I.

Today was Micah’s first day of preschool.

In the excitement of the morning, and in the rush to get out the door, we forgot to put our new puppy Missy in her crate before we left.

There was an incident.
So she ended up getting an unplanned bath.

II.

Because we didn’t really know how much Micah would understand that he was soon to be going to school in the mornings, over the last couple days Sarah and I have been talking about it a lot with him.

When we got up this morning, I didn’t know if he’d remember or understand that he was soon going to be headed off to his new school.

He definitely remembered.

The first thing Micah does when he wakes up is to check to see if it is “blue” outside.

He is like an alarm clock. He almost always ways up at 6:15 am on the nose. And during this time of the year, it’s thankfully still dark outside. Micah knows that daddy and (especially) mommy don’t like to get out of bed when it’s still dark outside. So he asks for the iPad so that he can watch “George!” his favorite show on Netflix. I allow him to borrow it and watch an episode or so while Sarah and I try to catch a few more minutes of rest before the day starts.

And the day starts when Micah sees any hint of light outside, in which he announces “Blue! Blue! Blue!”and then “pot-tee, pot-tee, pot-tee!”

When we got to this part of the routine this morning I asked him if he knew what he was going to do today. And he pointed out the window and started saying “Bus!”

Unfortunately I had to tell him that he wasn’t going to ride the bus today, but that mommy and daddy would drive him to school today. (The bus won’t be arranged for another week or so.)

Micah showed that he understood, and he told me that he needed to eat and change his shirt. I think I must have mentioned something about wearing a different change of shirt to school before going there yesterday and that stuck in his head.

III.

Getting Micah ready for school was a bit surreal. It’s just so hard for me to come to grips with the fact that he’s finally able to go to preschool. It’s so amazing. Micah was definitely excited about going to school. But Sarah and I were much more so.

I was finally a parent taking those cheesy first day of school pictures. It felt kind of weird on January 15th, but nonetheless, I had Micah stand near the front door while I took the cliche pictures.

And I loved it.

IV.

Getting to the elementary school and seeing the long line of cars and minivans was kind of fun. It’s one of those things I’ve seen a million times on TV, but before the moment I pulled into the line of cars, I had never imagined myself doing that. It made me feel more adult. Hard to explain.

We walked Micah up to his classroom for his first day of school.

We signed him in. He walked right in with no hesitation. We watched him take the hand of one of his teachers and go over to his new cubby to drop off his backpack and his coat. Seeing that melted my heart in a way I was unprepared for. Just an overwhelming sense of pride and love. We’ve put so much effort, energy, and time into raising this boy and here he is – holding the hand of his new preschool teacher.

They started him on the routines of their morning, and Sarah and I ended up being a distraction and the teacher kindly said something along the lines of,

“Ok, mom and dad. I think it’s probably time for you to go bye-bye now!”

So we left. Without him.

V.

When we pulled into the driveway back home it was definitely strange. I asked Sarah, have we ever been home together without Micah?

Sarah’s eyes welled up a bit.

“No, we haven’t.”

VI.

I’ve generally been pretty good about taking pictures of our children. Trying to document things overall. I’m not the best with the more typical day to day stuff. When I look back on the pictures of the kids I’m amazed by what sticks in the memory and what doesn’t. There’s so much that we forget. They are constantly changing before our eyes, but it is so gradual it’s hard to notice it as it is happening.

Pictures are good, but audio and video capture so much more of a moment than a picture does. And I almost never take videos or record audio of things going on. I’m not really sure why. For one thing I am a snob when it comes to photography and video. I want things to look as nice as I can. And it’s really, really hard for me to get over that. I realize that every picture I take doesn’t need to be worthy of being published or put into a photo book. But I often still feel like I don’t want to take a picture if I know that it could be blurry or if the house is a mess or if the kids aren’t wearing something cute.

But then I miss out on life’s more normal, day-to-day moments.
The moments that are the easiest to slip out of my memory.

I don’t want to miss out on those moments. I want to be better at capturing them.

So I decided a few days ago that I wanted to be better about capturing audio and video of our daily lives. And that I want to take more pictures that represent the typical – the real – parts of our days. Messy house, missing pants, and all. When I go back and watch old videos that I have recorded they are more precious than gold to me. Invaluable. And I always ask myself why I don’t take more videos.

I don’t have a camcorder. I have my cameras which can all take video, but at varying qualities and with various limitations. For example, my nicer cameras can shoot some pretty great video, but I don’t have the option for autofocusing. I have to focusing things myself manually, and that can be a chore while recording video. My smaller more handheld type of camera does have autofocus, but it also doesn’t have the greatest quality video. Same with the iPhone 5S that I have.

So I picked up a camcorder from the store yesterday thinking it would encourage me to record video more often. When I got home and started playing around with it I realized the limitations of the camcorder and decided that it just wasn’t worth the money. I’ve decided to take it back.

If anyone happens to know of a good affordable camcorder that will give me a great picture, let me know. Otherwise I guess I’m just going to stick to my other cameras for now. But I do plan on recording more videos.

VII.

Ok. Back to reflecting on Kabuki Syndrome.

We are in day three of knowing that Micah has Kabuki Syndrome now. And I think it has sunk in a bit now. It’s more real now. This is our life. This will forever be a part of the reality of our family.

But personally, I think the concreteness of having a diagnosis has really done something for me. It feels like a huge weight has been lifted.

