The little things, they really are the big things

It would not be an understatement to say that this time, this strange dystopian time of lockdown and social distancing, has been really tough for me.

Having cared for a  child who was frequently immunosuppressed for twelve years,  the concept of social isolation is not a new one.  In fact for all of my friends who care for children with complex needs this is not a new situation. Having to stay at home to avoid infection, practicing aseptic non touch technique, meticulously washing hands, keeping germ free....this was our life for so many years.  Staring at the four magnolia walls of an NHS hospital cubicle...it was my world.


This is a picture of Andy, going through chemo, FaceTiming Daisy who was in the next room as he was immunosuppressed and Daisy was colonised with some pretty nasty bacteria.  We know all about social isolation to protect the vulnerable here....

It's felt tough, having tasted freedom after years of cancelled gigs, holidays, wasted food orders....as plans were thrown awry when Daisy became suddenly and unpredictably unwell...it felt like I was going back into my gilded cage.  No novelty to it, it's a world I know well.

I've felt vulnerable and alone, missing Andy as I try and keep my children safe and be the strong adult once again for them, knowing that despite the fact that they are now teenagers/young adults, I am the one they look to.  I feel a sense of deja vu as we shut the door and hunker down...this was  our life for years... no choice, no freedom, just an institutionalised life of hospitals and unpredictability. 

Yes...the PTSD has  reared it's head.

But I'm in a different place  I can't deny it's hard but I'm trying to reframe it all.  I am better equipped than most people for this life.  After all it's one I know well.  And this time, it's all of us, I'm not alone.

When I speak at conferences I'm often asked what is the one thing I'd like to tell people who have found themselves in circumstances where their lives, like mine, are turned upside down....

The little things are really the big things......

Anyone who has heard me speak knows this.  That's what life with Daisy taught me.

I have never ever taken for granted the little things.

A walk in the park

Time with my family

Sitting on the sofa

Sitting at the dining table

Food together

Being together

The little things

They really are the big things aren't they?

That's the one thing I hope we all take away from this time.  An appreciation of what we have, not what we don't have.  While I struggle to keep my PTSD in check I remind myself of this.

Even though I've been taken back to a time I remember, even though I miss Andy and Daisy more than ever .....

The loneliness is hard, the isolation...but it's not forever. 

We'll get our lives back...and maybe by experiencing just a little of the lives that are lived by so many carers and people isolated by chronic illnesses the lives we get back will be more enriched, our eyes opened.

Most importantly I hope that we will all learn that the little things are really the big things.... take nothing for granted.


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