*Updated* Joshua - The Love Boat Captain

stina1118

Wow. I am in tears and beyond words from your post. I needed a little time to craft a reply, because that post left me speechless. Thank you. The time, heart and soul that went into that post means the world to me (us).

Sharing our story was very difficult for me, we tend to keep our life very sheltered. For most of Joshua's life, we have had to live an isolated life. Up until the last few years, Joshua had NO tolerance for noise, crowds, strange places, it would overwhelm him. He could tolerate a minimal amount of social interaction, but usually he has to have his headphones on with his Pearl Jam.

In 2014 he had another surgery and it was pretty major. They rotated both of his femurs and secured with pins and lengthened tendons in his hamstrings, back of his foot. After the surgery, he recovered in a body cast for about 4 weeks and then went in for inpatient rehab for another hospital stay.

He was released in September and had been through so much, we decided to take him to Milwaukee for his very first PJ show. He had only been out of the hospital for a few weeks and he was so excited. We talked about it the whole way there, but when we got to the arena we had to pull into a parking garage.

Now on a normal occasion, a parking garage isn't a big deal. BUT, the only place he knew with a parking garage was the hospital. He fell apart as soon as we pulled in. Inconsolable crying. Josh (dad) and I hit maximum stress levels. We sat in the van with a screaming child, unsure what the hell we were supposed to do. His communication is so limited, especially back then... Rationalizing with him wasn't an option.

It was freezing cold that day and we had an hour before the doors open. So we decided to take him out for a quick walk and show him the area, hoping he would understand this was different. It did help some. We head back to the van to decide what to do, after popping a xanex each (haha) we decided that we came too far not to try. Worst case scenario, we leave.

So we trek in. Our seats were separate from Joshua's because he needed wheelchair accessible seats. Dad was able to take care of it and we got to our section. So far so good. He had PJ on his headphones, looked so stressed out... But he was dealing.

Okay, this may work. Our seats were right in the section, so we decided to stay in the hallway until right before the show started. We could walk a little and let him take everything in. So, we parked in a quiet corner and he just watched it all. He was frozen. You could see the wheels spinning in his head. We talked about what was about to happen and how much fun we were going to have.

Showtime, we are in our seats... The lights start to hit and Joshua got what we call a "body boner". haha (Joshua has very high muscle tone, so when he gets really happy or stressed... His whole body tense up like the tin man.) Then, Red Dot plays and you can almost see the stress turn into pure excitement. It all came together - Stage + Red Dot = Pearl Jam

Joshua was very guarded for most of the show, but he did so well. He couldn't even take his wide eyes off the stage, he was mesmerized. It was pretty cool, because Joshua LOVES Baba and they played that early in the show. (We knew we were going to leave early to avoid the crowds so that was great for him.)

We had a new friend come check on us periodically through the show. (Hi Adam) He's become one of Joshua's biggest fans and we are so grateful to have met him that night. But, Josh and I did feel awkward at times. People were looking at us, some would smile.. Other would give you "that look" like why is he here glance. One drunk dude came and sat on the railing next to Joshua and just stared at us. I felt like I was in a zoo. We tried to just ignore him, but he only intensified our insecurities.

Milwaukee was like a test run for us... Can Joshua handle it? So, when I decided to share our story here on the porch, it was because of the Milwaukee experience. Josh (Dad) said it best, its like exposing your greatest insecurity to the world. Joshua is so innocent, sweet and loving. You can't help, but to want to shelter him from any negativity or hurt.

We knew a tour would eventually be announced and we also knew that Joshua is now going to be a part of our touring experience. It can be hard to approach someone in a wheelchair, especially a child. So, the best way for me to explain it.. My original post was meant to be an "ice breaker". Here we are... You are going to see us... This is our story... Let's be friends.

Now that the Philly journey is done, I am still in awe of the love that has come through to us. That love has changed my son in ways that only he really understands. I am so proud of him, he overcame his anxieties and tolerated so much just to see the band he loves.

To Joshua, this isn't just music and a concert. This is what motivates and inspires him. Pearl Jam stimulates something inside of him, like nothing else can. Pearl Jam LITERALLY motivated him to talk... And now, since Philly he's getting motivated to stand up. Yes, because of standing at the concert and dancing... He now keeps trying to stand up.

