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.


Sunday, March 12, 2017

SMARD Adventures at Donner Lake


"I really did do my dream!” was Nate’s exclamation as he sat in a sled in the snow this last week. A few months ago, Nate said to Annie, “I just don’t think I can have a happy life if I don’t ever get to see snow.” I’m not sure why this came up but it was around Christmas so I suspect Michael Buble’s dulcet exclamation to Let It Snow had something to do with it. Who can refuse the sweet picture that man paints with his voice? No one, that’s who.

[from left to right] Super model, adorable 6 year old, leering cave troll.  

With Nate’s new life ambition out in the open, Annie and I tried to see if it was possible. The proposition was doubly enticing since I LOVE being in the snow. Thanks to the wonderful generosity of some family friends, we had a cabin we could stay at in the mountains, so the only thing left to figure out was, could we get Nate there and how could we get him playing in the snow.


There are things we need to consider any time we go somewhere and we need to give special thought and research when it’s some place new. In this case, we had to consider the chance of getting snowed in longer than expected, the number of stairs we would have to deal with and whether we could get Nate IN the snow in a way that he could enjoy.


Turns out the real obstacle would be driving up to the cabin. The day before we wanted to leave, I-80 was completely shut down and we weren't sure conditions would allow us to get up there.  The next day however, the sun came out and the roads opened, a sure sign from Apollo that he approved of Nate’s greatest desire. Later that day we were in the snow and Nate was pronouncing that his dream of being in the snow had come true. And thus began Nate’s favorite family vacation ever.


We were particularly fascinated with the gigantic icicles. I made sure to stand directly underneath them as often as possible since this was the best way to get a cool, refreshing drop of water.

Of course the icicles were best used in the "Snow Cave of Doom" or as I call it, SCD, because who has time to write out Snow Cave of Doom more than once. Well, apparently I do. SCD was the capstone to Nate's sled run.


So much snow had fallen that the back porch was covered in a 1 - 2 feet of snow.  The porch was also large enough to allow us to dig a winding trench through it with a couple of bumps. This was Nate's sled track and it ended with the SCD. He only actually sled...er sledded...slod? rode his sled through the cave once. It ended with his head scraping the ceiling of the cave, him losing his beanie, and experiencing, for the first time, the sensation of having snow down in your shirt.

He loved it though. As we were building the track we would periodically test the ramp at the beginning. Before we started Nate would ask Annie to "document it". As if we were some test pilots trying something dangerous and new. After testing the ramp, he would always respond that it could be bigger.


Nate also loved just looking outside. Who could blame him.




Towards the end of our trip the whole lake froze over and then was covered in snow. There is a lake in there somewhere.


Nate loved to perch on the second story balcony, press his face against the railing and watch the snow.


Boy did it snow.



My highlight was when Annie, terrified of the cold and projecting her own fear of freezing, bundled Nate up in so many layers he couldn't move. It was a moment out of A Christmas Story.

He is wearing so many layers in this pic that when he laid down flat on the floor, his head fell back a couple of inches.



It was a lot of fun. Nate has declared to be his favorite vacation ever. Which is saying a lot considering how much he loved San Diego.  I'm glad we finally helped Nate to make his dream come true....until his next one. 


Tuesday, December 20, 2016

The Nate Way

"SNEAK WHAT!". This is the phrase Nate always asks me to shout when Nathaniel wants me to hide and give Annie a jump scare. Nate can’t hide behind corners and jump out and scare us so he’ll tell me or Annie to hide while the other is out of the room. When we jump out he wants us to shout Sneak What. His other favorite prank is to ask me to get him a glass of water. He then "whispers" to Annie (I can hear everything) and tells her to throw a plush toy on the floor for me to trip over. I of course, pretend to trip on my way back with the water, spilling it all over myself and Nate literally falls over laughing. 

Nate does things in his own way, he has to. Over the years Nate has adapted and learned to do things however he can. That doesn’t mean he’s figured out a way to everything, not by a long shot, but he finds a way to do many things.  One of the things he’s been figuring out the last few months is how to obey the rules of movement that most children start learning as soon as they start walking, something Nathaniel never did.

