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 one kid 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:


https://www.kickstarter.com/projects/magicwheelchair/magic-wheelchairs-epic-star-wars-fan-experience

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. 

Wednesday, November 15, 2017

Nate and The Decepticon


Since Nate was about 3 ½ he has had one love, Transformers. Sure, he has many other interests but Transformers has been his true love that he always comes back to. So imagine extreme excitement when he finally had the chance to meet one, and it couldn’t come at a better time.

Nate with one of his favorite Transformer toys.
Nate is now in second grade, and while it’s been a great year for him so far, it had a bumpy start and we continue to struggle with the challenges that come with SMARD and going to school.

Over the summer we lost Nate’s nurse that he had had for the last couple of years. We know that Nate’s life will consist of a revolving door of nurses but it was still difficult to lose a nurse that we trusted, liked and more importantly, was a near perfect fit for Nate. This meant would be starting school with a new teacher and a new nurse. It was a rough transition. Imagine having to go to school for 6 hours with a person that you don’t know and don’t trust and yet has complete control over your life. 

First day of second grade
Nate’s nurse is his arms, his body, even his voice often times. It was nerve racking for him but he stuck with it. Nate has a reservoir of resilience and courage that is far beyond what I have. And this brings us back to the Transformers.

We drove down to L.A. last week to go to Universal Studios and Disneyland. Annie and I were excited for D-land but Nate was all about Universal studios for one reason, to meet 3 Transformers characters: Optimus Prime (good guy), Bumblebee (good guy) and Megatron (bad guy). 


It was quite probably the greatest moment of his life. One of the highlights was meeting Megatron, the villain of the franchise. 

The night before we drove down to Universal, I heard Nate talking to himself in the bath. At first I assumed he was just talking to dead people that only he could see but then realized that this wasn't the Sixth Sense. So I asked him what he was doing.  He told me he was practicing what he was going to say to Megatron when they met. The words were not kind. 

When the time came to meet Megatron at the park, Nate found himself much more intimidated than he expected. In person, Megatron looms large. He is loud, mean and evil looking. I drove Nate up to talk to him and it was obvious that Nate was nervous, even though he knows it's not real. And after a little back and forth between me and Nate, as I tried to keep him from backing up too far he was ready to stand up to Megatron. His voice was too quiet for Megatron to hear him so Nate said the line to the Universal employee who repeated it to Megatron.

 "Megatron, you have lost and the Autobots (read: the good guys) have won!"  Then he immediately backed up as fast as he could. 

Nate and I wrestled back and forth to gain control and I finally got him to stop trying to leave so we could get a picture. You can watch the interaction in the video below:




Although he did show some cowardice in the face of ultimate fictional evil, I was proud that my son picked to side with the good guys in their millennia old battle against evil....but he wasn't done yet. 

After we finished getting our picture with ultimate fictional evil, one of the employees told us he was going to take us to the gift shop next door so Nate could get a toy with an employee discount. It was incredibly nice and even though I vomited a little in my mouth at the idea of paying for over-priced gift shop items, this guy was sticking his neck out and being so kind, I couldn't say no. So off we went to buy a $15 toy that ended up costing us $23, after the 30% employee discount. ZOMG!

Nate ended up picking out an Optimus Prime toy (this should surprise no one).  He then announced that he wanted to go back to Megatron and rub it in his face that he purchased an Optimus Prime toy and NOT a Megatron toy. A bold move for a kid who was last seen backing away from Megatron.

Nate feeling the danger of putting your back to the enemy
I had no interest in waiting in line or disrupting the people currently in line, so I said we could just drive by so Megatron could see the toy as we passed by. That was not enough for this park employee who had become our temporary escort. As we began to pass by the character, this employee stopped us, pushed through the crowd and got Megatron's attention so Nate could show him the toy he bought. Nate reveled in the anger this evoked from the evil robot as he yelled that Nate should return it for a better toy, one of him.  

This was all delightful and hilarious, much more so than my poor re-telling of it.

Let's circle this back to the beginning though, that's something fancy writers do, right?

Nate is brave and resilient. When Annie asked him the night after Universal Studios why he kept trying to back away, his response was "Megatron is crazy. I was scared of him. I had no idea how he was going to react."  I laughed when I heard this but let's think about this for a minute.

Megatron is THE evil guy in his favorite TV show and Nate prepared to meet him by practicing a line of defiance. When the time came for this seven year old to meet an evil robot, Nate was genuinely scared, so scared that he thought he might actually get attacked by this guy.  And yet, he still mustered up the courage to tell him off. AND THEN went back for another round.

