Love, Empathy and Understanding

A child dying is every parent’s nightmare. Knowing someone who has lost a child is a relatively rare experience for most people but I’ve been to far too many of my friends children’s funerals over the years of being Mum to G.

At G’s old school they had a special area, a memorial garden with an array of plaques in memory of the children who had died …how many regular schools have that I wonder!

Some had what is termed as ‘life limiting conditions’ but not all, and no matter the cause or reason for their death, each time it was heartbreaking. Each time my heart went out to the family. Each time I wondered how the hell I would ever be able to breathe in and out again if that was G.

Over the years I’ve noted many reactions to the death of a disabled child. One that has stayed with me is….the sympathy of what the family are going through response tinged with…well what a relief it must be for the family kind of implication. Sometimes this has even been voiced. One family I knew many years ago, had a daughter with Down Syndrome who died tragically from a virus when she was 7 years old (nothing to do with having Down syndrome just a random virus). I recall vividly the Mother telling me how others, even family members had commented that she should draw comfort in the fact that it was J who died and not her younger (non-disabled) sister. It shocked me to the core that so little value was placed on our kids.

Although I’d known many other parents whose kids have died (Some of them close friends) when it happened to Connor it was the hardest. It was also the first time it had impacted on my girls (made so much worse by the fact that their Dad died just 6 weeks before). They’d known Connor, most of their lives, grown up with him, spent time with him, got to know and love him. The nature of his death was the most shocking too – and, difficult 16 months on for even us to get our heads around, let alone his family!

When Connor died there was a collective shock reaction. Others outside family and friends had got to know him through Sara’s blog. They too had seen the joy he brought to his family and everyone else who knew him. They had revelled in the quirky, funny dude who said the funniest things and brought so much joy to so many. They shared Sara’s pain and anguish when he was admitted to the unit and experienced the horrific shock and disbelief at Sara’s post on July 4th 2013. A healthy young man whose death was entirely preventable – who would still been here today had those in charge of his care had ‘cared’ for him as they should have – what’s not to be shocked about?!

Rosi Reed didn’t have the same collective response initially (although I sincerely hope she does now) because she couldn’t share her story. She wasn’t blogging about her beautiful boy. She’d lost touch with her network of friends over the years, she didn’t have a life raft and it seemed that others around her didn’t see him like she (and her close family) did because they didn’t know him.

But surely other parents of disabled kids would understand her loss.

In the work I do I’ve met so many families over the years – A wide range of families from all walks of life and of all ages – Parents of disabled children and adults, brothers and sisters of disabled children and adults, Grandparents caring for their grandchildren, families with step children, foster children, adopted children. We all have different ways of doing things and different ways of reacting to our circumstances…because we are all different and we are each a product of our individual journeys. But, whatever our difference, I’ve always found there is a strong empathy between families of disabled children. We share similar experiences of the system and fight similar battles and that usually results in a common bond.

On Friday I spent the afternoon/early evening at G’s house. The staff had arranged a Halloween party and all the families were invited. We get together fairly regularly for house meetings but not often socially in the house with all our kids. It was lovely to all catch up.

I have a deep affection for the other young people in G’s house and I love how we all look out for each other’s kids. I’d be truly devastated if anything happened to anyone one of them!  So, imagine my disbelief when last month I received this comment in response to the Dust in the Corner : Justice for Nico blog post.

 Not only was this from another parent of a disabled child, but from another parent whose kid shared the same house as Nico!

 Chris Bullmore says:

September 21, 2014 at 9:37 pm (Edit)

What a pity that none of the above contributors has heard what the parents of the other three young people who shared the house with Nico have to say. A very different story would have emerged, and whilst all would sympathise with Nico’s parents a lot of the statements that have been made are not supported by the facts. In due course we are sure they will emerge, but in the meantime it would seem that some are jumping on a bandwagon that simply does not exist in reality, and they should think about what they have said about this event in order, it would seem , to promote their own particular causes.

 *Note he said “while all would sympathise”…not all do!

My response:

The FACT is that a young man died and his parents have not been allowed to understand the full circumstances surrounding his death – over two years since it happened. Not letting them see the findings of an internal investigation because they thought it would be too upsetting for them.
everything written is this blog post are from the families experience. if Southern Health had been more open and transparent perhaps more of the facts would be available and the family wouldn’t be left in this horrible limbo.
the intention of this blog was to give a voice to a grieving mother I personally believe that is a pretty good cause to promote

Then on Thursday this appeared….

  • Intheknowsays:

October 30, 2014 at 8:58 pm (Edit)

Bit difficult for southern health to comment, as they were nothing to do with Nico’ care! The merger happened long after Nico ‘s death. Just waiting…. We are all just waiting….. The truth will out… Then what will the harpies do?!

 I was tempted not to allow this comment, not wanting to upset Rosi and her family –God knows they’ve been through enough. I did however feel that in the spirit of transparency it ought to be out there so approved the comment and replied

My reply

Ridgeway announced that Southern Health would be taking over in March 2012. In April relatives received
letters telling them that they were taking over formally from November 1st 2012 (not long after Nico’s death at all. The fact that when Nico died in the August when this home was still being run under Ridgeway is of no consequence. Southern Health have been responsible for the aftermath and has behaved appallingly to this family as they have with Connor Sparrowhawks.  Every single aspect of Nico’s death has been dealt with by Southern Health since the day he died and it is their legal team who are grinding the family into the ground…so yes actually I think they should comment.