Nathaniel getting ready to make some candy cane cookies with his cousins. Although, by the look on his face, I think he may have more nefarious plans. 



This picture exists solely because sometimes I think Nate may be the most handsome 6 year old ever. I could be biased but I took an informal poll and Nate came out on top. However, the poll shows clear signs of Russian hacking so who knows. 

As I’ve mentioned in the past, Nathaniel has been taking his power wheel chair to school every day this year. He’s always used it here and there but now he uses it almost exclusively. He suddenly has a freedom of movement he’s never really experienced and it’s come with a steep learning curve. It’s made even steeper by the fact that he can do some serious damage if not paying attention.

It took Nate a little while to learn, for example, that it’s not cool to “sneak” out to the school parking lot for a quick drive around while his nurse is getting the bathroom ready for him. Or for him to leave class whenever he gets bored. Every kid has these urges but by the time they are 6 they’ve mostly learned the rules of the game. You don’t get up and walk out of class whenever you want. Nate’s never learned these rules since he’s never operated independently of an adult. It's all new to him. 

In many cases Nate does understand, but like all kids his age, they don't always pay attention to where they are going. Kids at this age suffer from a brain that isn't always connecting to their body. While this is normal, the consequences for Nate are much worse than just tripping or walking into another kid. It's a lot responsibility for a 6 year old.

The Lego exhibit we visit every Christmas season. It's small but fun. Also, we like to play the game, how many children can we avoid crushing under Nate's chair as we navigate through 3 foot wide corridors packed with 1,000 kids. If the number is more than zero, you lose. 

Thankfully, Nate’s up for the task and has really stepped up and gotten things under control. Although there have been a few speed bumps; like the time he ran into a pole so hard he broke his foot pedal and loosened the seat screws in his chair, or when forgot to speed down while going through a door and, I kid you not, broke the door.

He also has a strong mischievous streak. It makes it near impossible for him to NOT pretend he can’t hear his nurse calling for him to come back as he continues to drive away. For some kids, this may be them trying to get away with something. For Nate, it's all just a hilarious prank as he continues driving with a giant grin on his face. 

This is Nate thinking it's HILARIOUS that I tried to change his pants while he was in his wheelchair. Long story....well not really but it highlights my failings as a parent so I'm not going to tell you. That leaves the near perfect image you all have of me firmly in tact. 


It's been years since we've had to tie a Christmas Tree to the top of a car. Thank you van!












Sunday, October 23, 2016

Nate's Superultimate Trailer

Has it really been a month since the last post?! How does that even happen. Where is time going? I suspect there is a Doctor Who joke somewhere in there but I wouldn't know since I never watch the show. If YOU watch the show, pretend I just made a good Doctor Who joke.

Speaking of shows, Nate continues to love two things, Pokémon and iMovie. Most recently he discovered the "trailer" section of iMovie and he put something real special like together for you.

It's been a rough year so far with Nate suffering so much loss of strength, his ulcerative colitis, GBBO moving to Channel 4 and of course the US election being renamed Thunderdome. So it makes me happy when Nate finds things that he enjoys, whether it be Pokémon, 1st Grade or iMovie.

The great thing about iMovie is that Nate can do much of it himself. He'll spend hours adding in sounds and titles and videos. The only thing he can't do is film any of the shots. It's great to see him using his hands and imagination.

Thankfully, because of Pokémon and now iMovie, he has started using his hands and arms more and his imagination has been in overdrive. Example:



Also, we got Nate's school picture this week. This was the conversation I had with him before the photo:

Me: There are a lot of people watching
Nate: Yeah
Me: Well, just smile natural...but don't look like you're smiling natural
Nate: What does that mean?
Me: I don't know, smile casual.
Nate: Uh, okay.

This was the result:


Sunday, September 25, 2016

Nate's Corner


Nate likes making videos. Usually they are of the comedic variety. They're usually really long videos of the carpet though, since Nate things it's super hilarious to film nothing for 10 minutes. I thought I would funnel his passion for video into something to make the blog more entertaining than I could ever make it.

The focus of this video are the Pokemon gym badges Nate has been earning. Nate LOVES Pokemon. He watches, plays, sings, talks about or researches it nearly all the time. The major themes of the TV show, from my limited understanding, are working hard to achieve things and dealing with failure. This suits Nate's attitude perfectly.

