.....running a 10K race around the country lanes of the Vale of Glamorgan. In fact over the course of 2012 I will be running 7 races of lengths between 10k and half marathon. So why having blogged last week that I have very little spare time am I planning to spend some of it with thousands of other people pounding the streets of the UK?
When Daisy was 6 months old we already knew that her life was limited and that the future with her was uncertain, at that time she had just finished her first long stay at Great Ormond Street having been ventilated for respiratory problems, diagnosed with cardiomyopathy, found to be partially blind and extensively tested to eliminate cancer as being the cause of her pain and constant discomfort. With no family nearby and three other children under the age of 7 to say we were struggling was an understatement. Daisy's neonatologist referred her to our local hospice, Shooting Star Chase and from that time on we were no longer alone.
The word hospice conjours up so many images, often negative, as an adult you associate it with a place to go to die. But a children's hospice, while offering palliative and end of life care and support for life limited children is so much more than that. It envelopes the family and supports them through the hardest time of their lives, that time may be only for a few weeks or months or, as in our case, can go on for years. Over the years we have spent many happy times at Shooting Star Chase, either at Christopher's Hospice in Guildford or Shooting Star House in Hampton. The Guildford Hospice is where we go as a family for a break, Shooting Star House is where Daisy goes for "sleepovers" mainly without us. Going to the hospice has given us respite and a break, it has allowed Daisy the independence to be a little girl and experience happy times away from home, times she could not have anywhere else, it has allowed us to focus on the needs of our other children, their siblings programmes have allowed our other children to realise they are not the only ones. We have met other families and shared their journeys, sometimes to the point where their chid has passed away and lain to rest in the "special room" before their funeral. We have seen how these families continue to receive support as they come to terms with their loss.
This summer our family will mark seven years since we started to receive support from Shooting Star Chase, seven years of knowing that we are not alone on our journey with Daisy, over the past three years since Daisy's condition has deteriorated we have started to receive outreach support from the Palliative Care consultant who works at the hospice, she has worked with counterparts at Great Ormond Street to put in place a symptom management regimen that helps keep Daisy out of hospital and relatively pain free.
All the support we receive costs the taxpayer nothing, it is not dependent on our Primary Care Trust funding it and yet this essential service is not part of the NHS, it is not government funded. It is funded entirely by voluntary donations. Across the UK there are an estimated 23,500 children who will die before they reach adulthood, children's hospices like Shooting Star Chase give families like ours a lifeline, they provide care at the hospice or in the home and support the family all through the journey of their child's illness and after...
So that's why I will be spending Mother's day running around the country lanes of the Vale of Glamorgan when I could be lying in bed. I have decided that I need to do something to mark the seven years of care and support we have received from Shooting Star Chase. The run on Mother's Day is the first of seven races I have entered this year of distances ranging from 10k to half marathon length and culminating in the Shooting Star Chase 10K at Loseley Park in Guildford. You can read details of all the races I have entered and sponsor me on my Just Giving Page at www.justgiving.com/stephnimmo . You can find out more about Shooting Star Chase here and for more information about other Children's Hospices in the UK take a look at Together for Short Lives.
I will also be updating my blog with my progress after each race. - wish me luck!
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!)
special needs (85) costello syndrome (43) disability (32) TPN (18) aspergers (18) cancer (18) Great Ormond Street (17) carers (16) parenting (13) autism (9) shooting star chase (9) children's hospice (8) Blogging (6) family (6) SEN (5) hospice (5) Mitrofanoff (4) BIBs (3) Britmums (3) Neuropathic Bladder (3) communication (3) diagnosis (3) holiday (3) benefit cuts (2) david cameron (2) gastroenterology (2) singing hands (2) travel insurance (2) BSL (1) Child Hospice (1) Colectomy (1) antibiotics (1) benefit scrounger (1) bladder (1) france (1) health (1) line infection (1) makaton (1) portage (1) siblings (1) sign language (1) sign supported english (1) ultrasound (1)