Real Tools Don't Talk.

Nate watching a new show called Handy Manny and then finding a big pile of scrap wood at grandma's house is a bad combination.  A couple of weeks back Nate discovered a show all about talking tools and building projects that lead to hilarity and moral lessons learned.  So imagine his pure joy when he discovered that grandma and grandpa had a recently torn up floor and plenty of spare wood.

 

Nate's plan:  build a secret hideout. 

 

It didn't take Nate very long to learn that building a fort wasn't as glamorous as that poser Handy Manny made it out to be.  Our tools didn't even talk once and the project mostly consisted of me cutting wood and Nate watching, wondering why his fort hadn't materialized yet.

 

It also didn't help that grandma's backyard was mysteriously transported to the surface of the sun that day.

 

A wheelchair makes for a great wheelbarrow replacement!

 I don't know if he was aiming for my fingers on purpose......

 

 

After an hour and half or so we had the wood cut and a frame made.  We haven't finished the walls or the roof yet but Nate has already spent some time in it.  And although Nate insisted we have a no girls allowed sign, he reassured us that it was only and affection and he would take it down any time any of his girl cousins were around.  

 

Nate's gotten to the age where he likes doing things for himself.  As you can imagine, that category is a little more limited than a kid who doesn't have SMARD but it's also a wonderful thing to see in him and we encourage it.

The other day at the park he was on top of a little structure that has shallow enough steps to allow him to clamber up them. Then suddenly, Nate was at the bottom of the slide.

 

The crazy kid climbed up to the top of the structure, turned himself around and pushed himself down.  He was so proud.  I love being his dad. Well, except from the hours of 1:00 AM - 4:00 AM last night.   Did not love it so much then.

Germs, Babies and Students

Nate likes talking to things.  Anything really but he has 3 particular favorites: his "class", babies and germs. 

 

Right now talking to germs is his thing, to the point where Annie and I have maybe lost a little bit of our minds over it.  In the Nate talking to germs stage play, Nate plays himself and Annie or I (read: Annie) is plays the role of the germs.  Nate will ask them how they are doing and Annie has to respond as if she is a germ or the germ collective. 

 

The key here is that Nate NEVER tires of this routine.  When Annie does tire of it then he will ask her to get out a bunch of his toys.  He'll divide his toys in two parts.  One part will be the germs and the other will be the white blood cells and he'll have them duke it out.  I only ever get worried when the germs win. 

 

The more normal thing he loves is babies or as Nate likes to say "I love babies infinity".

 

And he does.

 

I love babies too but now anytime I see one starting to breath fast and I automatically start thinking SMARD.  Probably not healthy but also probably not the most unhealthy thing I do. Nate will have conversations with his cousin James or Liam, only they aren't in the room.  Nate will, thankfully, play both himself and the baby parts in this scenario.  Which is equally disconcerting as the germ routine but less work for us so...whatever.  Observe Nate as he passes a Sunday afternoon away just staring at his baby cousin Liam.

 

 

 

Here Nate insisted Liam join him and his cousin Callie as they colored and read books.

 

Nate had another cousin, baby James visit from out of town.  Let me tell you, nothing, NOTHING, excited Nate more than the idea that he could put Liam and James on a blanket together and watch them chat it up.  He was tired of the artificial thing - he wanted real babies really talking to each other and almost burst with excitement at this idea.  Sadly, he was about equally disappointed when they were finally placed together on a blanket and all they did was throw up and poop themselves.  Babies, ugh, get it together. 

Nevertheless, Nate still loved and loves every minute of hanging out with his baby cousins.  How could you not, they're cute times infinity.

Here is Nate gleefully imitating baby James in some sort of one-sided Simon Says.

Nate, pleased as punch (or in his case beige nutrient rich slurry) as he holds James.

 

 

 

Graduated Preschool - Next Step College

It happened.  It finally happened, the beginning of the end.  Nate has finally become an adult or at least it feels like he will be sometime next week.  How is he growing so fast?  Nathaniel graduated from preschool last week. 

Nate starts kindergarten in 2 months.  2!  As in, less then 2 1/2 but more than 1 1/2.  How on Earth can someone so little be expected to go to school for 5-6 hours a day?  It's nuts.  But that's what's going to happen, despite my hunger strike.  While I am being a bit dramatic with the whole Nate growing up too fast thing, things are changing in a big way at the end of the summer. 


Nate will spend more time at school than with me.  We're going to have to leave him with a nurse we've never met and entrust her with Nate's life.   He's also getting older and bigger and simple things are going to get much harder.  This feels like the beginning of an uncharted phase.  I find this to be frightening, more frightening then The Ring even.  And The Ring scared me so much I had to put Newsies on a continuous loop for 3 days until I could sleep again.

