. Give yourself some credit and take it easy on yourself, you're incredible x

  2. You ask how it's possible to feel so proud of Wriggles and so aching for her at the same time. You didn't ask how it is possible to do so much and fight for so hard for a child, love her so much and devote your life to her, and yet still feel guilty. That's also a good question without a logical answer. And you are not the only parent who feels this way, by far not. xxxx

  3. Oh Amy, I can so relate. I ache for Adam and all that he endures while also being unbelievably proud of how far he's come. I know the thoughts will still be there no matter what I say, but let me add to the others and say that you are NOT a failure. You are a strong and loving mama bear who is looking out for Wriggles best interests all the time. x