Tuesday, August 21, 2018

Yes, It Con Get Better

"It's a celebration of everything awesome." This was Nate's explanation of what Comic Con was when asked by his great-grandma.

He's not wrong. I've wanted to attend Comic Con since I was a teenager but by the time I could afford the time and money to go, it had exploded in popularity and I had given up on being able to get tickets. When we did get the chance to go this summer, I was a little nervous about how it would all go down. I knew the crowds would get to Nate and Annie had made it clear she probably wouldn't love it. To our collective delight, we all loved the experience. It really did have everything that Nate thinks is awesome.

As we've seen in past posts Nate has met several Transformers but he had never seen a full-size replica. Unfortunately, he wasn't impressed. He was very worried about how the franchise could continue in the chaotic, inconsistent universe that Michael Bay created in previous....no, I'm kidding. He thought it was awesome.  And he was right.

I got to become an action figure. And my action figure comes with the Infinity Gauntlet. I'll have to open up my notebook of grievances to see who I would snap out of existence.  First on my list, whoever invented jogging. 

Is there anything better than a picture of these two people? This is a picture from the hotel we stayed at. One of the great things about this hotel was that everyone from Magic Wheelchair was staying here and there were roughly 20,000 of them so we always knew we would run into a friendly face when we left our room.

Nate isn't the Pokemon fanatic he was a couple of years ago. I mean, he consumed every bit of Pokemon media that had been created over the last 20 years in about 2 months so the crash was inevitable. But he still likes it and how can you beat seeing a giant Pokemon built out of legos (actually Mega Bloks).

As if San Diego itself wanted to make the trip even more special for us, we happened to catch a fireworks display from our hotel. The fireworks seemed to be coming from Nate's other favorite thing to do in San Diego (Comic Con being first) the aircraft carrier Midway. It was a double threat of enjoyment. Though I did have to hold Nate like this for the duration of the show. R.I.P. my back.

Wearing a Star Wars shirt? Check
Taking a picture with a rebel pilot and Stormtrooper? Check
Excitement turned up to 11? Check
Nothing more needs to be said.

Oh, and we got to sit in a replica of the cockpit of the Millenium Falcon that used actual parts from the film set. I mean, I think the picture tells the story. Nate is super happy, I am in stunned joy and Annie is asking what episode of Star Trek this is from.

Nate LOVES super heroes right now. He's always kind of liked them but right now he is INTO them. He's been reading all of the old comics and will periodically yell at me from where ever he is something like "DAD! HAWKEYE JUST SHOT A BOMB ARROW" or "DAD, DAD, DAD, THIS IS MODOK'S FIRST APPEARANCE".  It's delightful.

The other day we were in a line for something and Nate turned to us and said "Those two kids keep staring at me".  I'm never totally sure how to respond to this. Do I brush it off like it's not big deal, do I tell him that they probably don't see someone with a tube in their throat very often or that they are curious? As I thought about the best way to respond, Nate then said, "They probably know I have SMARD and think it's awesome".  And all I could say was "Keep being you Nate".

One great thing about Comic Con is we DIDN'T feel like people stared at Nate like he was weird or different. Most people just seemed to get joy from seeing someone like Nate out and enjoying the same things as everyone else.

Saturday, July 28, 2018

Con It Get Any Better?

Okay, so we have a lot to cover and I'm not sure how much we can get to. Writing a blog is tough business and I don't keep up to date like I should. And after all of the amazing things that happened last week, we thought it would be best to finally create a Smardypants Instagram, something we'd thought about doing for awhile.

So, in the long stints between updates here, you can keep up-to-date in the most modern-est form of social conveyance by following @smardypantsnate on Instagram.

 CLICK HERE to see the SMARDYpants Insta

We were given a trip to San Diego Comic Con and we have A LOT of pictures. We have so many pictures that if we uploaded them at once, it would clog the internet like a kink in garden hose. It would bulge and strain until finally exploding, covering everyone in random internet.

To save you from that, I'm splitting this entry into two posts. This is about the reason we were there. Next post will be more about our experience at the best nerd gathering since the British Royal Society had their first meeting.

Why did we go to "The Con" you ask? Glad you asked. Turns out there is a fantastic organization called Magic Wheelchair. Their goal is to build a costume for every child's wheelchair and they build some pretty amazing costumes. See some of them below:

This is the image that MARK HAMILL shared on Instagram. 

It's a uniquely awesome goal. I can't speak for all kids in chairs but Nate does't like being in his chair. It's a grim necessity for him. But once he had his costume...he wanted to be in it as much as he could. Watch this video from Magic Wheelchair about the reveal of the costumes and try not to feel better about the world.

