February12014

Press Release. CMV: No need for ignorance.

Gloucester mum Sarah James has spoken out against inaccurate and misleading newspaper reports around a rare and life-threatening condition contracted by her own son.

Oliver was just 8 years old when he died from complications associated with Cerebral Palsy which was caused by congenital Cytomegalovirus (CMV).

This week the Sunderland Echo and Daily Mail ran stories about Bryant Hackett, a teenager from Sunderland who has been excluded from his school and from mixing with his sister and other girls because of ignorance surrounding the CMV which he contracted.

Sarah says: “It is sad that simple ignorance can affect a boy’s life in such a way. I contracted CMV for the first time in the early part of my pregnancy with Ollie. I experienced symptoms of a simple cold. Unfortunately, the virus passed across the placenta and affected Ollie, leaving him profoundly deaf, blind, wheel-chair bound and unable to communicate. But as well as his physical condition, he and I also experienced a lot of prejudice and, in the early years of his life we felt isolated frequently.”

CMV, or Cytomegalovirus, is a common virus that can infect people of all ages. Healthy adults and children will often have no signs or symptoms, and no long-term effects from CMV. However it can be dangerous to unborn babies if a pregnant woman catches it for the first time and passes the virus on to her unborn child.

Sarah says: “CMV is an awful virus and one that is simply not understood in our society. It is called by one of our leading specialists ‘the Stealth Virus’. But it is certainly not a reason to exclude people who have it from society.

“The best gift that the boy in Sunderland could give to girls in his friendship circle and school is CMV then they will have contracted it for life before they get pregnant. Around 80% of people will get it at some time in their lives and around a third of secondary school children will have it so how ridiculous is it to isolate one child just because he has been tested positive?

“Expectant mothers can best protect themselves by good hygiene and hand washing.”

Many people showed fear out of ignorance towards Sarah and Ollie when he was alive and Sarah is determined to raise awareness of the condition to dissipate this ignorance. To this end, she has written a book, set to be pitched to publishers and literary agents this month.

She says: “Ollie’s Story tells not only of my negative experiences but also the positive side of having a special needs child and the amazing community that exists where mums and dads around the world support each other.”

Follow Sarah and Ollie’s story on Twitter and Facebook @Olliesstory

 

September152013

This is me, Sarah, describing the impact of CMV on my lovely boy Ollie whose birthday it is today. x #olliesstory

September42013

Beautiful Emily’s story, told by her mum Tracy. #olliesstory

August102013

Ollie’s friend Elsie died 5 years ago today at just 1 year, 11 days old and as a result of Krabbe’s Leukodystrophy. Here is her mum Sarah S.

August52013

Walk in Our Shoes: Educating Paid Carers

I thought long and hard about writing this post. The more I thought about it, the more I realised that this post is one of the main reasons I want Ollie’s Story to be published.

Recently, I have been attending a training course. It was a manual handling course, training with experienced care practitioners who, once qualified, will be training their colleagues in the care and health industry. I naturally shared my experiences of having been the parent of a profoundly disabled child as well as my current role now working as a health care assistant/support worker.

The responses to my disclosure went from staggered through uninformed to genuine interest and a desire to hear my story and opinions. I received comments along the lines of “how was your son affected?”.
My usual response of quadriplegic cerebral palsy, deaf, blind etc. was duly trotted out. It led to an unexpected range of responses…
Carer A: “Was he aware?”
Me: “Ollie was like a 3 month old.”
Carers A “So like a big baby in nappies?! I used to work with adults like that.”
OMG! It took all my strength not to rip into her with a snarl.
A couple of days later I am talking about endurance and exhaustion in family ‘carers’, telling of how they become desensitised to extreme situations because they happen so regularly.
Carer B: “Straight question for you….did you ever feel like ending it for your child? How could you and they have lived like this?!”
A couple of days later still and we are looking at bed systems with built-in slide sheets. They are quite unique looking and I stated that I would have refused one for Ollie because they only come in one colour which wouldn’t have matched his beautiful, blue bedroom.
Carer C looked at me and said: “Why would it matter? Your son wouldn’t have known or cared what he was lying on?!”
I responded: “But I would have known and I cared greatly how Ollie looked and was perceived by others, just like any other parent.”

This brief insight into the way some professional carers think saddens me and makes me realise that there is a need for a lot more knowledge and understanding in the nursing and caring professions.
I really don’t want to preach, lecture or rage about people’s misconceptions but I want to share my experiences with Ollie and those of the other mums in Ollie’s Story and hopefully give people an insight into what it can be like to walk in our shoes.

