Finding the Rainbows

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...

We’ve practiced finding rainbows.

For all of us in this community, COVID-19 and the response to it brings many challenges. We rely on services, on medical appointments, on respite, on school and perhaps most importantly on the carefully constructed set of coping mechanisms that have seen us through moments we thought would bring us down. They might not be sophisticated or complicated - for me they consist of running while ranting to my good friends - releasing both endorphins and pent up emotion, of popping to a good friend for a coffee and, perhaps the one I am missing the most, an hour to myself just to remember who I am. I know that there are so many of us who feel that the rug on which we so delicately balance has been well and truly pulled from under us.

But here’s the thing. We’ve searched for rainbows before.

I think many families of children with additional needs, a life limiting diagnosis, a devastating moment in the lives of everyone they know and love will have felt a sense of recognition over the last few weeks. I am not likening a diagnosis of any kind to the worldwide devastation of a pandemic, I’m really not. I am just saying that I have felt the echoes. And with those echoes comes the knowledge that we will get to the other side.

We know how it feels when life falls apart overnight. We know what it is to feel that the world has changed beyond recognition and that it no longer makes sense. We know isolation, all-encompassing fear and total darkness. We know not understanding how to negotiate a life that feels impossible that somehow has become ours. We know how surreal it is when something we never thought would happen is our new reality. We know, realising that we will never be the same again. We know the endless trawling of Google to find answers that don’t exist. We know being thrust into a world with new rules that we don’t understand, a new language that we’ve never heard.

And then we know learning how to live again.

We know learning how to find the moments that bring us joy. We know looking for the light in the darkness, that it might look different from the light we had before but that, just maybe, it’s stronger. We know working out what hope now means and searching for it.

In short, we’ve got this. We’re the experts here. Our lives are about finding the rainbows and holding on tight.

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