It's funny the opportunities adversity can throw at you. We have found this with Daisy, we have experienced the lowest of lows at times but also have had a world opened up to us that would never have been possible if we had not been the parents of life limited child with her level of complexity (and huge personality!).
We're not into bucket lists but we also wanted Daisy to be able to experience the things that most other little girls would want to experience, knowing that our time with her was limited. We managed to get her to Disneyland in Florida and even took her to Disneyland Paris . She has met a lot of famous people over the years, not that she would know they were famous, as far as she was concerned they were coming to see her, even if she did ask Johnny Depp (who popped in to see her when visiting Great Ormond Street Hospital) if he had brought Peppa Pig with him! Daisy doesn't have a bucket list, our only wish is for her to have as full and fun a life as possible and to make sure that that involves as much family time and fun as possible - no different to any parent's wishes for their daughter.
When Andy was diagnosed with incurable cancer I felt so helpless, I just wanted to make things better for him, the doctors were focused on treating the cancer and Andy was focused on getting through the treatments. Apart from just being there for him, helping him deal with the side effects and symptoms and keep the plates spinning at home there was not a lot I could do directly for him. But there was one thing that I knew would give him a big boost and help him get through things.
We bonded over a mutual love of music when we first met and it has always been something so important to us - gigs, festivals, there is always music on in the background in our house and we are so grateful that our children have inherited our love of music and have turned their backs on mainstream, manufactured pop for real, boundary pushing, message delivering music.
Twenty years ago, having returned from a 6 month stint in rep in a regional theatre in the Lake District, Andy tried to persuade me to come along to a small, Reading Festival warm up gig by a little known band called the Foo Fighters. I had been working long hours and was too tired to go, and the rest, is history....
Listening to music gets Andy through chemo, it gets me through the long runs that help get my head in the right place to deal with the stress of our complex life. I knew that the one thing I could try and do while Andy was having treatment was to see if I could get him to see his favourite band, and if possible meet the lead singer, Dave Grohl.
So after a few false starts - we had hoped to meet him at Glastonbury but his broken ankle put paid to that, we found ourselves at the Milton Keynes gig on Sunday 6th September
In fact, not just at the gig - thanks to the incredible, caring people the Foo Fighters surround themselves with we found ourselves on chairs at the side of the stage watching the whole gig - surreal!
And then it got better. We met Dave before he went on stage but afterwards as we were sitting backstage waiting for the traffic to clear so that we could drive home, he came over to chat.
Isn't it a relief when you meet your heroes and you find out that they are just as you imagined and more?
We chatted about so much, bands Andy had seen over the years, our children, how a paparazzi picture had caught him out progressing to using a cane to walk before his physio had given the OK...
But the thing that struck me most was the parallels with our approach to life as he talked about the impact of breaking his ankle. He told us that it had taught him to be more patient, that life goes at a slower rate when your mobility is impaired, he said there are good days and bad days on the road to recovery and some days it still really hurts but he echoed Andy's mantra when he said "it is what it is" When the accident happened he still wanted to try keep the momentum of the tour rolling, hence the Milton Keynes gigs and the infamous throne. He has values by which he lives and he didn't want to let people down so he focused on getting mobile again and getting back out playing.
We had the most incredible time at the gig - to sit on the side of the stage, to be treated with such kindness by the Foo family and to have a laugh and a hug with his hero - Andy was walking on air when we got home. He needed this boost and he, we, keep having to pinch ourselves that it actually happened.
Karma can be a good thing. To the people who helped us make this happen, thank you, you know who you are and you know what a lift it has given us xx