A while ago Given To Live was asked if we could help a family see a show in the US. This isn’t something we would normally consider but it so happened that GTL would be in the States seeing Pearl Jam and that money had been raised in the States to be used there. Two birds, one stone, an incredible family and Philadelphia-bound are Joshua and his mum and dad, Christina and Josh.
The application came in for Joshua, nine years old with cerebral palsy and an incredible love of Pearl Jam. We’re also so pleased that Christina and Josh are huge Pearl Jam fans as, like so many other parents with a child with a disability, life can be very challenging so it’s a show for everyone.
Joshua, aka the Love Boat Captain - as that’s his favourite song, his anthem and the song that soothed him as a baby - is in a wheelchair, has had several major surgeries, very little speech and a wicked smile. When we skyped with mum and dad to tell them what Given To Live wanted to do for them, Joshua was there as well, Pearl jam was playing and he insisted dancing was part of the call. OK, Skype dancing was a first but the smile and him dancing was definitely a fair trade.
We’ve learned so much about Joshua and all he’s been through during many a Skype call as we’ve put this thing together. Also about mum and dad.
Mum Christina, has arthritis and a thyroid condition. And like so many parents of children with disabilities, she simply smiles and says she’s fine. But Joshua is getting bigger and his weight is a lot to bear – in and out of his chair, the bath, bed. It’s painful and tiring for Christina and we are so glad we can give her this trip as well.
The family is based in New Lenox, Illinois, where Josh is a Battalion Chief in the Fire Department looking after four station houses. This means twentyfour hour shifts when Christina has Joshua and his three year old sister, Maddy, to herself. As Joshua is getting bigger this means the family have to consider moving home or a major refurbishment simply to be able to fit a bigger wheelchair, and a new bath as he gets too heavy to lift easily. Things the vast majority of us never have to consider.
For Christina and Josh, Pearl Jam is a gift. Their first love musically, now also Joshua’s. And it’s not simply a favourite band with favourite songs. Pearl Jam is also a comfort to Joshua which is in turn a comfort to mum and dad. Which means Joshua has something all of his own however difficult his situation is. His band, his music.
Having music that soothes and captivates him also means that mum and dad get time to themselves when he’s content on his own listening to a bootleg, watching shows on youtube. That’s a definite upside. The downside…kids with learning difficulties can get a little fixated at times and there are times when there is only one song that needs to be listened to. Say Yellow Ledbetter, from Mexico City in ’03. All day. It happens.
So for GTL to be able to give this trip, a Pearl Jam road trip, which is what so many fans do or would love to do is a gift for us. It’s a chance for Christina and Josh to do something regular with their son. Take him to a show, share something they all love. We hope to take them to a Wishlist pre-party and hang out with other fans, get their merch, enjoy the day, then the show. Crash of Crashious Roadside Fame is a friend of GTL and will be making Joshua his own personalised hoodie especially for the show.
We got a beautiful message about how excited they are about the shows and how Joshua is starting to understand a little about what’s happening. Mum also sent this:
‘We have been working on identifying the band members by sight and instrument. I swear Eddie is the only one he never gets. Joshua, who sings for Pearl Jam?
‘Joshie, I know you like to sing Pearl Jam, but who sings this song?’
The Love Boat Captain is going to see his friends sing in Philly.
For the last year the Foo Fam, a Facebook group with members from all four corners of the globe, has been supporting Given To Live.