But that isn't even the best part. The best part about for Nate is that it made him feel like he was a Jedi. It made him feel cool and happy, like he could take on the whole Empire by himself. He goes from driving a chair to, in his words, piloting a starfighter. 

We felt like people treated Nate the way we see him. Not with pity or sadness but just treating him like the awesome 8 year old he is. The whole experience was just SO positive. 

This year, Magic Wheelchair chose seven kids who received a trip to Comic Con where they would be given a wheelchair costume.  When Saturday came, it was the hottest day of the week and the crowd waiting to see the kids and their costumes was BIG. The noise and the heat put Nate a little on edge but he was excited.

Nate had two teams work on his wheelchair costume. One was the team of Fon Davis, an incredibly talented group of artists led by Fon, a Big Deal in the effects industry. The other team was the team from tested.com and lead by one of the few celebrities I would ever care to meet, Adam Savage.

Eventually, they lifted the drape and revealed Nate's costume, Anakin Skywalker's Jedi Starfighter. And not just any starfighter, but the one from Clone Wars. Nate loves the show so this made him really excited. When he saw it he shouted, "THIS IS AWESOME!!" Of course Nate shouting isn't very loud, unless your in an 8 car ride together, so it's hard to hear. Hopefully the build team heard it.

Nate with his Anakin mask on taking a few zzzzzs while we fitted his chair.

It took a bit to get him settled in it but once he was in, he didn't want to leave. The people that worked on his costume did a fantastic and thoughtful job. It blows my mind to think that this many people took time out of their very busy schedules to build these chairs to make these kids' lives that much better. On top of that, each child was given a really cool hand-drawn logo.

But that wasn't the end of it. Oh no. The Magic Wheelchair people worked tirelessly the whole weekend to make sure the kids had an amazing experience. Next up, a parade across Comic Con.

If the costume made Nate feel like a Jedi, the parade made him feel like a rock star.
All the chairs lined up and paraded across the front of the convention and it was great. Everyone parted to let them through and then clapped and cheered as they went by. I don't know how it made the other kids feel but it made me, Annie and Nate feel so happy and grateful.

When you're used to flying in space, you need your shades back on sunny Earth

Finally, it was all done...oh wait, except it wasn't. Magic Wheelchair partnered up with another cool organization called For The Win Project that takes kids and puts them in their own movie posters and movie trailers.

All seven of the kids were going to be given their own movie posters.

One photo shoot later and Nate was ready to be in his own movie. Nate got to pick the title, tag line and many of the credits. This was the result:

And here he is with his poster, as happy as can be:

He LOVED it. Nate loves to make movie trailers and direct his own short movies with his toys. So you can imagine how awesome he thought it was to be turned into a Jedi and made into the star of his own Star Wars movie. He grinned from ear to ear when it was revealed.

And it didn't hurt that Nate's poster was revealed by Ashley Eckstein. Ashley is the voice actor behind the fan favorite Star Wars character Ashoka from the Clone Wars tv show.

I mean, look at the smile on this kid's face:

I can't say enough about how amazing this all was. Really, I could type endlessly about how amazing an experience it was. But that would be boring. So I won't. Or will I?

No, I won't

But I will say this; I am completely inadequate as a father for Nate. My short comings are many (and varied) and I don't have what it takes to provide him with the life he deserves. But there are incredibly talented and generous people out there, willing to give up their time and energy to help pick up the slack. Magic Wheelchair and For The Win Project helped pick up that slack this past week and made Nate's life better.

And did I mention that I met Adam Savage? Because I did and I'm sure he totally didn't notice how awkward I was. 

Sunday, July 1, 2018

Ooo Ahh, The Magic Wheelchair

There is an organization called Magic Wheelchair that builds really cool wheelchair costumes for kids and sends them to Comic Con. I first found out about this place a few years ago an thought how cool it would be to be able to build something like this for Nate. But I lack pretty much everything required to make that happen.

Fast forward to this year and Magic Wheelchair is building some Star Wars chairs for a few lucky kids.

I was told by some family that they were accepting applications and they would pick a handful of kids so I submitted Nate's name.  To our enormous surprise, Nate was selected. So, in a few weeks, we are headed to Comic Con and Nate is having some incredible builders turn Nate's chair into....something. We're not sure yet but it's going to be something Star Wars themed and Nate is out of his mind excited.

The organization put together a fundraising video and if you look real close, you can see Nate in it. You can check it out here:


Sunday, May 6, 2018

Congrats, you made it!

There was one day, way back when I was in college, that I forgot it was my birthday until my Mom called to wish me a happy birthday. While birthdays for me were great while I was growing up, they definitely weren’t a big deal starting at about age 20.

