I was pondering this following a recent thread on the Mumsnet Site and have found myself looking back over some of my old posts over the past week or so. It's only really in the past 6 months or so that I have actually "come out" as a blogger within the blogging community, although the reality is I have been writing for years. I wrote my first post on the 1st January 2007 for an earlier blog I had started but my serious, regular blogging began late in 2008 when our lives reached another turning point with Daisy.
Prior to that time, Daisy's life was following a "typical" Costello Syndrome course - lots of hospital stays and already she had undergone several surgeries, but my old blog was already documenting our worries about Daisy's gastrointestinal issue and the lack of either improvement or stability which is normally seen in the syndrome. Similarly, Theo, our oldest son, was on the gifted and talented programme in his junior school and we smiled at his quirks and obsessions putting them all down to the fact that he was so bright and his anxieties we blamed on being the eldest of four. We had no inkling of what was to come. A pivotal point in our life with Daisy, which was already complicated came in September 2008 when she was rushed into hospital with yet another infection and then soon after transferred to Great Ormond Street hospital where she started Total Parenteral Nutrition, the system of delivering nutrients directly into the bloodstream when the gastrointestinal system becomes unfeedable. It was at this point I began to blog in earnest, here is the the first post I ever wrote for Was this in the Plan? My first blog post
Actually it's funny re-reading this and thinking back to the days when Daisy could actually be fed into her gastrostomy (tube which goes directly into her tummy) and reach incredible volumes like 60mls an hour - to put this into context, now, nearly four years later her gastrostomy tube is on permanent free drainage, draining the bile that sits in her stomach, 24 hours a day, she has a surgical jejenostomy which is an opening at the top of her intestine where we are able to put most of her medications and drip feed around 15mls an hour (that's three teaspoons) of feed for around 6 hours a day. Everything else, drugs and nutrition, goes directly into her bloodstream via a hickman line which is tunnelled into a main vein into her heart. And that is in a nutshell why I blog, so much has happened in our lives that there is no way I would be able to remember what happened previously, the blog is a record of our lives and the incredible journey we have travelled with a little girl who keeps defying the odds.
But not only has this blog been a diary of our lives since Daisy's deterioration, it has also been a form of therapy, it has helped me articulate how I feel and get things down in writing that have been going around my head. It has become a constant in my life, an old friend who is there through the good and bad times.
While I started the blog to help family and friends know what is going on it has also helped me manage the information that I want people to know, what I write on my blog is what I need people to know, anything else is either private to our family or hearsay. It has really helped when I do the school run as I know a lot of my local friends read the blog, I don't have to repeat over and over what is happening, particularly when I have my other children with me who need my attention.
I hope through sharing our story and our lives I have helped educate and inform people about what it is like, I know that many of the professionals who are involved with our lives read this and maybe they can take away some experience of the reality of life bringing up children with complex needs.
I have learned so much and grown as a result of the world we have been introduced to, by sharing what this has meant to me I can maybe help other mums starting out on this journey, and share the things I wish I had known when I was first thrown into this world of special needs. I had the highest number of page views for a post I wrote following a conversation with a mum on the children's ward, it was my list of things I someone had told me when Daisy was a newborn; I wish someone had told me
There are two causes close to my heart, Children's Palliative Care and Care for Carers - these are both intertwined, I write a lot about our experiences with our local children's hospice, ShootingStar Chase as I want people to understand the reality of how they support families like ours and by sharing my story as a carer, I hope that the outside world can begin to understand the reality of the situation beyond the stereotype of benefit scroungers, before Daisy I had a career and was the major wage earner, this post shows how quickly things can change; It could be you
Over the years the blog has evolved too as I have begun to write more about the impacts of Daisy's condition on our lives, I was also able to share the impact of having a son with Aspergers and how sometimes, managing the manifestations of autism is harder than dealing with Daisy's medical needs; A different operating system
I have plucked up the courage over the past few months and joined some blogging networks and now I'm taking the plunge and attending the Britmums Blogger Conference. Was this in the Plan? has even been shortlisted in two categories (Inspire & Change) for an award (still time to vote for me to get to the finals, here's the link http://www.britmumsblog.com/announcing-the-bibs-shortlist). But one of the best things about coming out as a blogger is all the other fantastic writing out there that I have discovered, all around the world there are people (lots of women!) just like me writing about their lives, I have learned so much, shared so many experiences and discovered that I am not alone, so I thought I would share a few blogs that I follow
Coffee, Oxygen and Positive Determination is a blog written by my friend Sarah Milne, she has written a few blogs over the years and I avidly followed her writing about her son William's small bowel transplant which he received just as we had confirmation that Daisy's bowel had failed and she was starting TPN
Just Bring the Chocolate is written by another "Special Needs" Mum, Renata. Her son, Dominic has a syndrome without a name (SWAN). Through her blog she also runs the "define normal" blog hop where other special needs mums are able to post links to their blogs.
Looking for Blue Sky is written by a mum in Ireland, like me she has a daughter with complex medical needs as well as a son with Aspergers and a "typical" teenager, I have never met her but feel like she is a kindred spirit!
Downside Up is written by a mum whose daughter has Down's Syndrome, changing and challenging perceptions
Confessions of a junk food junkie this is written by my friend Liz, she was a carer at Daisy's first playgroup many years ago. This blog began as a diary of Liz's weight loss journey but it has grown as she shares other aspects of her life including caring for her terminally ill brother
Things are never as they seem Claire is another TPN mum of four who has recently started this blog, she has very bravely shared her experiences with mental illness and being a mother of children with complex needs.
Lastly Princess Nicola is a blog about another little girl in Australia, Nicola is also one of four, she also has Costello Syndrome, but she is also a Costello Syndrome statistic in that she is now fighting the cancer that is an increase risk with this syndrome. At the moment she is undergoing radiotherapy and her mum's blog is about their journey with Nicola as they fight cancer.
This is a mere drop in the ocean, there are thousands of inspirational writers out there, many of them women like me, sat at their kitchen table, late at night after the children have gone to bed, sharing their thoughts, experiences, wisdom and wit with the world. If you have ever thought about writing do what I did, stop procrastinating and just get on with it, it's cheaper than therapy and who knows, you may just find you like it.