In the show, the main character earns badges by conquering various opponents and obstacles. We've lived with Nate for over 6 years now and we're starting to figure this kid out (at least until he hits puberty). So, we went to Amazon.com and found a little box like the one the main character carries in the show and in it were 8 badges from the show. Annie and I came up with 8 different challenges for Nate that would push him on things he didn't want to do or was having trouble with. Once he completed the challenge, he would earn the corresponding badge, just like in the show.

I couldn't have imagined a better response. Here's Nate after earning one of the badges:


So far he has completed the first 4 challenges.

1. Memorize the first 6 Articles of Faith.
2. Read 3 60-page books all on his own.
3. Behave himself and sing as many lyrics as he could in today's Primary Program
4. Scoot 24 feet on his scooter board in under 55 seconds.

The last one was the hardest and the one Nate was the most proud. And I have never been more proud of Nate. He worked really hard and was determined to get those badges. The scooter board was the toughest.

His arms remain very weak compared to what they used to be. He barely scoots anymore on his board, something he used to do with ease. I suspected he could gain a little more strength back but he never had any motivation. He worked on it for about two weeks until he finally crushed the 55 second goal at by 9 seconds.

I wish I had recorded the actual event. It was great to see him working so hard. I'm pretty sure Nate beating the 55 second goal was the inspiration for St Elmo's Fire by John Parr.

Anyway, Nate wanted to give his thoughts on the badges and his new favorite thing to play at recess. Oh and sing a couple of the Pokemon theme songs.




Yep, dodgeball. Nate loves to play dodgeball. The version they play is a little different. The aim for a cone instead of other children and the defenders have to use their bodies to block the goal. But as Nate always points out, no puppy guarding!

As you can imagine, Nate in his big power chair is always a sought after player.


Sunday, August 21, 2016

Something in the blood

The Olympics officially ended today and apparently I won the Bronze medal in the marathon.



There's something about the two weeks during the Olympics that gets into the blood of the Green family. It caused me to start a 5 year Junior Olympic stint in Gymnastics. It caused my oldest brother to host an impromptu Olympics in our grandparents backyard that ended in a rather fantastic magic trick: turning one of his femur bones into two. And now it seems like it's gotten into Nate as well.

After watching volleyball he wanted me and Annie to setup a volleyball court on our rug so he could play. For a kid who can barely lift the weight of his own arms, it was an ambitious idea. But we all loved the idea so Annie came up with a way for them to play. It's rug Volleyball and Nate was the best player in the competition.


He also made his toys compete in various Olympic events and set up a shooting event between me, him and Annie with a Nerf gun and some toys.

Ever since Nate lost the majority of his arm strength back in May, he's defaulted to avoiding anything physical, including playing with toys. It's been a bit heart breaking, so seeing him want to get back into physical activity has been fantastic.

And for those of you who don't know what the Olympics are and also want to know what Nate's favorite events are, you are in luck!


Nate also started first grade this last week. As always, we took a first day of school pic:




I didn't take this picture and I wasn't there so I refuse to be held responsible for whatever he is doing in it. Last year at this time we were nervous about Nate starting kindergarten. We didn't know how he would handle hours of sitting in school, how we would make it work, if/when we would have a nurse, who would the nurse be, etc...

Turns out while school wasn't a disaster, Nate shared my approach to schooling, dying for it to be over. Even on my worst days at work I still think to myself, at least I'm not in school.

Having SMARD added to his difficulties with school but I don't that was all of it. Thankfully, this year has started MUCH better. 

In fact he was very excited the first day.  Some might say, too excited. 


After a few outbursts like the one in the video Nate tried to calm himself down, saying to Annie:

Nate: Okay Nate, calm down.
Annie: It's okay to be excited, Nate.
Nate: I just don't want to disturb my classmates. 

This year has had a very different start. Nate already has a great nurse that he knows and trusts, he has most of his school equipment squared away, and he has started taking his power chair to school. A big difference for Nate. 

While Nate still doesn't love school, and likely never will he doesn't hate it and even enjoys parts of it this year. Here's hoping!