I’ve always enjoyed coming up with chapter titles for various segments of my life.
When I was in seminary I worked part-time at the library on campus. During my first semester I worked a shift until we closed at midnight. And after a long day of classes and work, on the way home I’d realize that I was hungry. It wasn’t the kind of hunger that comes from not eating anything all day. It was more that I was often just really tired and my body processed that as hunger.
But there happened to be a Taco Bell just a few blocks away from my apartment on my way home and it was almost as if the car just drifted into the drive-thru to order that fourth meal. I’d order some food and pull around to the same cashier every week.
The name of that cashier?
I decided then that a good title for that chapter in my life would be “Tacos from Jesus.”
Soon after Sarah, Micah and I moved into the city of Chicago, Micah started walking, giving him access to everything in our apartment. He loved to scurry to the kitchen and play with the items in the pantry. Pots, pans, and cans would end up in random places all over the apartment.
One day as I went into the bathroom to take a shower I glanced into the tub and saw something out of the ordinary. I called out to Sarah.
“Honey? Why is there a bag of marshmallows in the tub?”
And thus another chapter title was birthed.
I’m not 100% sure what this chapter of my life will be titled yet. But after a chat with a friend today, I’m thinking it may “Kabuki Theater.”
Sarah and I are still processing through yesterday’s diagnosis of Micah. During breakfast today she and I talked about it for quite a while. There are definitely some significant differences between how she and I are working through the news. I feel more relief about this than she does. She said relief isn’t really something she is feeling right now. She’s more just…sad about it.
But not a sad like, “Oh woe is me!” kind of a sad. But a sadness that’s related to Micah’s future.
“He’s going to be picked on,” the geneticist warned us, “because of how he may look.”
I think those sorts of details are the kind that are nagging Sarah at the moment. I don’t want to speak too much for her, but that’s where she seems to be right now. And I understand that. And that’s ok.
She also told me how sad she was for Ezra. She wondered how he’ll feel about all this as they grow up together. Will he be embarrassed?
These are the kinds of thoughts I haven’t made it to yet.
Sarah thinks quickly into the future. I stay more focused on the present.
I am incredibly thankful for all those who took the time to read my post yesterday. It really means a lot. It is by far my most widely read piece to date. If I would have known that ahead of time, I probably would have given it another read through (or two) before hitting the ‘publish’ button.
But really. It does mean a lot that so many took the time to read through it. To comment about it on Facebook. To comment about it here. To text me. To message me privately.
I do plan to be writing and blogging a lot more this year. If you want to follow along you can subscribe to this blog. Just look to the left column of this page and you’ll see a place to sign up to recieve emails when I post a new entry. And if you are a WordPress.com user and you are signed in, you can click the follow button and read my posts in your Reader. You can also subscribe via RSS if you happen to use something like Feedly.
Or don’t. That’s totally fine, too.
But, really, thank you all.
Please don’t worry about saying the right thing to us. Or wording things just right. Honestly, at this moment, just knowing that people were willing to take the time to hear our story, to learn more about Micah and his genetic condition. That’s enough.
If you are the praying type of person, though, prayers are definitely appreciated.
Ok. So the big news for today is that we went to Micah’s new preschool to meet his preschool teacher and the therapists that will be working with him. We couldn’t be more excited for him to go to school and enjoy some structured learning time with therapists as well as other children.
The classroom is great. It has stations all over the room with all kinds of toys and activities to investigate and play with. Micah ran right to the kitchen section and started playing. (Ezra went over to the shelves of toys and methodically started pulling every toy down, scattering them across the room.)
As we started to go over the details of Micah, we were able to tell them that just yesterday we received the diagnosis of Kabuki Syndrome for Micah.
Now, we were told by the geneticist that we would have to explain what Kabuki Syndrome is to anyone we ever tell about it. He said he could pretty much guarantee us that no one will have heard of it before.
So we started to explain what Kabuki Syndrome is when the occupational therapist interrupted us politely and said that she knows what it is, and that in fact, she’s worked with three other kids that have had Kabuki Syndrome in the past. And another child that they thought might have had it, but ended up not having it after all.
Wow! What are the chances?
Probably similar to winning a $1.5 billion Powerball.
Micah is in a classroom with a total of 19 other kids.
Ten are kids who have developed normally and do not have any sort of disabilities.
Ten are kids who have not developed as expected and have various sorts of disabilities.
There is a preschool teacher that focuses on the ten with developmental issues.
There is a preschool teacher that focuses on the ten without developmental issues.
There is a speech therapist. There is an occupational therapist. And there may be other professionals that I didn’t meet today as well. I’m actually not quite sure.
Pretty amazing though. And all of this is provided to us without charge. It’s free. And to me, that’s the hardest part to grasp. This is such an incredible blessing that is being provided to our family. This will completely change our lives, and especially the life of Micah. Going to preschool and working and playing and learning in that structured environment is going to be so incredibly great for him.
He is totally going to thrive. No doubt in my mind.
And we set it up for him to start riding the bus as soon as possible. It takes a little while for them to get that established, maybe another seven to ten days or so, but eventually Micah will be eagerly waiting for the bus to come.And then he’ll get on the bus and ride off to school.
It’s hard for me to really even grasp right now. This is such a new chapter in our family’s life. When Micah is at school in the mornings, I’ll get to have one on one time with Ezra for a change. And then when Micah comes home, the three of us will have lunch and then Ezra will take his afternoon nap while Micah and I get one on one time together.
What a neat, neat thing. I think I’m ready for this chapter. I’m more than ready.
So here we are.
Kabuki Theater. Act one.