Nate had a great time in preschool though.  His first year was a bit rough.  He had trouble with the noise and chaos and never really took to interacting much with other kids.  It's hard to do when you can only sit and watch.

Thankfully, this year Nate became really engaged and had a lot fun....sometimes too much fun.  He takes after his Dad in that he is nearly perfect except for the tragic flaw of always needing everyone to hear what he is saying and not caring one whit for the educational convention of raising one's hand before doing so. 

 
While Tiny Tots may have had a rough start it had the perfect ending.  Nate received his diploma, took it home and opened it up.  I don't know what he was supposed to receive but what he ended up getting was a piece of paper that said the name "Kurt" over and over again.

Nate loves practical jokes and thought this was hilarious. For someone who calls himself the master of mischief, it was the perfect diploma and a perfect end to preschool.

Getting Out

I'm going to let you all in on a secret.  Cabin fever can happen without even needing a cabin.  While Nate was sick we weren't able to leave the house much and with our apartment being small enough to make Thumbelina explode in claustrophobic rage, you can imagine how things were starting to feel for us.  

So we've been getting out as much as we can.  On top of Nate's list was the NASA Ames Research Center.  It had Nate so excited that he couldn't focus on any one thing.  We would roll him up to something he wanted to see and in seconds he would point his wrist over to something else and excitedly demand we go look at that now.

He loves the stars and space so I asked him if he wanted to be an astronomer.  He said no and told me what he wanted to be.  I asked him to tell me again.

 

However, just today he was saying he wanted to be a doctor.  A blood doctor specifically so that "if someone's CO2 is too high I can do a blood draw".  It's delightful and sobering that Nate knows about high CO2 levels and blood draws to test for that.

Over the last couple of weeks we:

Checked out the new handicap accessible park that just opened near us, Magical Bridge. As you might imagine, Nate loves it.  In the couple of weeks it's been open, Nate has been there at least 132 times.  The park is amazing and has so much more stuff for Nate to do and enjoy than a regular park.  The best part about it though, is probably how well it integrates the play between disabled and typical children.  It's a great park and a lot of fun.

He also found a new place to check out ducks, geese and Koi fish.  I don't think he loves seeing fish, ducks and geese but he loves seeing Annie's reaction to geese that get too friendly.  If you're wondering - her reaction is a mixture of terrified and spastic. 

Back to the farm near our house.  Any chance Nate gets, he chases peacocks.  It's been his thing for years.

His highlight this week was heading back to school.  He had to miss school for a month while he recovered but was so excited to get back.  The day went from 10 to 11 when the caterpillar cocoons the class had been tending finally opened up and a butterfly took its first flight right onto Nate. 

Nate felt like he was pretty important that day, maybe too important.  I should probably do something to knock that self esteem down a notch before he starts getting too uppity. For those of you who don't know please be aware that I am joking and not a terrible parent.  At least not on purpose.

The beach!  We have a love hate relationship with the beach.  Annie and I love it, Nate loves it but it hates us, so very much.  The beach is hard for us what with it being made of our mortal enemy, sand.  Thankfully, there are quite a few places around us that have nice pathways right on the beach that allow for Nate's wheelchair.  It's been a big hit so far and occasionally we'll unplug Nate and take him down to the water.  Exhausting but worth it. 

Can you find me and Nate?

Nate checking out the seals on Seal Rock through a 70-year-old telescope that cost us 50 cents. 

Beach near Half Moon Bay. Look at the face on Nate.  I want to say it's pure joy but it could also be him going over his plan for world domination.

I love going to the movies so my favorite day of the last few weeks was taking Nathaniel to his first movie.  I don't know if it's a SMARD thing or just Nate but he has some sensory issues and we'd put off taking him to the movies but he really wanted to go so we went.  He loved it. 

It's always great when Nate gets out and does something and gets that smile of pure excitement on his face.  It feels like a big win for us.  Now that he's seen Disney's Monkey Kingdom, next up, Furious 7.  Nate's a HUGE Vin Diesel fan.

 

Nate's First Pet

A quick update on Nate's health: We've been home for the hospital for two weeks now and life is slowly getting back to normal.  Nate still has extra junk in his chest that we have to manage, but overall it's much better.  The swelling and pain in his extremities has improved.  We've been getting out of the house a bit more.  Things are headed in the right direction.  The biggest challenge now will be helping Nate to regain all the strength he lost from being sedentary for nearly four weeks.  He is significantly weaker now and it will take some hard work to get him there, but we think he can do it.

