Christmas contemplation

Christmas is one of those times of year when we often look back and see how life has changed. Sometimes for the better, sometimes worse.

Pudding in front of a large model polar bear.

I’ve been in a contemplative mood lately. Partly because of the memories that are turning up on Facebook at the moment: three years ago Pudding had just been undergoing testing for the clinical trial that he is now on. Having been through months of heartbreak after diagnosis, the trial brought all sorts of different emotions and worries – would be accepted into the trial? would it make a difference? how long before the treatment would be made widely available?

Three years seems like a lifetime ago now, and although I sometimes speak with other parents who are only just at the start of this MPS journey, it can be hard to remember, truly remember, what those first few months were like. The vagaries of the mind can be quite useful – protecting us from the worst horrors so we (mostly) don’t get stuck in the same loop for ever.

I know I’ve been through so many states of mind – despair, guilt, anger, hope, frustration – and they come and go in unexpected ways, spiralling through the months and years. Never linear, sometimes bursting back in when I think I’ve waved that one goodbye. I’ve come to realise that emotions don’t behave in the way I used to expect.

But lately one has still caught me by surprise and I don’t quite know how to label it. Content isn’t quite right as that implies I’m happy about the situation (I am often happy too but that’s a separate emotion) yet resignation is wrong because it’s too sad. I think the best I can use is acceptance.

I’ve talked before on the blog about accepting this new path, but I guess there is a difference between reluctant acceptance of something that we can’t change and this new feeling of calm deep inside. And that is despite, or possibly even because of, the fact that I do now think we will have to say goodbye to our gorgeous boy way before his time.That will always be something I would change in an instant if I could, and I know that any of those emotions can come back and thump me in an unexpected moment, but for now this is where I am.

All Around the World sticker book. Fold out scenes with 400 animal stickers.Oddly the thing that made me realise it was this book. I bought it five years ago, long before Pudding’s diagnosis and intended to give it to him when he’d grown up enough to be able to use it. Every year I have looked at it in my present drawer and known that time hadn’t come yet. He is nearly seven now, and I’m not sure he will ever reach the stage of being interested/able. And it’s time for it to go to someone else. Previously when I’ve given away a part of the life he will never lead, it has been almost a physical hurt. An arrow to the heart that says, ‘This wasn’t what you expected’. But this time? Acceptance with a smattering of fond nostalgia.

Actually, maybe I was wrong to throw out the word content earlier. I am happy that it will go to another deserving little boy. Content does have a place in this life alongside MPS, and I shouldn’t feel bad about that.

Since moving house, life does seem to have got onto a more even keel. And when I snuggle up on the sofa with my Pudding watching his wholehearted enjoyment of a film, or when Hubby tickles him and brings out his deep chuckle, or when he bounces in excitement with a snowball in each hand, that is what I feel. Deep, deep love and content.

On an end-note, I’d just like to say a thank you to each and every one of you for reading my emotional ramblings and following Pudding’s journey. Wishing you all a contented and loving Christmas!

5 thoughts on “Christmas contemplation

  1. Sharon

    Beautifully written (as always). Wishing your family a happy Christmas with lots of smiles, chuckles, food and tv – all the things you enjoy xx

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  2. Linda

    Hauntingly poignant and brave as usual, helping in so many ways those of us who take journeys we would rather not but there anyway and wouldn’t have it any other way for the sake of our child/ children… Love, joy and peace to you Sally and your family. Linda xx

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