July52013

Deb Dupree tells of her son’s extremely rare condition. Friend of Ollie and part of Ollie’s Story.

June292013

This is Ju. Her daughter Lia was Ollie’s first friend. Learn about her condition. Oh…and meet our cat Archie too.

April82013

Introducing My Robot Friends

imageimageThere is no doubt that Facebook has its downsides. As I write this blog my own son is finding his way in the world of social media and, I have to admit, that despite being on Facebook for many years now, I find myself on a learning curve.

But despite the criticism that can be thrown at social networking sites such as Facebook and Twitter and, perhaps, the internet in general, I have a story to tell that might reveal some of the good stuff that is going on through such websites as well as on chat rooms and forums.

I first stepped into the virtual world just after Ollies diagnosis. I had had many strange words and phrases thrown at me in those first weeks Congenital CMV and Cerebral Palsy to name but two. I knew little about the world of special needs and disability and understood the terms used even less. So I turned to the internet which, believe it or not, was pretty immature 10 years ago.

I started by researching the words and phrases I had been introduced to. After one particularly harrowing afternoon spent exploring websites that seemed to reveal a dismal future for my newborn baby, I phoned hubby Rob in floods of tears.

Theyre dead. Theyre all dead. I spluttered through floods of tears.

Who are? He replied confused.

The children with CMV. They all die really young. Our Ollie is going to die.

Well, eventually he calmed me down but my research had shown me what the future was and it wasnt bright. Not all congenital CMV children die but Ollie was an extreme case, severely affected by this ruthless condition and my brief research into similar stories had revealed some very unhappy endings.

Despite this emotional first experience I returned to the internet and soon discovered Listserv. For those of you too young to know or who came to the internet later than me, Listserv was a kind of forum system. You join the mailing list and then all the messages posted are emailed automatically to all members of the list. I think my first Listserv group was hosted by Yahoo.

Through my Listserv encounter I found out a load of information about CMV.

I then discovered forums and joined two in particular the forum hosted by the charity SCOPE, where there was a specific area for parents of children with cerebral palsy, and the Special Kids In The UK forum. This second forum was where I truly became empowered with information about everything from vomiting to seizures.

I also came across other groups that included a large number of mums of special needs children in The States. Now, although I wholeheartedly support any group that offers support, I have to say that I didnt find some of these groups as relevant to me as the other forums and groups. Without wishing to offend my many American friends, I must say that I struggle with the huge amount of religion that is fundamental to the American way of life. To say that America has to deal with so many tragedies such as storms that take thousands of lives and the use and abuse of guns, it is a country that has an unswerving faith, particularly in Christianity. Not being religious and not being able to relate to religion I find this hard to swallow.

I would add that while I dont understand religion, I do understand the support that people get from sharing a faith. It could be said that the centre of my support was The James Hopkins Trust where I found like-minded people with whom I could share my emotional journey. I didnt feel a need to look to an organised religion for my support.

Anyway, I digress. I had received a lot of support from the various online communities that spoke to parents (well mums) of children with special needs. But little was I to know that I would receive some of the most amazing support at Ollies death from a surprising group of friends those ordinary, non-special needs mums that I met through a forum for mums of children born in 2006.

After my positive experiences in special needs online communities, I decided to join a mums forum on the Baby Centre website. The only thing I initially had in common with these mums was that we had all given birth in the same month and year no more, no less.

But these mums would surprise me.

We started on the Baby Centre website a huge number of us but after a while our group started to whittle down to around 80. But by the time Ollie died the members were living all over the world from New Zealand to Portugal. When we realised that we had a core group we shifted the whole group to a private Facebook group as Facebook was growing in popularity by then.

During the four years I was in the group between joining around Katies birth to Ollies death, I would go to the group page to discuss a wide range of things. We would discuss our parenting experiences and even wider family experiences. They all knew Ollie was deaf, blind and had cerebral palsy as a result of congenital CMV. Sometimes Id discuss issues relating to him, sometimes I wouldnt.

But on the day he died I posted a message on the group who had been quietly and unobtrusively waiting and watching in an online vigil. Within hours the message spread. My first amazing event was when one of the mums, who made jewellery, private messaged me offering to make a thumb-print necklace from Ollies fingerprint. I was astounded at this kind gesture. She sent me a package of two putty-like substances that had to be mixed together and then placed on my boys finger to take the print then dried before being returned to her to be used as a mould. Obviously, due to the fact that Ollie was now lying prepared for burial and his body was going through changes in death, we had to be quick.

