There 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 Ollie’s 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.
“They’re dead. They’re 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 wasn’t 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 didn’t 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 don’t 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 didn’t 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 Ollie’s 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 mum’s 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 Katie’s birth to Ollie’s 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 I’d discuss issues relating to him, sometimes I wouldn’t.
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 Ollie’s 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 boy’s 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 couldn’t 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 brother’s 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 Ollie’s 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.