Thursday, February 27, 2014

Our concert adventure

I really struggled back and forth about whether or not to write this post. I didn't want it to come across like we were complaining or ungrateful at all. In the end, I decided to share to help others get a little picture of what people in wheelchairs experience even in what is supposed to be the happiest of events. :) As most of you know, Ryan was hospitalized twice this past December. It was during the second hospital stay that we got a very cool video email message from one of Ryan's favorite singers, Toby Mac! It was through a client of my husband who knows Toby Mac that this was arranged. When we received the video, I watched it multiple times with tears streaming down my face. I was so touched that he took the time on Christmas Eve to send Ryan a video. Shortly after Ryan was released from the hospital, we were informed that my husband's client was going to get us all tickets to attend the Toby Mac concert in Portland the following February. Not only would we get to attend the concert, but, we would get to meet Toby Mac as well! We were ALL excited.

We ended up leaving Joshua at home with Grandma and taking my nephew William along with us. He is a HUGE fan of Toby Mac and Josh wouldn't have cared if he had gone or not. The day of the concert we arrived early. Looking back, much earlier than we really needed to. We were among the first to arrive at the memorial collesium. We were escorted to a waiting area where we were told to wait until someone came to get us and take us to meet Toby Mac. We ended up waiting there for TWO hours. I think we all felt ok with this since we were the first ones in line. It's hard for kids to wait. VERY HARD....especially when one of those kids is starving...... :( But, they did pretty well. One thing to note about Ryan is that he gets cold VERY easily. We were standing near several doors that people were coming and going out of and letting in cold air from outside. Ryan was beginning to get VERY cold and once he gets cold there isn't much we can do to warm him back up again. At home, we pile on heating pads, hot water bottles and hand warmers. But, when away from home, this is much harder to do. Finally the two hour waiting period was up. By this point the waiting area was FULL of people. As the volunteer tried to lead us to where we were to meet up with Toby Mac, we realized quickly that he wanted us to go downstairs. Obviously Ryan cannot go downstairs in his wheelchair. We all began walking toward the elevator (Ryan got lost in the crowd of people) Many are good about moving to the side to let Ryan through in a crowded environment, but, unfortunately, most are NOT so good about this. For a minute there none of us could even find Ryan in the crowd. He's obviously also alot shorter than anyone around him since he is in a sitting position. When we finally found him again we got to the elevator and began our way downstairs. When we arrived to the room where were to meet TB, there was a long line that had formed very quickly. We soon realized that even though we had gotten there first, we were made to go to the very end of the line as we were the last to make it to the room downstairs. (another disadvantage to being in a wheelchair) :(  Now, if it had just been Steve and I, I think I would have been okay with this. But, since we had 3 kids with us (one of them VERY cold at this point) and we had waited the longest, it really sort of bothered me that we were sent to the end of the meet and greet line just because we had to take the elevator. Anyway, we finally did meet up with TB and he spent a fair amount of time with us. He remembered Ryan and that he was the one he had sent a video to. And he was very warm and friendly.

After the meet and greet, we headed back up the elevator to the concert. By this point, William was almost in tears, he was so hungry. Also, at this point, Ryan's chair was extremely low on battery. We had gone to the mall earlier that day and he had done more driving in it than he normally does. So, he was concerned his chair was going to just stop working. I assured William that once we found our seats, I would take him back out to the foyer to get something to eat. He was okay with this. So, Steve put Ryan's chair in manual mode and pushed it for about a 5 minute walk to find our seating entrance "JJ" . (FYI...this is no easy task as Ryan's chair weighs 300 lbs) Anyway, as we entered the concert area an usher greeted us to lead us to our seats. She looked at the tickets, then looked at Ryan. She said that our tickets were NOT handicap seating. And that the only way to our seats was down a HUGE flight of stairs. So, she would go and speak with the manager and see what they could come up with for us. So, Steve stayed with Ryan and I took the younger two to get something to eat. 2  popcorns, 2 bottles of water, a  hotdog and $45 later.....we met back up with Steve and the usher. She told us that all she could do was grab some folding chairs and place us at the top of a row of seats. However, we were right smack in the middle of an aisle with people constantly walking past us. I had brought ear plugs for all of us and Ryan wanted them in his ears. But, he was unable to push them in himself and they kept sliding back out. Mine slid out too. But, I was able to push mine back in. This was so frustrating for Ryan and the fact that he couldn't communicate with me or Steve at all due to the loudness of the concert. After about 20 minutes or so, another gal came in and pulled Steve aside. She said that we would not be allowed to sit where we were sitting and that we would have to either leave or move to our assigned seats. Well, obviously, Ryan could not go down the stairs. :( I told Steve to take William and Jorie down to their seats and I headed into the foyer with Ryan.

So, at this point, Ryan was VERY cold, his chair battery was about to die AND he had to go to the bathroom. I didn't know what to do. I realized that we could sit out there in the foyer and still sort of hear the concert and that at least it wouldn't be so loud for Ryan. But, he was wanting to leave. Of course, I didn't want to leave Steve and the kids there. In the end, we decided to head back out to our van where I could at least warm Ryan up and help him go to the bathroom. Going to the bathroom for Ryan when away from home,  consists of him leaning back in his chair and me using a water bottle or urinal. It's NOT the easiest thing to do. And trying to get his pants back up while he's in a seated position??? Forget about it. Nearly impossible. :( I texted Steve and we both decided it was best that we just wait out the concert in the van, keep Ryan warm and that way we could all head home together rather than making Steve and the kids get a cab. Thankfully, our van has a DVD player in it and Ryan and I were able to warm up and watch a movie while we waited. We were both super bummed that we had come all this way, only to sit in our van for the concert. But, we were glad that we at least got to meet Toby Mac. In the end, I think we all realize that concerts are not for Ryan. Possibly a summer concert outside? That might be an option. But, this was not an ideal situation for Ryan at all for many reasons. And we learned the hard way just like we learned the hard way after our Disney trip. There are just certain events that those in wheelchairs cannot do. Particularly those with Ryan's disease.

3 comments:

  1. It is hard for me as well. I'm 14 and I have cerebral palsy, and thus rely on a walker and powerchair for mobility. There has been instances where I have to stay on lower levels too. Because the only way to get up to the other level is via stairs! I'm upset a lot, but I'm mostly happy! I can truly understand the way Ryan feels!

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    1. Yes it can be very frustrating. Thanks for reading!

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    2. Ryan & I have endured much, but we're very strong! He gets through it, and I do as well!

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