Find your sparkle

Lizzie Deeble by Lizzie Deeble Additional Needs

Lizzie Deeble

Lizzie Deeble

I’m Lizzie, mummy to two beautiful boys. My eldest son, Sebastian, was diagnosed with Duchenne Muscular Dystrophy in October 2016 at the age of 2.5...

Recently I sent a picture to one of my oldest friends. It was a photo of me dancing at my brother’s wedding.

A wedding that had been very difficult for me to attend for many complicated reasons.

She told me how nice it was to see me with a sparkle in my eyes. It made me think a lot.

When you become a parent, it changes you in ways you wouldn’t have imagined. It also changes your lifestyle.

A night out requires meticulous planning and hangovers are almost not worth it when you have to watch Peppa Pig at 6 am the next day. You exchange dancing and girls nights for evenings on the sofa with a baby monitor and a takeaway.

We all know that before we start, and at least from my point of view it is so worth it that I barely think about it.

I very rarely miss my life pre-children.

It is true though that your identity alters along the way and you become someone’s mother first.

And while that is the most amazing thing in the world, it is easy to forget that you were a person just by yourself before, that you are valid and important as you are.

When your child is diagnosed with a degenerative, life limiting disease, it changes you in ways that having children hadn’t. It is like being a grown up on a whole other scale. A Level Adulting.

And that change on top of the average just-having-children change can mean that identity is hard to find.

It is buried under grief, re-learning how to think about life, trying to become everything your child now needs you to be, negotiating a new an overwhelming timetable of appointments and practical responsibilities, and a whole host of other things that come with this kind of diagnosis.

It changes friendships and relationships. It can be all-consuming. It can leave fear that the person who existed before it all has disappeared.

When that photo was taken, I was having fun. Just me. It sounds like a simple thing but it isn’t.

It might sound like a selfish thing and perhaps it is. But it is also powerful. It doesn’t need to be a long time, it doesn’t need to happen often. It wasn’t about dancing or drinking cocktails.

It was about just having a few hours where I let go of the things I carry, the things that have changed me.

It was about realising that I am still in there, that my sparkle hasn’t disappeared for good, it’s just been a little dampened.

So find your sparkle again. Because it’s ok to be you sometimes.

It’s ok to put it all down for an hour or two.

There’s just a chance that it’ll feel a little lighter when you pick it up.

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