I realize only now that with Micah’s behavioral issues and delays that I have really felt really guilty over the last couple years. I always told myself that these issues weren’t really my fault, but I guess I didn’t believe myself.

I feel a great sense of freedom.
I feel that I can talk about Micah’s issues and delays now without a deeply rooted fear of being judged by other parents and grandparents. There are definitely reasons I didn’t feel safe talking about these things before (that I won’t get into here), but now I feel like I can talk more freely without being scolded or judged.

(There’s also issues of people pleasing and wanting to look good that I need to work on within myself, too. So don’t get me wrong, there either.)

But I don’t feel as vulnerable talking about things like the fact that Micah sleeps with me in bed every night. He starts out in his bed, and usually by 11:00 or so he has woken up and needs to be with me and/or Sarah in our bed for him to fall back to sleep.

People have strong opinions about this. I know our pediatrician does. He spent about 20 minutes telling us how to make it so Micah doesn’t sleep with us anymore. But honestly, that’s at the bottom of our concerns. If it doesn’t hurt him, then we’re not all that concerned.

But something we’re just now realizing is that kids with Kabuki Syndrome sometimes have sleep apnea, which could be what wakes him up and helps lead to many of the night terrors he has. We just don’t know at this point.

Another example is how Micah uses a pacifier even though he is three years old. We understand that kids can’t talk while sucking on a pacifier. But his speech issues are much greater than sucking on a pacifier. For Micah, a pacifier can completely change his mood. He can go from destructive and obstinate to peaceable and calm just by giving him a pacifier. I really understand where it gets its name.

But we also discovered that kids with Kabuki Syndrome have a strong desire for oral stimulation. And that is definitely true for Micah. He almost always wants to have something in his mouth to chew or suck on.

I believe parents know their own kids better than anyone else. If we take the time to learn what makes them tick, what makes them happy, what makes them frustrated – then we are the best people to make some of these decisions. Yes, being well informed from reputable sources is a good idea, but let parents make the decisions about their children unless it is hurting them or other people around them.

VIII.

One time after church when I went to go pick up Micah from the Sunday School there, the teacher told me that Micah needs to learn how to be more obedient. He kept wanting to go to the teacher’s desk in the room, which is obviously not allowed. And that I should teach him to be better at sharing with other kids because he kept taking toys away from some of the kids while they were playing.

My blood ran hot.
I was kind of in shock that someone would say things like that so directly to me.

No one ever really tells us anything negative about him. Maybe someone might say something along the lines of, “Micah is quite the explorer, isn’t he? He is a boy full of curiosity and energy!”

And I know what they mean. And they know I know what they mean.

But when this woman told me this, man, I was both very angry and sad. It really hurt. Not what I was expecting after a nice church service, that’s for sure.

But now that I have this diagnosis, how do I respond? I don’t want to use it as an excuse for bad behavior, but I also want his teachers to know that he has some genetic issues which may lend themselves to undesirable behaviors in a Sunday School classroom. He may not be like all the other kids there.

I sensed no empathy in that woman. None.

I also don’t want to guilt trip anyone by telling them that he has Kabuki Syndrome.

“Micah was disobedient today. You need to teach him how to be obedient.”

“Hey lady, my kid has a genetic syndrome which may inhibit his ability to be as well behaved as we’d all like him to be. Ok?”

That’s how I feel. That’s what I want to say. But I know it’s not appropriate.

I can pretty much guarantee that I’m not alone in feeling this way. In fact I’m sure that there are plenty of parents with kids that have special needs that could help me think through issues like these better than I am on my own.

X.

On Wednesday when I heard through a distorted speakerphone that Micah was being diagnosed with Kabuki Syndrome, I kind of chuckled to myself.

Kabuki Syndrome? Really? That’s what it’s called?! 

I knew it had to be of Japanese origin. And that was strange enough, but to call it Kabuki? Because of how he looks? That seems weird to me. It doesn’t really seem appropriate.

Due to the whirlwind of the diagnosis, I kind of tucked it in the back of my mind as being odd, and moved on.

But today as I was messaging with a friend he kind of called it out.

I have to say this, and I know you know this but I have to say this. I can’t just have us typing here about Kabuki like it’s a normal thing to do. We’re not doing that.

It’s messed up. Any time you name someone based on what they look like that’s insulting and insensitive. It’s no different than calling someone a Redskin. Oh, it’s not insulting, it’s just that’s what color their skin is. Yeah, you’re right. But it is insulting. It’s totally insulting.

You’re short. I’m gonna call you shortie! Insulting.

You’re pale. You’re…Casper! Nope.

You have a hunchback! Let’s call you the hunchback! That’s not what decent people do.

I couldn’t agree more. It’s not just about being politically correct. This isn’t being over-sensitive. It’s just not appropriate to name someone based on what they look like – and that includes genetic syndromes.

We briefly hypothesized what it would look like to sort of hijack the term and go edit the wikipedia article on it and things. But this is something I plan to really do some good thinking about and maybe come up with a solution. Because honestly, I simply don’t feel ok with continuing to call it Kabuki Syndrome – a name that comes from the dramatic facepaint of Japanese theater actors.

I know I’ve only known about this syndrome for something like 56 hours or so, but still, there has to be a better name.

As I continue to process what I think about the name, I’ll write about it. Maybe eventually I’ll write an entire post about it, with a detailed plan of how to hijack the name.