When Daisy was nearly 7 months old she had a gastrostomy tube inserted as an emergency case. It was an emergency because at the time we were relying on a nasal-gastric tube to feed her and her vomiting and excess secretions meant that it would come out several times a day and she was losing weight and dropping her blood sugars constantly as a result - as we now know the weight loss was going to happen regardless as her gut became unfeedable but at the time we had to try every option.
Gastrostomy insertions are often done as a day case or overnight but at that point in her life Daisy was needing intensive care after every anaesthetic so she had 24 hours in ICU plus a couple of days on a surgical ward before she was well enough to come home.
That week in July was a big one in the UK and Daisy and I were able to witness it all , while the rest of the family were at work and school. On the 6th July we turned on the TV for the live announcement of the decision on who was to host the Olympics in 2012 - I had been following the progress of the bid keenly and was over the moon when the announcement was made, hugging Daisy, not really thinking about what the next 7 years would bring.
The next day, we were still glued to the TV as the awful drama of the 7/7 bombings unfolded, the Tavistock Square one was so close to Great Ormond Street Hospital that many of the casaulties were taken there for triage before being moved to A&E. A former work colleague of Andy's, Martine Wright, lost both legs in the Aldgate bombing that day, in a few weeks she will represent Team GB in the Paralympic Sitting Volleyball Team.
7 years on, our life has also completely changed - Daisy has added a few more bits of plumbing to that original gastrostomy, there has been a lot of water under the bridge in terms of her condition and things have not panned out as we thought they would but the most amazing, incredible thing is that 7 years after I held a tiny fragile little baby and hugged her as we heard our home town would be hosting the Olympics, I was able to take a feisty, determined little girl to be part of history as Team GB won its first Gold of the London 2012 Olympics!
Yesterday was a perfect day in so many ways. As always military precision was involved in being able to leave the house by 7am (or a bit later by the time the older children had made several trips back into the house for things they had forgotten) in order to be at Eton Dorney, the Olympic Rowing Venue in time. Daisy was so excited, singing and signing "Row Row your Boat", the rest of us were a bit stressed as despite all our planning for meds, TPN disconnections and contingencies we had completely forgotten to factor in the other big Olympic event on in our area, the cycling time trials which were taking place in Hampton Court, this had led to road closures and delays in our journey.
But we got to the venue with time to spare and the organisation was so impressive. I had booked a disabled parking place, it's always a worry going to somewhere new with a child in a wheelchair, carrying a big bag of emergency kit which included everything from stoma bags, catheters to ketamine and couple that with a very anxious boy with Aspergers (big crowds, new place this was all not a good combination) - but it just went so smoothly. I had been over the moon when, after applying for a range of tickets in the Olympics ticket lottery we had got lucky with 6 tickets for the rowing - until the tickets arrived and I realised that we had tickets for the standing area. I was dreading the thought of 4 hours of standing with the children, Daisy not able to see anything, Theo becoming anxious....
There are not many advantages of having a child with mobility issues, having allocated parking is definitely one of them (and a very essential advantage), the other advantage we discovered yesterday was access to our own separate viewing area, close to the finish line and with an uninterrupted view of the action - bonus!
So yesterday we were there as Helen Glover and Heather Stanning won the women's rowing pair finals - we cheered and waved our union flags as they rowed past us, closely followed by the coaches on bicycles on the towpath. Daisy whooped and cheered with us, not at all phased by the crowds and the noise, just happy to be spending a lovely day out with her family.
Theo coped very well and enjoyed himself. We have learned so much about how his aspergers affects him and when we took a detour to a country pub on the way home for a celebratory late lunch, Theo stayed in the car to snooze and take some time out. Previously we would have insisted he got out of the car and joined us, now we know that for him to cope with the morning's sensory overload he needed time out away from everyone and everything.
Olympic fever has taken over our house, we have a Team GB flag hanging outside the house and the TV coverage is on constantly. I have seen and heard cynical, negative comments about the Olympics but for me it has always been my favourite sporting occasion. I have memories of so many previous Olympics - of the Coe/Ovett battles on the track, Daley Thomson, Olga Korbutt, Linford Christie, Sally Gunnell, Steve Redgrave & Matthew Pinsent. Being so close to the action is so exciting - we have seen paralympic athletes training in Richmond Park, athletes travelling in London, people from all over the world descending on our home town, I don't care about negative comments and cynicism - I am loving it.
Even the most cynical can't help but have been moved by the incredible opening ceremony too - to see our wonderful National Health Service and Daisy's hospital, Great Ormond Street, feature so prominently was so emotional and close to home for us. Daisy absolutely owes her life to our healthcare system. The treatment and support she receives, at no cost to us, has allowed her to defy the odds and live a full and rewarding life.
Faster, Higher, Stronger....it's the Olympic motto, and in this brief moment when we have been have been able to take a bit of time out from our day to day lives and just immerse ourselves in sport, I allow myself to dream that anything is possible....
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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