It can't have escaped anyone's attention that there is a lot going on in my home town of London at the moment - all this week we have had the Diamond Jubilee Celebrations then in a few weeks time the Olympics start.
I want to make sure that my children have some memories of these once in a lifetime events, as well as experience all the other stuff that comes with family life in a fantastic city like London, but our version has to be modified to take into account the unique needs of our family. While the rest of my friends were holding street parties or travelling into London to watch events we were tied to the house, the weather didn't help but in life before Daisy that would not have held us back. With Daisy however something like a street party away from home is a logistical nightmare - I would have loved to have taken her along to one of the local parties but at the moment we are having lots of problems with her stoma bags staying on and her catheters coming out - where would I change these if it happened? By their very nature street parties are outdoor events, and the British weather did not dampen the celebrations locally, but a neutropenic child in the pouring rain is not a good combination, so we gave the street parties a miss. Again crowds of people lining up to watch the river pageant or view the jubilee concert on a screen in a public park are not an attractive option for a boy with aspergers who hates crowds or a harassed parent pushing a wheelchair and a ton of emergency paraphernalia, so instead we took our place on the sofa and relied on the BBC for our jubilee coverage.
But in the back of my mind was the nagging thought that we could do more, why just because we have a slightly more complicated family should we miss out on a national event. It's not like I'm a staunch royalist! I just remember the Silver Jubilee (yes, I'm that old!), it marked out part of my childhood, I wanted my children to remember the Diamond Jubilee and that we had made an effort and done something to mark it. So the spontaneous planning kicked in, the weather, from being tropical the week before was wintery so a barbecue was out of the question, instead we invited a few friends around and had a tea party and watched some of the coverage together. Daisy loved it, she is so sociable and she even started to use a new word, "Queen".
Later in the week I decided to take Daisy to see The Wiggles stage show. To the uninitiated The Wiggles are the biggest thing to happen in Australia, ever - they are huge there, four men in bright shirts singing children's songs, their concerts are sell outs. Now they are not so big in the UK, but Daisy knows them well - probably as a result of hours spent in hospital and desperation on my part to try different dvds to break up the monotony of constant Peppa Pig episodes. I had left it until last minute as I didn't know whether we would be able to manage to get to the venue with all the other complicated logistics and social life of a large family with only one car. I booked the day before and got the last wheelchair accessible spot and a ticket for me, so I decided to spontaneously plan again and go to the concert by public transport. After all - we are the host city for the 2012 Olympics and Paralympics so the trip on the tube by wheelchair and a visit to the theatre should be a walk in the park......hmmm
Theo is very good on public transport, he uses the tube every day to go to school so it's part of his life and the journey we would take included part of his school route so he agreed to come with us to the theatre, wait in Starbucks with his book until the show was over and then come home with us. Thank goodness I asked him to come with us because although the Transport for London website told me that there were lifts at Wimbledon, Earls Court and Hammersmith where we needed to get onto the tube and change lines, it didn't clearly explain that I would need a second pair of hands to lift Daisy's wheelchair in and out of the tube carriage. Now to be fair I could have asked a member of staff to fetch a ramp to help get Daisy on and off the tube but this is not a long distance, intercity train, this is the London Underground on a busy Saturday with hundreds of people getting on and off the train and no member of staff to be seen. So Theo helped me get Daisy onto the tube, get her off the tube to change lines, find the lift to change platforms, get back onto another tube, get off the tube and find yet another lift - and while plenty of people saw us struggling, no-one offered to help, able bodied people got into the lifts who could have walked up stairs and able bodied people sat in the flip down seats which doubled up as wheelchair spaces and didn't think to offer them up. Daisy was oblivious to all of this she was so excited as it was her first trip on the underground, she signed train and every time we went through a tunnel she shouted "dark!" - she loved it and it made the difficulties of getting her to the theatre worthwhile.
Now being a spontaneous planner I had googled the theatre's accessibility for wheelchairs the night before and knew to bring along my RADAR key, the special key to unlock the accessible toilets. As I was going to be on my own in the theatre I wanted to ensure that her stoma bag was OK and her catheter emptied before the performance started, the audience was being held in the lobby before the main doors opened but as the disabled loo was in the auditorium I was told to make my way through and a steward would show us where to go. So far so good, so being very British and polite I inched my way through the crowds of over excited toddlers and their frantic parents, until I reached the middle and the woman I will forever refer to as the Wicked Witch of the West. She refused to move, even when I pointed out that I was not jumping any queue I just needed to get my child to the toilet in order to empty her stoma and catheter before the show started (great now everyone in the lobby knew that my daughter has a stoma and a catheter), "No", she said "I won't move, you will just have to wait". Of course being Britain there was lots of tutting and a space was cleared around her and as I walked past I said "I'm sorry if my disabled child has inconvenienced you, she's just trying to have a childhood"
Needless to say, Daisy loved the show and the Wiggles were amazing - they were so aware that many of their fans have additional needs and came out into the audience to say hello to as many children as possible and Daisy, tucked safely on her viewing platform had her own special handshake from Jeff, the purple Wiggle - she was beside herself and I soon forgot about the wicked witch.
Going home we had to do the journey in reverse, or should have if the lifts to the platform we needed were actually working. Apparently I should have checked the internet before boarding the train according to the less than helpful staff member at the ticket barrier - excuse me? I'm a spontaneous planner - I planned this journey last night when your lifts were all working, am I now expected to check the internet before I step onto a tube to make sure I can actually access the platform? So Theo and I headed to the only working lift to catch a train in the wrong direction to a station where the lift was working so we could change platforms and come back down the line and go in the direction we had wanted in the first place.
We got home eventually, nobody helped lift the wheelchair on or off the tube, I saw a beautiful shiny ramp on the platform at Earls Court but no staff member to use it, but we managed and got home an hour later than we would have if we had been travelling without Daisy, but she got to enjoy the Wiggles and a tube ride all in one day and again happy childhood memories were made.
But what does this mean for the Olympics - this is totally off limits for Daisy, there is no way we could go with her to any of the major events in the centre of London or at the Olympic village if our experience today is anything to go by. This is fine, we actually have tickets for rowing with a wheelchair accessible seat and a reserved parking space, but what if I had really wanted to take her to an athletics event? And what about visitors to London with mobility issues, what about paralympic athletes?
I am determined that our family will not become hostages to disability, we have to make things work for our children so that they can have the experiences and fun that other families take for granted, but the effort to do this is immense, so planned spontaneity it will be with a hefty dose of British stoicism thrown in for good measure.