Talking about the R word

I’ve having some vivid dreams at the moment. Last Sunday I dreamt I was pushing open the heavy door to a train station, when coming through the door the other way was someone I used to know.  As we passed each other, I said to her “it’s really all about resilience you know.  That’s the key to it all”.  Then I woke up.

Since then I’ve been thinking about resilience a lot. Events of the last few days have caused me to think about resilience even more.   I know the word resilience is getting bandied about more at the moment because of the pandemic but for many of us, it’s something we’ve been living with for years.

In the last few days I’ve heard from two bereaved mums I know. One has been fighting for over 20 years to uncover the truth about her daughter’s death. She’s recently received news the PHSO has ruled the Department of Health and Social Care are guilty of maladministration over the review of her case.  For her to have campaigned tirelessly for over 20 years and got to this point, is enormous.  To have fought for more than 20 years is so utterly consuming, it’s hard to imagine how she must be feeling now the lies around her daughter’s death are crumbling and the truth is starting to leak through the holes of their long, long subterfuge. 

Earlier this week, another mum who has been fighting tirelessly for the truth about her son’s death to be known, moved closer to a kind of justice.  The second investigation into her son’s – which we can call “the truthful investigation” has published and everyone knows now the inquest and the previous investigation was deeply flawed and constructed from lies.  She has been fighting for over 4 years and although in our world that isn’t long (in fact it’s pretty quick), this has been a horrible case and one in which I’ve seen her verbally attacked on social media over and over for her single-minded persistence. 

These two mothers have shown huge resilience.  They had no choice. Without it they would have been shut down and pushed aside by people and organisations with the power to do so.  But why would anyone take on the parent of a child with health problems or disabilities and expect to win?  When it concerns the life and death of that much-loved child, families will fight for the truth and for justice and why on earth would anyone expect to be able to just brush them aside?  Because if there’s one thing we know, it’s that families like us learned resilience a long time ago and we’ve had a lot of time to practice and perfect it.

All parents learn to be resilient but some of us have to be so much more so.  When you have a child with disabilities, or health problems of any kind, every day is some kind of battle.  Whether it’s fighting to get the right treatment at the right time or fighting to ensure your child lives in a safe, healthy environment that meets their essential needs.  Whether you’re battling for the basics; enough daily pads for the incontinent child, a bed to sleep in that will keep them alive, a wheelchair that actually fits and is comfortable, life-saving drugs which actually work, and support at that crucial meeting.  The list is endless…………

Add into that the emails and phone calls which never, ever seem to end.  By the time your child is school age you’ve already learned a depth of resilience which would astound many.  You’ll need that resilience when it comes to the “your child has the right to an education” fight.  A school and the right for your child to have an education are little things which so many of us take for granted.  When my son was small the fight was all about getting them into a really good school, where they would learn, thrive and be happy.  These days the fight’s about just trying to get them into a school, any school.  There are officially over 1,500 disabled children who have not been offered a place in any school and it is thought that the true figure is substantially higher than this, possibly double that figure.   Sometimes when I hear a mum grumble that she hasn’t been able to get her child into the school they wanted and she had to go with the second-choice school, I wonder what she’d think if she knew what the parents of a disabled child go through.

All of that is before you even get to the dreaded “post 19” when your child ceases to be eligible for all the “support and education rights” which apparently they all had so much of before then.

If your child with health problems or disabilities dies an avoidable and needless death, you already have a lifetime of resilience to call on and without doubt, you are going to need it.  Every family story is different, but sadly every family’s stories have certain aspects in common.  All the family ever wants is to be treated with dignity and to be believed.  They want their child’s life to be treated as if it’s important.  They want their child’s death to be treated as if it’s a tragedy.  They want the people in who’s care their child died, to want what they want and as much as they do.  They want them to want truth, justice and learning.

It sounds like such a little thing, such an incredibly obvious thing doesn’t it?  If a child dies in your care wouldn’t you want to just do anything and everything to get to the bottom of why it happened and to make sure it never happens again?  But instead, in almost every family’s story it seems that those with money, power, connections and an ability to work the system to their advantage, do not see the truth as a goal to be fought for and won, they do not see justice as a gain.  They see only what they have to lose.

The average length of time that families fight for the truth is 7 years.  Often it’s much longer.  If you think back on the last 7 years of your life and if you also remember the mum I talked about who’s been fighting for over 20 years, that helps to give a sense of just how long the fight can be.  Families may not have money, power, connections and the ability to play the system but one thing they do have is resilience – and they need to have it in bucketloads.

In these times there’s been a lot of talk about the importance for people of developing resilience.  But the fact is that for many of us, we are already there and we’ve been developing our resilience for a long, long time.

Wordle about all Nicos' wonderful qualities written by his friends
Wordle written about Nico by his friends and produced by Charlotte Sweeney

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