When life is busy I get to the point that I feel like I have to write or I’ll go insane. I doesn’t even have to be about anything substantial. I just need to put my fingers on the keys and let whatever needs to come out, come out.
So what’s on my mind? Let’s find out together.
The work Sarah and I do is a like a machine. There’s all sorts of moving parts. All of them need to be monitored and maintained for the machine to continue working properly. It doesn’t take much for the machine to break down.
Sarah has been sick since last Saturday. And over the weekend we were working with a new Family Teaching couple, training and helping them prepare to have a home of their own here in a couple weeks. That takes a lot of extra energy and attention. At the same time I was making sure Sarah is ok, while also making sure our boys aren’t destroying the house.
We have a different assistant working with us than we typically have. Which, it’s super great to have the help. It really is. But at the same time, we are definitely missing our normal assistant and how we just gel with her so well. It’s really a bummer that being an assistant is an entry-level position because we’d love to have her for a very long time. But she’s skilled enough that she won’t last too long with us.
I don’t want to seem like I’m complaining, so please don’t read it that way, but sometimes it feels like I’m juggling ten things at once. Despite the extremely hectic week we’ve had, we’ve stayed afloat. We’ve learned how to kick into this mode when one of us is down for the count. But it’s not sustainable.
Last summer we were without an assistant for the entire summer and I’m not sure how we did it, honestly. It was extremely hard. And this time without Sarah being able to contribute much has reminded me of the worst times of that period of our life at Boys Town.
Lifestyle changes – Micah
Last week we started Micah on a very restricted diet. It’s a modified Atkins diet in which he cannot have more than 10 grams of carbs each day. This is an extremely big shift from his typical diet. It has been suggested and approved by his dietician and nutritionist. There’s some exciting studies being done and about to be done regarding this sort of diet (keto) with mice that have Kabuki syndrome, which is what my oldest son Micah has.
The study of genetics right now is exploding. I wish the world knew just how much information we are getting and learning how to decipher these days in regards to epigenetics and genetics in general. It’s extremely specified studies with all sorts of amazing and promising results.
Micah just had his annual cardiology appointment and his genetic appointment. His artery is looking better. It was too large, but it is closer to the size it should be in one year, which is hopeful for the future.
The geneticist said she’d like to have Ezra tested, too. That he displays enough of the visual components of Kabuki syndrome that it seems very possible he would have it. In the end it would help the entire community to better understand the scope and spectrum of Kabuki syndrome and how it presents in various cases.
If he does have kabuki, then I think we’ll also have Sarah tested because she too has a number of the physical symptoms of the syndrome.
I can’t help but wonder what all this will look like in like 20 years. When they are in their 20s. What all will we know? How standard will these tests be? What will we know about what can change about our genetics?
Lifestyle changes – me
With Micah’s big diet shift, I too have made some changes to my diet. It’s something I’ve wanted to do for a long time, but just never had the motivation or dedication to make the shift. But I have made the shift. I’m committed in a way that I never have been and I’ve been very happy with my mindset and ability to maintain overall. My goal is to lose about 40 lbs. We’ll see how this journey goes. But I’m encouraged by my progress thus far.
Photography has been the main one I’ve had over the last few years or so. And I’ve really been trying to keep up with that lately. The culture in our home is finally to the place where the girls want me to take their photo, something I’ve wanted since we moved to Boys Town.
The other night we went on a quick photo walk right around sunset to take some nice portraits of them for putting up on our wall. They were so excited about it. Even the one girl who hates having her picture taken told me that she thinks that the photos turned out really well and that she likes the way she looks in them, which is a huge thing for her to say.
I recently picked up a boosted board. It’s a longboard powered by an electric motor. It was made famous by Casey Niestat on YouTube. It’s been extremely fun for me to ride around on. I use it to get around on campus and also at the various parks and bike paths around Omaha. I hope to use it more and more. I get an intense dopamine kick when I ride my board, and I find myself wanting to ride it all the time. Thankfully I haven’t had a big fall or anything. It can be pretty intense because it goes 22mph. I’ve only gone up to 20mph so far. I eventually will get confident enough to go faster.
I’ve been faithful with my weekly bike ride. It’s a ride called Taco Ride. I’ve been every week this summer that I’ve been in town. It’s a bit of a ritual for me now. Bike, get fried cheese curds, maybe some nachos, a couple pitchers of margarita, and then bike back.
I love it. I go with the best friend I have here at Boys Town, and we talk about work and then about life, and a bit more about work once a few drinks have settled in.
I’ve been enjoying myself thus far this summer for the most part. But it’s hard work. And it definitely makes me look forward to the school year starting up again. This is all the stuff I’m apparently wanting to talk about today. Honestly, this will just help me write a more thought-out post for my amseaman.com blog which has been long neglected by me. So thanks for anyone who followed along with this post. Hope you’re doing well. Blogging seems to be dying away. So I appreciate those who still have hung around.