While I understand that as a parent who’s relative is being supported by Southern Health you’re probably very frightened and worried about the future of their (your relatives) support. God knows I would be, your vitriolic response to this family saddens me. I only hope you never have to go through what they have …and then have to receive such lack of compassion not only by another human being but a fellow parent of a disabled child.

I’d also love to know how you could possibly know all or indeed any the true facts when the family don’t.  But, I too hope the truth comes out so Nico’s family can finally find some peace.

As for the Harpies comment, well …I can only say I hope you feel better for releasing all that bile

As I was writing this another comment appeared on my blog…

intheknow says:

October 31, 2014 at 8:55 pm (Edit)

Not bile at all dear. Just a ponderance. Perhaps you should all wait for the inquest verdict, and not be blindly swayed buy subjective comments. Unless you were actually there you have no knowledge of the facts.

The “Harpies” comment and calling me “dear” was actually like a red rag to a bull for me but, I decided to wait…take a deep breath, compose myself and try to put myself in his shoes -try to understand why he’s being the way he is. (clearly a he, a couple of give away’s…‘harpies’…’dear’)

He’s obviously angry and upset at the thought that Southern Health could lose their contract. The staff are probably upset and have no doubt been speaking to him about their experiences – and the equilibrium in his son’s house is no doubt being disturbed. I totally get that! I totally get that as a parent you would desperately want to cling on to the support you feel is working for your son.

What I don’t get is the lack of empathy towards a family who have lost forever their beloved son. I don’t get that as a parent of a disabled son he would deem it appropriate (on any level) to send goading comments that imply he/they know something no else does. The fact this person calls himself ‘in the know’ is a bit disturbing…How does he know? Was he actually there?  – Highly unlikely I think. Were staff there? what do they know that they have shared with him?

The fact is no one knows!…and how tragic is that?

Nico Reed died over two years ago. His family still don’t know the circumstances surrounding his death. They have no answers. The Trust responsible for his ‘care’ have behaved disgracefully to them and the family of Connor Sparrowhawk…end of!

So, my reply to his latest comment


About Oxfordshire Family Support Network

Oxfordshire Family Support Network (OxFSN) is a not-for-profit organisation run by and for family carers of people with learning disabilities – both children and adults. Oxfordshire Family Support Network (OXFSN) was set up in 2007 by family carers who wanted to use their experience to help others in the same situation, based on our belief that family carers are experts by their lived experience.
This entry was posted in Uncategorized. Bookmark the permalink.

6 Responses to Love, Empathy and Understanding

  1. Chris Bullmore says:

    Your rather snide remark that I and ‘in the know’ are one and the same is totally wrong…I say what I feel and don’t need to hide under an alias, unlike some. Your reply seemed to slide round the fact that we don’t know, and won’t know until the inquest, what happened. A fair amount of the delay would appear to have been caused by the need for a two day hearing necessitated by the number of people being called, many at the Reed’s request I understand, and the fact that the coroner didn’t have two clear days until next month. No sinister conspiracy there. I am not, and never have been, a defender of Southern Health, and I was vocal in my opposition to the takeover- and the subsequent, and predictable, course of events have proved my misgivings to be well founded. As the senior management of SH can confirm I and other parents have been in frequent touch with them when we were not satisfied with the care provided. However I am a great believer in establishing the facts and not sounding off in an emotional way. Your constant linking of other events to this one is totally unjustified, and merely exacerbates what is a very delicate situation for all concerned, especially the staff who love and look after my son. The inquest may identify weaknesses, it may make recommendations, on the other hand it may not , and so, until that time I would urge everybody who has become involved , for whatever reasons, to wait and refrain from emotional conjecture and comments that achieve nothing constructive.

  2. emptynestmum says:

    I apologise If I jumped to the wrong conclusion about you and ‘in the know’ being one in the same but it seemed to make the most sense given, both your comments….who the hell is in the know then?????.
    I don’t hide under any alias either. I tweet and publish (on facebook) under my own name…I too want to establish the facts but I don’t see the linking of other events (or lets just call them deaths actually, not events!) as exacerbating anything. And, actually its rather difficult to refrain from the emotional when dealing with people whose kids have died. If you’d like to look at the Justice for LB campaign and the impact it’s having across the social care sector I think you’ll find It’s being and will be very constructive

  3. speakingeye says:

    So two different people have completely undermined their arguments by being abusive ( harpies! ) and patronising ( dear! ). Heigh ho – disappointing but not worth losing any sleep over.

    I just want to say how much I admire you and Sara, your blogs, your campaigns, and your bravery.

    with best wishes

    Fran Kime

  4. StarBar says:

    I can’t believe what I’ve been reading here. Chris, your words have shocked me. I can’t believe that such callous words could come from a fellow parent. The only “snide remark” has come from you. My thoughts are with Nicos family and I hope they receive the information they so rightly deserve. Since reading of LB I have read so many heartbreaking stories, too many! We need change and we need it now #LBBILL

  5. Chris Bullmore says:

    The ‘snide remark’ did not come from fact Emptynestmum apologised for implying that I and ‘In the know’ were one and the same. If you care to re-read my comment carefully I would be interested to know what those ‘callous words’ are. All I called for was for rational comment when the facts were known. The inquest is now over. I would urge you to obtain the transcript of the inquest, including the coroner’s narrative verdict, which will give you a much better idea of what was said than the onesided report in the Oxford Times. Nico’s carer was praised by the Coroner -a rare event apparently – and several of the expert witnesses also praised the staff , level of care and happy atmosphere at the house.I and other parents sat through both days of the inquest, and heard everything that was said, and I hope that other people who were not there get to know all the facts before they comment further.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s