|At the start of this year's London Marathon|
Saturday, December 07, 2013
Thank you all so much, I am so delighted to be able to post that I have been selected as one of four official bloggers for the 2014 London Marathon. I am so grateful for each and every vote, thank you so much for taking the time to vote, share my link and asking your friends and family to vote. You have given me a great early Christmas present - the chance to combine two things that have become very important in my life in recent years - blogging and running (but not at the same time, that could be logistically a bit difficult!)
Sunday, November 17, 2013
I am delighted to be a finalist in the competition to be one of 4 official London Marathon Bloggers for the 2014 race. I am down to the final 15 and now the competition has gone to public vote. I was asked to make a 90second video on why I wanted to run the London Marathon and this has now become my first foray into Vlogging (video blogging). Xanthe helped edit it and the ukelele soundtrack is also provided by her.
I was not given much notice to make the video and Daisy was also pretty poorly at the time so it was put together on a Sunday while we were also liaising with the hospital on what new antibiotics to start, delivering blood samples to the ward for analysis and dealing with her seizures and pain - no wonder I look slightly manic in some of the shots!
As you know, and the video explains, I love to run and it helps manage the stress with my life with Daisy. I ran the marathon this year and here are the two blog posts I wrote about my experience with marathon running and why I do it
So - if you would like to help me fulfill my wish to run a sub-4 marathon and raise even more funds for ShootingStar-Chase please click on the link below to vote (it takes seconds!)
Tuesday, November 12, 2013
You may remember that earlier this year I was part of a delegation of Special Needs Bloggers who met with Edward Timpson, MP - Parliamentary-Under Secretary for Children and Families. We had an opportunity to share with him our personal experiences of life parenting a child with disabilities. He was very engaged and appreciated the time we spent helping him understand the realities of life when you are involved in a more extreme form of parenting. In fact after the meeting I received a lovely note from him which even mentioned some of the points I had made and thanked me for my time as he wanted to ensure that he full understood the challenges parents like myself face.
Friday, November 01, 2013
Today is 5 years since I started this blog. 5 years ago, Daisy was 3 years old and was once again in hospital,in the early weeks of a stay which eventually lasted for 12 months. 5 years ago this month she had her first central line inserted into a main vein into her chest, the tip of which rests near her heart, and she started on the intravenous nutrition (TPN) she still needs, 5 years on, to keep her alive. I started this blog as a way of recording what was happening in our lives at the time, over the years it has evolved and changed as we have had to adjust and change to the constant challenges being thrown to us.
Thursday, October 24, 2013
As my children grow up I find myself using some of their phrases to describe things and "dodging a bullet" really does describe what happened to me recently.
|aaah - the wisdom of Yoda...|
When you are a full time parent carer life tends to revolve around the health needs of your child, or in my case children - together with Daisy's ever increasing care needs, IV infusions, TPN, pain
Websites close to my heart
- Shooting Star Chase (Daisy's Hospice)
- Great Ormond Street Hospital Children's Charity
- Torbay Holiday Helper's Network
- Sick Children's Trust
- Daisy's Angels - Facebook Page
- About Costello Syndrome
- Asperger Syndrome
- Caudwell Children
- Together for Short Lives (Children's Hospices in the UK)
- Costello Syndrome Support Group
- Give Kids The World
- PostPals - Putting Smiles on Sick Children's Faces
- Singing Hands (Daisy is their No1 Fan!)
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