You may have gathered from the blog that I have been staying with Allison and the family for a couple of weeks. Having known Allison and Vernon in the UK I have been following their journey throughout. However I must admit to being a ‘lurker’, reading and waiting for every new post as I am not comfortable writing so publicly.
My first visit to the US has opened my eyes and it has taken me a while to adjust to the sheer openness of the culture. I have to say I am learning a lot. Allison is a fantastic host, managing to take me to places as well as the usual school run, hospital appointments, photo shoots and the usual food shopping and house stuff.
I have seen many changes especially in Maki who I have to say has grown into a confident young adult. He was a shy young boy before who would keep his own company and play with Lego. I can see many similarities between him and Vernon: their sense of humour for starters, a competitive streak, a desire to discover things, and an eye for detail and design.
What has been the highlight (among many) of my visit so far was the day we went to see Vernon and he was so excited to see Alli. He was physically shaking with excitement and shouting her name. It was so beautiful but the best was when Alli and Justine got on the bed with him and were giving him kisses. The photos just don’t give the moment justice, Vernon looks as if in pain when in fact he is just so in the moment, it was magical. The video explains much more than I can here.
To witness the commitment of all that Alli does is huge. But to understand and witness the love and care that is given consistently is a deeply moving. I have met so many of the backup team so to speak, the friends who sit with Vernon when he goes to dialysis 5 days a week, those that pick up Justine from school when Alli is working on a photoshoot or at the hospital, and the really close ties that Maki has with his rock climbing buddies who are like a second/ third family to him.
It has been an experience to be here and see behind the scenes. It isn’t always easy and every day is a moveable feast. I am amazed at how much Alli puts into the day managing to balance work, rest and play. Maybe she needs sponsoring from Mars. (A reference to Cadbury’s Mars bar advert – ‘A Mars a day helps you Work, Rest and Play.’) I forget that the audience straddles our two cultures and some references are missed.
I could honestly go on for pages here so I will quit before you all fall asleep but I must say thank you to Alli for introducing me to such a warm supportive circle of friends and family who I can say are a lifeline not just for Vernon but the whole family.