 

Since Nate has had such a hard time of it lately we decided it was time for him to get his first (and only) pet.  Last week, while heading to physical therapy a lead bug landed on Nate's knee.  He was out of his mind excited about it and pleaded with Annie to contain it.  Annie grabbed a plastic container and they brought him home.  Nate named him Buggie and they were fast friends.

 

Now you may think I'm kidding in saying that this was Nate's pet but I'm really not.  Nathaniel would take Buggie out at least once a day and play with him.  He learned to gently pick him up by his wings and remove him from the container.  Then he would....play?....with him.   

 

 

He had a lot of fun.  Maybe even too much fun considering it was a leaf bug that just sat there.

 

Although still experiencing some pain we thought Nate was up to attending the annual Sweatin For Sammy fundraiser.  Every year Nate's cousin Sammy has a fundraiser 10k for her benefit and this year he LOVED it.  He was not happy at all that we had to leave. He was really excited to get back in his power chair and use it for the very first time in the kid's run.

 

At first I thought maybe it was kind of cheating for him to use his power chair in the race but then we kind of leaned into and ended putting spikes on his wheels, Ben Hur style.  The other kids didn't stand a chance!

 

Uncle Colin psyched Nate up for the run before hand.  And then he was off.  Be sure to note the pure joy on this kids face.

 

If you tunr your speakers up and pay close attention at about 00:21 seconds you can here Nate say "It's so exciting".  The idea of Nate getting an adrenaline rush from this kid's race tickles me to no end.

Despite obviously coming in last place (we were afraid of what might happen to other children if we let him turn his speed up) Nate declared himself the victor, "I won" he yelled at the finish line.  I told him he actually came in last but he was in no mood to believe me, especially considering he had just received a shiny medal upon completing the race.

 

Should we be concerned that he strokes it all day and calls it his precious?

 

 

And if you remember a post from a few weeks back you'll remember that Nate likes to bring one of his classmates with him to places.  He calls them field trips.  That's why Iron Man tagged along.

 

So congrats to Jenny and everyone who works on Sweatin for Sammy, it was our favorite year and Nate had a blast.

 

It's hard to say exactly what Nate's favorite part of the day was (actually it was clearly the race and winning a medal) but one of the contenders was the arm painting he received.  Normally Nate isn't interested in face painting since he doesn't like the sensation of it on his skin but he really wanted something painted on his arm from the face painters.

 

Nate being Nate, he wanted a blue goose on his arm.......?  He really liked his painted goose.  In fact this blog post could just as easily be called Nate's first TWO pets.  He even named it.  The goose's name is Pancake.  That's right, he chose a blue goose and named it Pancake.  I'm not sure who is raising this kid but there are clearly some red flags.

 

Happy Birthday Nate, Sorry Your Party Was So Lame.

On April 1st Nate turned 5!  It wasn't quite the day we were hoping for.  Nate picked up a cold at school and by day 5 things were pretty grim.  When Nathaniel gets sick, things get kind of crazy.  We have a machine that monitors his vitals and I cannot tell you how scary it is to put him to bed at night with his oxygen numbers dropping and his heart rate rising.  For days Annie and I were up all night (literally) and living with cold ice in our stomachs and what felt like an elephant on our chests.

Every 10 minutes or so we had to go into his room to clear out his trach, reposition him, trouble shoot some pain he had or just comfort him while he worked to breath. It's been relentless.

It scares me when Nate gets really sick.  He looks like he can barely breath and although we have a ton of experience dealing with things like this, we never know how much his little body can take.  I go to work wondering when I'll a get the call from Annie that she called 911.  On his birthday, things got really bad and Annie took him to the ER.  The next morning he was gasping for air (this just shouldn't happen to a ventilated kid) but we kept making adjustments to his vent settings and managed to get him comfortable again.

By Day 2 his lungs were expanding again after some significant collapse.  Thankfully, after 3 days, Nate was cleared to go home but coming home from the hospital is in many ways worse than being in the hospital.  He is still getting four breathing treatments a day and needs lots of suctioning, even a week later, and just isn't feeling great.

Nate has SMARD but because we live with it everyday, we forget how tenuous his hold on life is.  Nathaniel is on life support 24/7.  He lives on an edge and even a cold can do serious damage, or even kill him.  When he gets a bad cold - nights become stressful and sleepless and Annie and I always end up sick to boot.  By the end of even a mild cold we are exhausted, sick and our nerves are frayed.  In the hospital we at least know he's safe and have wonderful help that allows us to get more sleep than usual. 