However, it’s a different story for Nate. As years have gone by, Annie and me, especially Annie, have really wanted to make Nate’s birthday feel special to him. For most people, a birthday is a declaration of, “Hey, we’re glad you're on this planet”. That dictates a certain level of celebration. With Nate though, it’s more than just, “Hey, we’re glad you are on this planet”, it’s also, “you did a great job staying alive this year, congrats!”

This turns his birthday from just a celebration of participation, into a celebration of accomplishment. Very different things and Nate gets very excited about it.

This post is a few weeks late but what're a few weeks between friends. So here are 8 pictures of Nate through the years. P.S. There are more than 8 because I couldn't narrow it down to just 8. In fact, you're lucky it's not 50 pictures. 

One day old Nate. This was the last time Nate slept more than 3 hours at a time.

During one of Nate's first check ups after he was born, he laid on the table in the clinic room and was a ball of energy. He wiggled and squirmed and the doctor put her hands on his head and called Nate perfect and then noting how active he was, commented that he would probably be a great athlete one day.

1 year old: He'd already had one surgery and we were under the impression that we had health issues under control. 

We did not.

2 years old: You think you're cool because you can walk? Well can you draw with both hands! Nate was about 2 years old here.

3 years old: Nate could still sit up fairly well on his own. He got that plush George for his second Christmas and still sleeps with it every night. I think he's too old for it but Annie disagrees. Nate likes it because he uses it to hide his face in case monsters show up.  That's only happened once so I don't know why he's so worried about it. 

Age 4: Nate has really discovered the act of being a mischief maker and fully embraces it. We allow it because I mean, how much mischief can he really get up to. 

Turns out, when you have just enough strength to knock things off of tables, and dial/text people on other people's phones, it's a lot. You can still get up to a lot of mischief.  We had some deprogramming to do.

Age 5: Nate spent his 5th birthday in the hospital with the pulmonary bogeyman, RSV.  It was a rough time but he got through and even had all his presents delivered to him at the hospital. Made for a much better stay than usual. 

The good news is, it's been over two years since Nate has had to be in the hospital as a result of illness. 

Nate graduating from pre-school. Nate got a Thomas the Train toy for graduating. He clutched it all the way home from the store. He had a lot of fun in pre-school and even tried his first brownie there. It was less fun for Annie who also had to attend pre-school. Something she hadn't done for a couple of decades and found she wasn't equipped to handle as well as Nate. 

Though she did enjoy the mid-afternoon snacks.

Age 6: At age 6 Nate's love for babies was at its height.  You can see for yourself in the above picture as he stares adoringly at one of his baby cousins. I could track Nate's growth just by compiling all the pictures he insists I take of him every Sunday with whichever baby cousin he can get his hands on. 

Age 7. What can I say, as much as I miss the sweet little 3 year-old Nate, I love older Nate as well. He talks to us about his life, shares funny stories, expresses his discouragement and makes funny jokes. He's a great friend.

I don't remeber this picture being taken but by the look on his face I can gaurantee he is either planning something mischevious or talking about something mischevious he had done.

We entered the wand store at Harry Potter world and somehow ended up walking out with one. Their sales people are extremely effective. We regretted it about 5 seconds after the purchase and sold it on ebay. 

Finally 8 years old. It seems like a big age and I can't believe how fast it's gone. He has changed in so many ways but I can still look back at old videos, even as early as a few months old and still see the exact same personality shining through.

He isn't an athlete like the doctor proclaimed but that same wiggly, active and curious kid is still there. Besides, who knows how athletic he'll be in 10 years when he gets to strap into an exoframe every morning. 

Monday, January 29, 2018

Fear and Loathing in Disneyland

Much like the Power of Love, navigating an amusement park in a wheelchair is a curious thing. On the one hand, it makes some things easier, shorter wait times for example, on the other hand, it makes nearly everything else much more difficult. 

We wanted to take this trip now because we're honestly not sure how much longer Nate will be able to even go on rides at these parks. Maybe it's the overly cautious nature that has infected me as I've gotten older but this trip had me more nervous than excited. But, Nate really wanted to meet some Transformers and Annie really wanted to meet Boba Fett so we headed south to the two parks.

Nate gets very nervous about going on park rides. He's afraid that they'll get too loud or scary or too physically rough. His trepidation wasn't helped by the Universal Back Lot Tour. What we thought was an exciting journey through warehouse parking lots actually had a few 3D, 360 degree rides. One of them was the King Kong ride. Imagine Star Tours on crack and you've got the gist of it.  Needless to say (and yet I still will say) this took Nate by surprise and put him on edge for our Disneyland trip the next day.

However, I did get to see the clock tower from Back to the Future during the tour so Nate's trauma was worth it. I'd like to think he would have knowingly gone through the terror of that ride to give me this view:

Nate was very nervous about Disneyland the next day.  He knew we were going to go on more rides and he was worried that we would end up in another King Kong situation. After getting through the enormous entry line and being interrogated at Guest Services to make sure we weren't cheating the system we hit the Jungle Cruise.