Nate will get new nurses he doesn't know, he will, at times, spend recesses and lunches alone, with no one to play with. He will be on the outside of music time and art time and P.E. and many other things.  Nate will find himself nervous, with no control and scared many, many times in his life but I am 100% sure that he will always find the courage to push forward and be ready for another round. 













Friday, August 18, 2017

Super Late Post About Summer!


Well, it's time for the semi-annual post. Some people say long form content is dead and that I should be Instagramming and tweeting you.  They may be right but our family motto is "often wrong, never in doubt" so I will continue to present you with paragraphs and pictures.

Last time on SMARDy Pants we were visiting Donner Lake. A lot has happened since then that we need to catch up on. Some highlights being Nate turning 7, which is completely nuts, and our recent trip to San Diego.



This is our second year taking a vacation to San Diego and we've learned a few things. Something we learned this trip is that while Nate says he does not want to go in the ocean, he will grin like the Joker the entire time he is in it.....right up until a wave hits the wrong way and he gets smacked in the face with an errant splash. Then he is done.



Something else Nate tried this year was boogie boarding. I set a boogie board on the shore just about at the point where the incoming waves could pick it up. Nate knelt down on it and I held him steady. Then we waited for the waves to come.

Every time a wave would lift up the board Nate would smile and get excited. As the wave would leave he would immediately announce he was done. We did this for a couple of minutes. Nathaniel has a lot of fears and anxieties that come with dealing with SMARD so it can be easy to think he's a scaredy cat.

But that would be false.

He has had to overcome more fears and anxieties at age 7 than most adults do their entire lives. For all his protestations, he never panicked or freaked out. His weak pleas to end the experience were more like formal complaints to appease his stubborn nature than to actually express fear or dissatisfaction.

And at the end of the trip, he told us boogie boarding was his favorite part.


Next up. We learned the Mormon Battalion visitors center and Old Town San Diego were a pretty good time. Nate got to fulfill two of his lifelong dreams: 1.  sitting in a stationary covered wagon and 2. looking up and to the left at nothing while the rest of the people in the picture look at the camera.



We also learned that both Nate and Annie can grow pretty great mustaches. You may note that Nate is once again looking off in the wrong direction. I suspect someone was about to assault the Wells Fargo coach and he was steeling himself for the upcoming shootout.

After all, you don't stand in front of a Wells Fargo coach in a cowboy hat and mustache unless you're preparing for a shootout. Look at that steely, he is ready to make some introductions to God.



And of course, it wouldn't be a trip to San Diego without Sea World. Last year Nate wheeled about the park with one goal in mind - see the Orca Whales. If weren't doing that, he was mostly ambivalent. This time, however, he was ready to see it all. And he did.


At Sea World, you pretty much have two options if you are in a wheelchair. See the show from the very top.....or from the very bottom. So, of course, we chose the very bottom, the splash zone.

The Splash Zone is the area where you can sit in a nice air conditioned room and watch the magic unravel between a charismatic Tom Hanks and his fish-out-of-water mermaid girlfriend, no I'm kidding. It's literally exactly what it sounds like. A zone where you WILL get splashed.

We figured it would be better to get a little wet then hike up to the top of the stadium. It wasn't until the sixth or seventh warning to the crowd that the splash zone isn't just a cute name and we will all walk out of the show so wet that we will never feel dry again, that we decided to hike up to the top of the stadium.


In the end, it didn't matter. Nate loved it all. I don't know that there is anything better than a child enjoying a family vacation.



Okay, still with me? Good. We're almost done. You don't want to close the blog now because Nate's favorite part is coming up.

The MIDWAY aircraft carrier.


Annie and I toured this ship on our honeymoon and I loved it. Annie was okay with it. We went on it again last year with Nate. I loved it, Annie and Nate were okay with it.

Nate insisted we go again this year so we did. I loved it, Nate loved it, Annie was slightly less okay with it.


Nate loved it all. He listened to the audio tour and didn't want to leave. He just sat at the front of the ship and stared at the ocean, convinced he had seen a shark fin.


Later that day he poured over the tour guide map and would read to us what the different rooms where.


It was a lot of fun. We all had a great time and we are very happy that we have the ability to get a boy, who is on 24/7 life support and has very little control over his own body, across the state and enjoying so many activities.

One of these days we'll have to tackle flying somewhere but...ho boy, figuring that out seems like a nightmare.