Joshua @Pearl Jam
A STATE OF LOVE AND TRUST
"The Love Boat Captain Goes to Philly" - a little video we prepared to make everyone look forward to the adventure...
Given To Live got to know the Swansons through plenty of Skyping and messages over the months leading up to the shows in Philly; dad Josh, mum Christina and son Joshua. Also 4-year-old daughter Maddy, who would bound into the picture to say hi and talk about Disney and mermaids...she has yet to discover Pearl Jam.
Talking over the months, we learned so much about Joshua. Just as importantly, we learned a lot about what it's like to be a parent to Joshua. This post is for Christina and Josh, to honour them because they are quite remarkable humans.
When they arrived in Philly, it was well after midnight - twelve hours after leaving Illinois. Throughout the journey, Christina was in contact sending videos of Joshua rocking out to Pearl Jam in the car.
These are very cute and a lot of fun to watch. And this was all the way down from Illinois with an accompaniment of..."louder...clap, mom...again...sing quietly...dance, mom...clap, dad!".
This is how it is. Joshua both loves and needs Pearl Jam. One of the needs is to shut out ambient noise as this is very unsettling for him, so 12 hours of PJ it is - because he doesn't sleep on the road.
So mum and dad arrive and are so calm, so together you'd think they'd just driven around the block. And it's here an education in patience, commitment, giving, willingness and tolerance begins. An education in love and trust.
Watching Josh and Christina work together with Joshua is at times like watching magic. The conversations about his meds, his needs, their knowledge of his wants aren't so much conversations as statements of love; born of deep understanding and unfettered commitment to this incredibly vulnerable child. Their trust in each other so present it is almost tangible.
And Joshua gives himself to them completely. He has no choice but to trust, yet his trust is absolute. Beyond need but with a deep knowledge that he is being loved every step of the way, that these two people will take care of him, put him first and make sure he's as comfortable as is possible in every moment. Each need unspoken because Joshua has so little speech.
Each need met and taken care of. Hungry, thirsty, headphones on to calm, ear defenders off during Once one night because Pearl Jam aren't loud enough, meds given at the best times to ease pain and discomfort during the shows. Mum and dad there every step of the way often forgetting about themselves as is the norm for carers.
On top of all this, Christina battles her own health issues. Not wanting to draw attention away from Joshua, she says little and what little said is understated. But Christina has it tough too. And might not welcome the public exposure but it wouldn't be fair to say nothing, to not honour her too.
To watch Josh and Christina be overwhelmed with both joy and love for Joshua at the shows is something those close by came over afterwards to say they'd never forget.
There is little Joshua wants as gifts or would find useful, it's Pearl Jam, Pearl Jam, Pearl Jam. And then a little more Pearl Jam. So two nights seeing Pearl Jam, whom Joshua sees as his friends, in an environment where they had support, acceptance and encouragement, was as perfect for them as for him.
Two nights amongst friends, drenched in love.
Born from a State of Love and Trust.
BRAIN of J
Joshie dancing and the Salsa song.
Joshua arrived in Philly having rocked out to Pearl Jam all the way from Illinois. And still didn't go straight to sleep. Car rides are tricky because of all the ambient noise, Philly exciting because that means Pearl Jam... but dammit, there's still a day to wait until showtime!
Thursday comes along and a rested Joshua arrives in reception with mum and dad ready to start the day. Wherever there's ambient noise, Joshie will have his headphones on with a Pearl Jam bootleg to soothe and keep the outside noise away. Mexico and MSG 03, Camden 03 either red or blue which are the background colours on a YouTube search are current favourites. Love Boat Captain always gets played and Yellow Ledbetter; Joshie is very specific about which version and mum and dad can't get away with simply putting on YL if it's Mexico that's wanted. YL Mexico 03 it has to be.
There are a lot of people to meet, not least those who have offered to be in the merch line to get the Swansons a bundle that members of the fan club have donated to make sure they are all suitably bedecked in tour goodies. Take a bow and many thanks to Brian and Dave for getting in line a little after 9am, Paul for organising the merch fund and everyone from the Porch who donated. Plenty of hellos at the merch line then to the Wishlist pre-show to get some lunch and say hello to more new friends for Joshua.
Joshua needed some rest and to lie down to stretch his muscles after so much early excitement so we all headed back to the hotel for a while. Joshua knew there was a Pearl Jam show coming but later or this evening doesn't make sense to him so excitement was mingling with frustration. 'Dammit! Where's my Pearl Jam, my friends?' his eyes and body said bright and clear.
Heading back to the arena in good time for the show Joshie again was introduced to new friends who had been following his story. Also Josh and Christina met people wanting to say hi to them, honour their journey, acknowledge what they do for Joshua.