I just couldnt bring myself to focus on this small challenge at this point. I was exhausted after 10 days of holding Ollie through the final days and then his death. So our wonderful friend and nurse to Ollie, Mandi, took the materials to Acorns Hospice and returned with a beautiful imprint of his finger.

The result was a stunning necklace delivered packaged in delicate grey organza and accompanied by the mould itself which can be used in the future perhaps for cuff-links for Rob or items for Katie and Alex.

The second amazing outcome was that I also received by post two gorgeous memory boxes one for Alex and one for Katie in which they could keep mementos of their brothers life. A wonderful idea and one that was agreed upon and organised by all the members of the group and then presented to me by two of the mums who lived closest to me.

And the third and final gesture that came out of this lovely group of my robot friends, as I came to call them, was that two mums, representing the rest of the group, came to Ollies funeral. And as they left the church they quietly and unobtrusively slipped an envelope into the collection plate.

I would later discover that it contained £250 of cash donations from the group members.

Thank you to all my robot friends. This diverse group of wise, funny and engaging women who, with their wide range of life experiences, form a fantastic resource for advice and emotional support - often looking at things from a perspective you hadn’t considered. I have learnt much from them during our online time together.

March192013

A Time for Grieving and a Chime for Mourning

Some people find it hard to understand how laughter fits into tragedy and grieving. I have always found laughter to be essential in my life. Flippin’ ‘eck, if I hadn’t learned to find the strangest of situations funny then I think I’d have gone mad by now.
Right from day one I have planned to make sure that people can laugh at mine and Ollie’s story. And since Ollie’s death I’ve met a lot of people who share this view. I’ve also met a lot of people who certainly don’t share my ability to laugh at the crap life throws at you but that’s their choice.
So many times I’ve caught people off-guard with my ‘funeral humour’. I remember how fed up I would get with that pitying look in people’s eyes and one day a woman who approached me and Ollie in the supermarket – just out of curiosity – got more than she bargained for.
“Ahhhh,” She said with that awful, feel-sorry-for-you look on her face that people seem to manipulate their features into 100 yards before they reach you. “What’s the matter with him?”
I peered over the wheelchair before me at my son and with a sharp intake of breath I said: “Oh my God! He was fine when I left the house this morning!” And with that I wandered off in the other direction.
So it was with relief that I found myself presented with a situation that would raise a smile from my friends at the very lowest point in Ollie’s story – his death.
We were at Acorns Children’s Hospice. Ollie had already died. He had taken his last breath. I had dissolved into uncontrollable sobs. Alex had gone flying out of the room with Rob hot on his heels.
Ju had shot up the motorway from Gloucester to Worcester to be with me and now we were sitting together at his bedside. There we were – Ju and I together in body and mind and Ollie with us in spirit - if you choose to believe that option.
I had had my breakdown on his last breath, shouting out in pain and crumpling to the floor. And at the point of this particular tale I was sat with my best mate experiencing a few moments of natural respite that precedes the next wave of realisation and, with it, fresh emotion. But my head was a mess and I was already finding the whole thing surreal when I heard - the bell.
Like the tolling of some ancient death knell it rang out – a deep, monotone ‘bong’. Not trusting my mind at this crucial moment, I chose to ignore it.
A few minutes later the ominous toll was heard again. Ju and I looked at each other.
“Did you hear that too?”
“Yes.” Said Ju.
“What do you think it was?”
“I dunno babes,” said Ju. “Do you think they ring a bell or something when someone’s died in here?”
For a brief moment this seemed feasible. It seemed fitting that the staff at the hospice should toll a bell to mark my Ollie’s death.
In hindsight, even entertaining such a thought seems ridiculous but when you’ve spent two weeks in a darkened room, awaiting the last breath of your loved one, your mind plays tricks on you.
So we sat and waited until we heard the ‘bong’ again. At this point, Rob returned to the room at the very moment that the bell clanged its eerie chime one more time.
“Throw me my phone, I’ve got a message.” He said.
As I reached for the brand new iPhone lying near me realisation struck. Rob had spent the hours preceding Ollie’s death playing with the settings on his new toy and had obviously chosen a new message alert tone. Rather inappropriately – or perhaps not – he had chosen the tolling bell.
Ju and I just dissolved into highly inappropriate giggles much to Rob’s horror and confusion.
I’ve told this story many times and I have to admit that my natural fascination with humankind leads me to watch with interest the many different reactions. Some friends laugh with me. Some look at me in horror. Others in disgust. Most are unsure whether to laugh or cry. But then that pretty much sums it up.
Trust me when I say there were plenty of opportunities after Ollie’s death for my family to experience appropriately sad emotions…and we truly experienced them all.

March32013
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