Here's to the geeks - because of them I'm not alone

Sir Tim Berners-Lee, Inventor of the World Wide Web

When I left university and came to London with Andy my first job was a graduate traineeship at Mercury Communications, the telephone company set up as a rival to the de-nationalised British Telecom.  I worked in various bits of the company - from the mobile phone division, to the messaging division to managing the Criminal Justice Sector Marketing for the Government Sector Division.  At this time the internet was in its early infancy and being developed and used by techie people in darkened rooms.  Not long after I joined Mercury a new Chief Executive was appointed, his name was Mike Harris - he was (and is) a real business visionary and he spearheaded a company wide programme called Imagine 97 (bearing in mind it was 1992 at the time!!!) which was focused on getting the whole company to think about the possibilities of communication and technology offered by the company five years on (and beyond).  I vividly remember the main premise was that the communications sector would grow to offer what the company called "PIE in the Palm" - People, Information and Technology in the Palm of your hand.

We take all this for granted these days but at the time there was no internet, mobile phones were like bricks, many people relied on pagers and companies still used technologies such as Telex and Store & Forward Fax solutions to communicate.....this is all gobbledygook to my children who are growing up in a very different world.

I have always been a big internet user, as early as 1995 I was working on my first website (using Lotus Notes for anyone who remembers that) while at Hewlett Packard.  I was an early adopter of some of the American Parenting Websites, precursors to Mumsnet while pregnant with my first two children and by the time Jules came along we were sharing his baby photos via Picasa web albums. And then with Daisy I became involved in the email support group for Costello Syndrome as well as other forums for Special Needs Parents.  This kept me going - knowing that there were other people like me in other parts of the world who could give me support and advice.  The problem was in the early days when Daisy was born I could only tap into that world when I got home from the neonatal unit, where Daisy spent her first two months, or if I spent a night at home during the long first Great Ormond Street stretch.  In between those times life was very lonely and isolated.  I sent text updates to friends and family but no-one really knew or understood what Andy and I were going through as we struggled to manage the needs of our three other (very small) children and our sick child.

Our hospital stays and lives before mobile internet, smart phones and social networking were long and stressful - as they are now, but we also felt very alone and that no-one really knew or understood what was going on with Daisy and what our lives were like.

But thank goodness for technology and the visionaries and the developers of the "killer apps" we used to brainstorm all those years ago in Mercury.  From Daisy's hospital room at the moment I can see across to the former headquarters of Mercury Communications, I often look over with a nostalgic eye as I can see the boardroom windows where we had a celebratory lunch with Mike Harris after the Government Sector Team brought in the contract for a huge Criminal Justice Communcations Network (Police friends are still using this today, it's called the PNN).  I now have that thing we were trying to Imagine all those years ago - I have People, Information and Entertainment in the palm of my hand.  But to the mum of a medical fragile child with very complex needs it's more than that - it's my lifeline, I am not alone anymore.

I have met so many people on the journey with Daisy, all through the easy access I now have to the world wide web, I have reconnected with old friends, I have made new friends - if I had stayed isolated in hospital this just would not have been possible.  Since Daisy has come into our lives our opportunities to socialise and keep in touch with people have been reduced but I love the fact that so many people know Daisy and she has touched their lives.  I know that when we have a crisis she will be in people's thoughts and it gives us strength to know this.

Some friends who don't use social media just don't get it - "why don't you just pick up the phone?" they ask.  Sometimes I just don't want to talk to people and sometimes it's physically impossible to talk to people.  But I know I can share what is going on and that people will know and those who can help will offer to help.  Using social media also helps me to own the information flow about our life.  When you have a child with a complex need your world is on public display, we have found that people will come to their own conclusions about what is going on with your child and what it all means and sometimes if you don't say anything I have found that people think that everything is OK.  Normally when special needs parents are quiet it's because they are struggling as my post Not Waving but Drowning explains.

And today, as we enter our third week in hospital, I need to remind the world that life still goes on for us more than ever.  As always things never ever go smoothly with Daisy's hospital admissions - she is the stuff of Great Ormond Street legends, only last year she came in for a 5 day admission and stayed for 3 months and that was good going!  Having started to recover well from a 5 hour surgery to remove, repair and revise various parts of her gastro-intestinal and urology systems, Daisy threw an initial spanner into the works last week when her hickman line blocked and it took five hours to unblock it so that it could be used. And then later in the week she was found to have a nasty bug in her bladder on top of her usual bugs - knowing Daisy as we do, Andy and I felt she was just not right, the problem is these signs are so subtle that medical staff who are not used to what she is capable of were not as convinced as we were that something was not right and she was brewing something.  Sadly our instincts which have never failed us yet were once again right and Daisy developed severe sepsis on Friday and was poorly over the weekend.  Blood cultures show that she is infected with two particularly nasty bacteria in her central line and she is now being blasted with 3 different types of IV antibiotics.  We don't know at this point if her central line can be saved and only time will tell - but the bottom line is that until we know this we are stuck in hospital for the time being...

The thing is though it doesn't get any easier, it gets harder, while life threatening infections and long hospital stays are part of our life they are not a walk in the park, we may appear to cope but we are as stressed and anxious as we always were - we never know if this is the infection......

That's why I need people to know what is going on in her life and when we are back in hospital , because this is not the norm, and no-one should be complacent about each hospital stay, no matter how many we have.  This is true of all the special needs parents, in fact the more times we go through this sort of thing, the more support we need because our reserves are being whittled away....a text, a facebook like or message, an email, these mean that I am not alone.

Thanks to the internet, my smartphone, my wireless mobile internet - I can still be in touch with the outside world, I don't have to go through this on my own, and hopefully I can help people understand what it's like for families like ours.  I guess looking back to that lifetime ago when we were looking at Mercury's Vision for the future the needs of  parents isolated for long periods in hospital rooms  with their sick children was definitely not on our target demographic radar.   But thank goodness for the techies and the geeks,  because through your killer apps you have opened up the world for me and made sure that Daisy and others like her are no longer out of sight and out of mind......


  1. Mo Ludwig12:17 am

    So very sorry to hear of all these complications. You don't know me, but as you mentioned, there are so many of us out here who have been following Daisy's and your ups-and-downs and tribulations through this blog. Her story and personality are so touching that she is never far from our thoughts. I have lit candles for Daisy and all your family tonight, and holding you tight in my thoughts, willing her to defeat these new obstacles and get back home in a cop-able quality of life once again.
    You have communicated so eloquently about how precious those times are, even though they are so difficult, and her pain levels still high, I am wishing just as hard as I can that you will achieve that tenuous equilibrium once again. All the very best to all your family,
    Mo Ludwig

  2. Philippa Nicholls6:12 pm

    I'm Mandy's sister, she knew your husband Andy at school and you all bumped into each other at Centreparcs this summer. I've just read your post from Monday.....I'm so very sorry about your situation, you will all be in my thoughts from now on; I can't begin to appreciate what you all must go through on a daily basis, I know what it was like when my younger son broke his arm badly at 4 years, I was distraught and so powerless to take the pain and confusion away from him. My love to you all.
    Philippa xxx

  3. Anonymous6:13 pm

    Oh Steph. So eloquently put,and has taken my breath away.And made my fancy pants liquid eyeliner run. You are so often in my thoughts. If it doesn't work on Friday for any reason I am coming to find you. Lots of love Lisa xxx sorry have done anonymous because I did not know what the other things were - first time on mumsnet :-)