In fact, Nate doesn't even mind the hospital after the doctors are done prodding him because he gets a parade of people coming in to play with him.  Plus, he was terrified of having his IV removed.  He would have stayed forever so long as we kept the IV in.  Seriously, I'm not evening making that up a little.  Observe:

Nate finally got around to celebrating his birthday and mostly enjoyed it.  He was excited about the decorations, the scavenger hunt and the "space" cake Annie made.  Unfortunately over the last 4 or 5 days he developed some sort of pain in his hands and feet.  Any time we move his arms or legs he cries out in pain and says his feet or hands hurt.  We can barely move him without it causing him a great deal of pain.  On top of this he's lost much of his strength.  He can't lift his arms up above his shoulder height anymore and he has trouble playing with his toys.  We don't know why it's happening. 

As issues pile on and sleepless night after sleepless night add up we feel like we're cracking. It's relentless and brutal on your morale and emotional state.  I honestly feel like at any moment I could just snap and start digging holes in the back yard laughing hysterically. 

So even though we're home and Nate isn't in immediate danger, we're back to sleepless nights as he suffers from these new pains in his limbs and continues to recover from this horrible virus. 

But he is delightful and honestly, the bravest person I know.  Captain America is a close second though.

Why am I writing a blog post about this?  We don't feel like victims.  We know we have some great things going for us but I think sometimes it's just good for others to know what it's like on the inside of a family with a disabled member.  We're exhausted and worried but we love Nathaniel.  We love Nate and we love him exactly as he is.  Nate having SMARD has changed our lives for the better.  As with all great things though, you have to earn it. 



 

 

We're happy to earn him.

Nate's Stuffed Class

Nate (I'm guessing like most 4/5 year olds) loves to question and learn.  He loves to learn so much that his favorite thing to do for weeks now has been to hold classes at home with his friends.  Meet Nate's class.

Nate holds class at least once a day, often times more.  He teaches them about the things he is learning about and interested in.  Sometimes it's about space, gravity, planets and such while other times it's about construction, dinosaurs or, his favorite, survival. 

Don't let the name of the course Survival fool you though.  It doesn't involved an infil into a lonely desert where Nate teaches the class how to survive on bugs and boiled urine.  Survival to Nate means how your body maintains itself.  He teaches them about your lungs, eyes, blood and waste system.  It's not uncommon for Nathaniel to need to go to the bathroom during class and announce to everyone, "Okay class, I'm going to get rid of my waste now", or something to that effect.

He'll often quiz them as well and makes sure they raise their hands first since he has a problem with that himself in preschool.  He asks them about the material and then he or Annie will come up with answers for them.

The following is a teaching moment Nate had with his class.

Nathaniel - "Okay class, what is your favorite sound?"

Bunny: "Crunching on a carrot."
Iron Man: "My favorite song."
Wolverine "My claws going into bad guys."

...We don't cross Nate anymore.

Sometimes he'll have Annie teach the class and he'll be a student as well.  Because what well adjusted 4 year-old doesn't want to hold school in their free time?

Today he had Annie teach and she popped the question;

"How do we know the Big Bang happened?"

Nate: "Astronomers have several clues, such as a faint echo in space and the fact that the universe is still expanding."

He also loves to take the class on field trips.  He gets to bring one member of his class with him when we leave the house.  Originally Nate was not content with one and wanted the whole class to come.  Since the beginning there has been a ban on taking the ENTIRE class on field trips and that never sat well with Nate so Annie to the above picture of his class and they always bring that with him. 

As they move through a store Nate will explain things to whichever class member is lucky enough to be riding shotgun. 

This all comes from 2 things.

1.  Nate LOVES to learn.  He loves facts and they stay with him. 

2. The way Nate plays is very different then other kids.  His uncle Chris once commented that something he loves about Nate is that he can be entertained with conversation. Because of SMARD Nate has developed different ways to interact with the world and found a deeper interest in learning and conversing.  Maybe he would have been that way regardless.  Who knows.

That's Nate holding an earthworm.  He likes to play "Bugclub" and go out in the backyard and look for bugs.  The other day he dug up a worm and then picked it up.  That's a big change in behavior for the kid that is so texture sensitive he used to freak out if he got dirt on his hands. 

Even though Nate cannot run through the grass and explore the hills, he is an adventurer at heart and loves to explore and learn in the ways that he can.  He is constantly trying new things, which is a big change from his attitude a year ago, and always looking to know how things around him work.

Oh yeah, Nate had wacky Wednesday at school a couple of weeks back so he wanted his hair crazy and a tie on.  We obliged and then took him to school.  Turns out it was Friday and Wacky Wednesday was, as you may have guessed, on the following Wednesday.  Nate didn't care, he loved his cool hair and wacky tie all the same.