Also, Joshua's right side is less severe than the left. He has a hard time moving his left arm and hand. Also, because of his muscle tone raising his arms above his head is challenging. Since Philly, he now tries to lift both arms up between songs when the crowd cheers. He observed everything and now I swear he's trying to practice for the next shows. haha

He's socially interacting with us more, and LOVES telling the story of Philly. "Eddie Vedder sang to us. Joshua's Love Boat Captain". And his newest Knock Knock joke? " Knock Knock... Who's there.. Eddie... Eddie Who?... Eddie Vedder" hahaha

He's grown more confident and just seems inspired. Its amazing. To be honest, it was just the concert.. It was all of the love that so many people shared with us. He felt safe and comfortable, he felt part of something... Just like the rest of us at a Pearl Jam show.

So, F Me In The Brain... Thank you. I feel like we have been given so much throughout this experience, it makes me happy to know we were able to give something in return. I need to hug you one of these days, you are a beautiful soul.

We are debating taking Joshua to Wrigley 2. Dad and I have GA tickets for both nights. I am uneasy with deciding to take him, because there are a lot of elements that can play a factor in it. But, he loves this band so much and the shows do so much for him... It's hard to not try especially since we live in the suburbs. So "to be continued" on that...

So much love to you all. Thank you again, I really can't say it enough.


https://www.youtube.com/watch?v=nEElsVgMWWM

stina1118

You can even see the difference in him between night 1 and 2. He's so much more confident during Baba.


https://www.youtube.com/watch?v=1hombC3Kc2U



https://www.youtube.com/watch?v=_yS-ESDkn6U

F Me In The Brain

I love this place. And of course, your family.

hedonist

Christina, just beautiful. My inability to adequately respond is my response.

Love to your family.

This thread should be stickied, by the way.

stina1118

I agree! (I'm biased haha) The most love filled post on this board. Every comment literally makes us so excited and eager to eventually meet all of you.

I better start saving for next tour, Joshua needs to go meet all of his friends.

RunIntoTheRain

This thread is magical. Such a great place to visit. Always uplifting.

SD48277

Christina, I understand that you need to take a lot into consideration in bringing Joshua to Wrigley, but I hope you do. I'm being selfish, of course, because I want to meet all of you.

motar

There was a solid 22 years of my life where Tremor Christ was my favorite Pearl Jam song. After following this thread and hearing LBC at Philly 2 I feel like I have to formally declare that Love Boat Captain is my favorite Pearl Jam song.

ed243421

F Me speaks so well, for so many

Just one of the many reasons why we are here

Even Ed saw this and knew something had to be said

Has Joshua seen "single video theory" yet?

#lifechanger

Ray J. T.

Joshua has another huge fan here in Miami and I am always rooting for him when I see new updates posted here! I know you guys are facing a tough decision as to bringing him in the pit or not for Wrigley, but selfishly speaking just like SD48277 I hope you guys do bring him along as I would love to see his spirits lifted by the band. We will be there both nights, and for me to say that I was there to see Joshua have the time of his life would make our trip and experience of the shows better than any other show we have ever attended. You guys are an amazing family, and I hope but nothing but great things and blessings to you guys.

oftenreading

Christina, I haven't posted here to date, although I have been following the thread and was lucky enough to be present in Philly when LBC was played for Joshua. I haven't posted because others have said, far more eloquently than I can, what has been on my mind. Please just know that there are many, many others out here in the Pearl Jam community who are rooting for Joshua and his family, and can't wait to see him enjoy shows for many years to come.

stina1118

I'm sorry I haven't been back on here and this reply is delayed. It's been a crazy week around here. Josh (Dad) was out of town and with both kids on summer break this week, I've been pretty consumed!

I love and read every single post. But, sometimes I am a little slow at getting some quiet time to send a thoughtful response.

I'm nervous about Wrigley and I really WANT to take him. Dad and I have 2 GA and 2 Reserved for night 1. We did promise someone our reserves a while back. Before even considering bringing Joshua.

Originally, Philly was for Joshua and Wrigley was for Dad and I. But, now he's so pumped from Philly, it's hard to resist taking him again. So we're considering night 1.

So, here's a quick overview of what I'm considering and maybe some of you can give us some feedback.

-Crowds. Joshua struggles with crowds. He did well at Philly but Wrigley is a whole different lay out. See next point.

- Rain Delay. If you were at Wrigley last time you know exactly what the place was night and how crowded the hallways got.

- Accomodations Wrigley is an old park and it's accessible seating isn't the best. (Usually behind last row in an aisle) So that puts him in the crowded hallway which may not be good for him. Also, being late to the party here... I don't even know if there are accessable seats available.

If we did GA, we could have him all the way in the back of the pit or all the way up front to a far side with a few of us blocking him. But, the heat and weather could play a part in his comfort.

