"He Hasn't Stopped Smiling All Day"
Smiling isn't something Tony does a lot of these days. At home there are two wonderful children, Holly and Owen, and his beautiful wife Liz. They bring a smile to his face. But it's a smile laced with anguish.
Fifteen years ago Tony was a firefighter, fit and doing something he loved. Yet something wasn't right physically. Nothing major at first, just one of those things that gets shrugged off and you think will be okay. It came and went getting worse, much worse. And tests diagnosed a prolapsed bowel. Two years after the first signs Tony found himself in a wheelchair. His wife is now a carer, two small children find their dad can no longer take them to the park.
A little while ago Liz applied to Given To Live for us to do something for the children, children aged 18 and 13 who have been young carers for as long as they can remember. So long in Owen's case he can't remember anything but his dad in a wheelchair.
As the conversation went on an application for the children grew to include Tony. And Liz. Or more to the point we wanted to give something to Liz but as so often the case with carers her thoughts were to make sure everyone else got looked after, to the extent at first Liz tried to not go with her kids to their show so Given To Live could spend the money on someone else. We left it that Liz would get back to us in a few days with the bands they all wanted to see and the best locations.
It felt very important that everyone had their own show because if they all went together, whilst it would be great to be out together, carers being carers would forget about themselves and take care of Tony.
A few days passed and the show request came in. The Darkness for Holly and Owen, The Stereophonics for Tony and...nothing for Liz. Because the primary carer is so used to forgetting about themselves that even receiving a gift is difficult. We weren't taking no for an answer and some assuring, cajoling and persuading later Liz said she'd love to see the Whitesnake/Def Leppard co-headline show. Not only that we managed to persuade her to accept our offer of giving her a break and she will be having a stay over in a hotel and Holly will be her guest.
Tony is wheelchair bound and in great pain every day due to the prolapsed bowel and he also has COPD, chronic obstructive pulmonary disease, which takes away 7% of his lung capacity every year.
Pain meds help but come with side effects. But no side effect, no pain is greater than not being able to be the father and husband he wants to be, used to be. A pain that that is etched in his face, anguish echoing in his words.
An hour or so after leaving their home, having finalised everything, we received a wonderful thank you message from Liz including 'The kids are hoping that when they wake up that they didn't dream it.' They woke up to find it's not a dream and the sleeps until The Darkness countdown has begun.
The following day we received something about Tony just as wonderful. Liz told us that 'he hasn't stopped smiling all day.'