It took about half of the ride to convince Nate the ride wouldn't be some 3D monstrosity and he started to enjoy himself.

And the Jungle Cruise is accessible apparently so that was great. We rolled his wheelchair right on.  

We actually spent the majority of our days at the two parks meeting characters instead of riding rides. Normally, I'm not a fan of wasting my time at an amusement park meeting a fake Charlie Brown or whatever. To me it's like sitting down for a meal and eating a salad.

Salads do a fine job at keeping people from turning on each other out of hunger before the main course is served at a restaurant but they are not a meal. But up until about 7 years ago, I never had a child and as it turns out, children like meeting characters. So, that's what we did.

We met this guy in Harry Potter World.

The man literally stood in that same spot all day and took pictures with people. And it was vicious. There was no line, it was survival of the fittest. I can't tell you how many adults crowded in front of Nate to get a picture with the fake Hogwarts express conductor of all people. I mean, sure if it was Darth Vader I would understand since he would reward your ambition.

But I'm not sure what it was about these people that when faced with the choice between basic decency and getting a picture with fake Hogwarts express conductor with a bad British accent, made them think, "Yeah, I should step in front of that disabled child to get this picture first. And why shouldn't I!? I work hard, I've earned this!"

Along with Megatron, as mentioned in the last post, we also met Bumblebee and of course, Optimus Prime. Nate meeting Optimus was like a cow that produces the finest milk in the world, utterly amazing.

For the first time in Nate's life, he was star struck. He just stared up at him and smiled. Over the next few days I would catch Nate smiling to himself and upon asking him why he was smiling, he would say he was just thinking about meeting Optimus. It was a really great moment.

However, the joy of meeting the characters at Universal was mildly undercut by the staff. I would like to emphasize that the staff and characters at Universal were super kind and great to us. But one thing they lacked was their ability to give direction. Every time it was our turn to meet a character we would be told to advance and then it was every man for himself. The character handlers wouldn't help us interact or tell us what we should be doing or where we should stand. This led to a few funny and awkward moments.

Like when we got to close to the friendly raptor (because we hadn't been given any instruction) and had the thing roar about into our faces from about 3 inches away because we had gotten way closer than we were supposed to.

Or like when we met Optimus and had no idea what we were supposed to do. Optimus greeted Nate and gave some lines and then there was silence. Were we supposed to talk? Could he even hear us in that costume? Were we just supposed to take a picture? It was an awkward moment so finally, Optimus Prime, leader of the transformers and hero to Nate finally said ..."So where are you from"?

I wouldn't blame you if you thought the term "thrown to the wolves" originated from some harrowing scenario in which someone was literally thrown to some wolves without any help or assistance from those around him. It did not. It was coined by a visitor to Universal Studios, trying desperately to interact with characters who were half blind and deaf from their costumes, while employees looked on in indifference.

Nate trying to be a wizard. He was moderately successful.

Nate being nervous about the ride we were about to do that required 3D glasses.

Where Universal Studios struggled with character interactions, there were much better with rides and lines. They allowed us to the front of EVERYTHING, no questions asked. D-land is more strict and there was at least one occasion where the "cast" member was flat our rude to us. But the character interactions were so much more fun. If the characters themselves weren't engaging us then the handlers made sure to keep things fun and interactive.

Here is Nate being way too happy to join the Dark Side:

When we met Chewy, Nate told him that his wheelchair was his land speeder and got an incredibly enthusiastic reaction. I think meeting Chewy was Annie's favorite since he was so sweet to Nate. 

He did smell like old carpet though.

The whole process of getting Nate on a ride makes us feel like we're a Pit crew. We wait in line for our turn and get as much ready as we can. When it's time for us to load up, one of us will unbuckle Nate while the other unloads the vent and emergency bag. Then one of us gets in the ride and the other hands in the equipment, ending with me trying to get into an awkward ride seat while holding Nate.

When it's done, we hop out as quickly as we can and get Nate buckled back up and all of his equipment back on the chair. It gets exhausting, and we try to be as quick as possible to not hold up the line, but it was a lot of fun going on these rides with Nate and we're happy we can still do it.

Ultimately, we all had a lot of fun. Nate rode some fun rides but had a lot more fun meeting characters and Annie didn't even embarrass us like the time a few years ago when she excitedly announced to Nate, upon meeting a couple of Stormtroopers, that Stormtroopers were the good guys.

Still one of my favorite Disneyland memories, mostly because of the Stormtrooper's reaction. 

This is one of my favorite pictures of Nate. We asked him if wanted to try pulling the sword out of the stone. He told us he knew he couldn't do it because the sword was magic. But he gave it his best anyway.