Showtime! At first during the opener, Once, Joshie was cranky.
Was it too much? Sensory overload? Over-stimulating?
No - it wasn't loud enough!
Understandably, Joshua was wearing ear defenders but doing what they're meant to do, they stopped the rock, they had to come off. And they did and Joshua was away on his own journey listening to Pearl Jam, his friends, amongst so many new friends who were rooting for him.
Joshie was truly in his element, at home. With the music that is his safe place, his expression, his comfort. With his mum and dad who love him so beautifully, so fiercely. In a place where everyone knew his friends Pearl Jam so they became his friends, a place where he was utterly accepted.
Joshua dances. It's called the Joshie dance and when Joshua says dance he's asking for so much more than dancing. When Joshua says dance it's an invitation; an invitation to connect, to share, to be a part of his life. When you accept the invitation to dance with Joshua you've said to him...I see you. I see you past the wheelchair, past your difficulties and difference and I accept you. I see you. To dance the Joshie dance with Joshua is a privilege. To watch Joshua, mum and dad dance together at the shows was to see love in its purest form.
Love? Did someone mention a love boat? Pearl Jam does and Love Boat Captain is Joshua's song. And as the intro to LBC is played Ed the singer starts to dedicate LBC to Joshua. The Love Boat Captain has his song dedicated to him by his friends! You can't always be sure that Joshua understands things but he knew Ed was talking about him. He lit up brighter than any star you've ever seen. He sang and danced and clapped along with his song. Mum dissolved into pure joy, dad grinned like a Cheshire cat and Joshua was up on the big screen.
The ADA section was behind stage but in perfect position for Joshua to watch the big screen. Did he see himself? We don't know for sure but he did gaze intently at the screen many times during the show, transfixed with the close ups of his friends Ed, Mike, Stone, Jeff, Matt and Boom.
Or Boom Gaspar on the B3 as Joshua mostly calls him because that's what Ed often does on the boots. Joshua remembers everything that's sung and said on the boots and will spontaneously shout out things said between songs. Pearl Jam fans will know the MSG 03 popsicle moment, so does Joshua.
The show went on with more dancing, singing, clapping and laughing. Joshua was very tired by the end but was loving every second of the show, in turn on mum or dad's lap. As the band went offstage the first of what turned out to be many, many people stopped to talk with Christina and Josh and meet Joshua. People on the ADA platform and behind saying Joshua having so much fun made their night special.
From that moment until they went home people stopped them to say hi, to say seeing mum (she totally missed it) and Joshua on the big screen made the show for them, some said it was the best moment for them at any Pearl Jam show, others said the room changed and the love towards Joshua and his mum and dad during LBC was palpable. Everywhere they went they were stopped...out of the show, into the show the next day, after, having a pre-show snack getting out of the van at the hotel. Everywhere someone wanted to say hi and thank them.
Joshua flaked out in the van in the car park leaving the show and didn't wake until 11 the next day. This time mum and dad chose to take it easy with Joshua keeping him at the hotel until mid afternoon and also not tell him there was another concert so he would stay calm.
No one really knows how the Brain of J works but that day, pre-show, his song selections were the songs from the night before as if he was replaying the experience, with one exception. Joshua can be a little difficult to understand sometimes when there's new words he's getting used to and all day there was one song being requested that no one could figure out and it certainly wasn't from the show the night before. In the end dad went to stat tracker and scrolled through every song until it seemed one fit...Sonic Reducer! You want Sonic Reducer, Joshie? Ya! It all made sense and phonetically it comes out as Samba Memoosa or Salsa Medusa...the Salsa song. But back to the Brain of J...he doesn't request a sonic Reducer as a rule but that day he was insistent and pretty frustrated until dad figured it out. Did he know it was getting played that night? Was he telling us?
Night 2's show was a celebration of Joshua, his mum, dad and the power of music. Joshua was more comfortable understanding where he was, what was happening. Mum and dad relaxed into the show knowing Joshua was at home and comfortable. And Joshua did things he'd never done before. He stood unassisted for a moment, danced standing unassisted for a moment. Watching Joshua over the two nights was watching someone grow in so many ways. There was a perspex panel at the front of the ADA section which was just the right height for Joshua to hold onto.
At first he didn't seem to understand this, then with help and gentle placing of a hand he got to figuring it out. Night 2 he started reaching out to use it for support, still needing help with one hand. Then during Baba, a huge Joshie favourite because it's great for all the best things...singing, dancing and clapping fast...he reached out first with his better hand and then, slowly, deliberately, with his other hand.
He'd done it. Without help.