Joshua is about 60 lbs and his chair is about 25. Both could be carried within a certain amount of distance or a few steps.

Either way, we wouldn't arrive to the city too early, because we'd want to bring him in close to show time when the main rush of people died down.

Alright Joshie fans, help me out.. What should I do?!? I know I have to make a decision really soon.

xoxo
Christina

Suziemay

Christina, I love reading your updates about Joshua. Thank you for coming back here and sharing

Wrigley 2013 was not the most pleasant experience for me. It was really hot all day, and then of course the rain delay. I remember using a porta potty once in the stadium, so I don't know where Joshua would go to use the bathroom. I would love nothing more than for Joshua to get to another Pearl Jam show, but I think all the stars would have to align for it to be a good experience for Joshua (and you and Josh) and there are so many factors that are out of your control. Sorry to be a naysayer! And, it's OK for you and Josh to have your show too!

You may have better luck at one of the festivals if you could get to it, I think they will be better set up with ADA seating/facilities than Wrigley. But I could be wrong since I've only been to Wrigley once. Good luck with your decision!

stina1118

Suzie,
Wrigley was the same for us and that's where my concerns come in. I feel very uneasy even thinking about having Joshua in a situation like 2013.

I've had some people say, just take him it will be okay. Sometimes it's hard to know when you are being too guarded or have legitimate concern.

Granted, he is in a diaper and we've gotten good at changing him in our van. But, the other factors really make me nervous.

Josh and I have been back and forth on this since philly. Neither one of us have been able to make a decision. His enthusiasm and excitement since the show is so amazing. But, on the other hand... I am not sure we can accommodate him properly.

That's why I figured I would throw this up here... I needed objective perspective. I appreciate your honesty.

northerndragon

Contact Wrigley and ask about accessible seating, maybe once you hear what they have to say it will probably help make your decision easier. Ask about the possibility of a delay and if there are any procedures in place and what they are for a disabled person.
I know several people would be willing to help as much as they could but unless you feel good about it then it will ruin the experience. I would say you easily have a month to make the call so take the time get all the information you can and make the best decision for all of you.

hedonist

Suziemay said:

Christina, I love reading your updates about Joshua. Thank you for coming back here and sharing

Wrigley 2013 was not the most pleasant experience for me. It was really hot all day, and then of course the rain delay. I remember using a porta potty once in the stadium, so I don't know where Joshua would go to use the bathroom. I would love nothing more than for Joshua to get to another Pearl Jam show, but I think all the stars would have to align for it to be a good experience for Joshua (and you and Josh) and there are so many factors that are out of your control. Sorry to be a naysayer! And, it's OK for you and Josh to have your show too!

You may have better luck at one of the festivals if you could get to it, I think they will be better set up with ADA seating/facilities than Wrigley. But I could be wrong since I've only been to Wrigley once. Good luck with your decision!

Agreed.

Christina, I think in the end you and Josh will / should follow your gut. Done pretty well on that front so far

F Me In The Brain

I agree with Hedo for what it is worth. You and Josh appear to have hit it out of the park on your decisions thus far regarding how to handle Joshua's sense of security in Milwaukee and Philadelphia.

This part hit home for me - "I feel very uneasy even thinking about having Joshua in a situation like 2013. "
Having also been @ Wrigley 2013 I know what a shit show it turned out to be. (And we had a wonderful time overall...but it was nutty.)

You need to go with your intuition and filter out the rest of the noise once you have all of the data you can gather, as ND suggests with contacting Wrigley as well.

If the scenarios are bring Joshua with you guys or go by yourselves then the final outcome looks to be great either way.

pjalive21

ill be honest in 2013 I had field reserved and it was a tight fit where i was at a few row behind GA....as from what I could see GA seemed pretty packed in there, so I don't know if that would be a great idea..as for accessible seating I would definitely call Wrigley as mentioned above. I enjoyed Wrigley minus the storm delay and being packed in the hallways but if you haven't seen a stadium show its worth it

FoxyRedLa

Im not sure where our most recent thread went.....how's the fam? I didn't see any Wrigley updates or pix or anything? What's up?

footsteps10

A little late to the party here, but reading this thread all the way through has put a smile on my face and made me well up a bit. Josh's story is an incredible one, and for you to share this story the way you have is amazing. Thanks for keeping all of us updated! Much love to you guys, and I hope our little Love Boat Captain is alright!

Gonna crank up LBC tonight for you guys. Thank you, Christina, Josh, and of course, Joshua!