Shared publicly  - 
A quick Addison / Life update for those interested and following along at home.

I've been meaning to make a bigger blog post - but time seems to escape me at every turn. Aside from well, being a parent (priority #1) - Nasuni just released the thing we've been working on for some time (Multi-Site access - - a global, secure, single name space NAS with built in data migration, intelligent caching? Sign. Me. Up. Of course, hot on the heels of that, we've still got some pretty awesome stuff coming up, so that's priority #2.

And of course, PyCon - which is somewhere between priority #1 and #2. PyCon 2012 is going to be amazing. We're in the throes of talk reviews on a mass scale, and between the amazing proposals, sponsors, keynotes - I'm floored. This means time? What time? Heck, I'm stealing time at 5:30am to write this - luckily I've been working out (weight lifting, yoga, and now training for a 5k), and eating right (Paleo for the win) to keep things going.

Aside from all that - a lot of friends have reached out to ask me how Addison and the family is doing. The good news is this - weird is the new normal. After several months of hell, depression and getting quite cross with doctors, we've reached the plateau of "hurry up and wait".

Addison's diagnosis - if you want to call it that - is Cerebral Palsy - Hypertonia ( This means that she does have a disorder, but it's not one treated with drugs - just physical therapy and frequent checkups. We have a nurse and a physical therapist who come weekly and check on her thanks to early intervention. She's developing well - she's eating baby food, smiling and generally being a normal baby. All we have to do is keep up with the therapy and in theory her brain will "auto correct" as time goes on. She's 17lbs and counting at just about 5 months and just giving hints of crawling.

In addition to the hypertonia, she was diagnosed with non epileptic seizures - again, not something we can do much about other than to love her, keep up with checkups and wait.

So that's where we are - we have a happy, cooing, laughing, happy baby and just have to keep a close eye on her and work through things that come up. It's too early to tell if her problems will have long term consequences. The doctors all hope that she's "error correct" around these things and she'll be OK. But we won't know until we see her development at 6 months, 9 months and 1 year - we still have that "threat" that something could happen - her brain could stop developing, or conditions could get worse.

But its hard to think about that - because I don't see the problems - every day, I pick up and hold and play with a beautiful, cheerful baby who wants nothing more than to chew on my fingers (she's teething) and laugh. I don't think about the future much, because it's unknowable, and we'll cross that bridge when it comes. Sometimes it pops into my head - that worry, that doubt, and I push it to the side and think of what we've already gone through.


As I said in that post: "Because I know as a parent and as a human, it is my job to get up every day and do the impossible. It is my job as a parent to raise the best children — not perfect children — the best children that I can and do right by them. It is my job to teach them, to love them and do everything in my power to either heal them or help them cope with whatever may be wrong. It is hard, but it is not impossible — but the impossible is our job."

Abby is a rough-and-tumbling 4 years old now, and happily flourishing at school - she's so smart is scares me sometimes. My goal, since becoming a parent is to give them the things I couldn't, or didn't have - and to make them better people than I am. Smarter, Kinder, Gentler. All I can do is that, and work in my own way to make the world a better place for them bit by bit. I look at them and I feel age creeping up on me.

In other news, Abby, Addison and I were all baptized this past sunday - the girls were beautiful and everything was fantastic. We were surrounded by family and friends and I could not have asked for more.

So, as they say - "The Dude Maintains". Though I am definitely thinking about rocking the suit (see the pictures) at PyCon :)
Kumar McMillan's profile photoJesse Noller's profile photoBrett Cannon's profile photoDavid Eyk's profile photo
Glad you are doing OK!

Hmm. "Multi-site access is an exciting new capability from Nasuni. Watch Nasuni CEO, Andres Rodriguez explain how multi-site access expands upon Nasuni's Data Continuity Services. " That triggered my buzzword filter, and that site is now inaccessible to my brain. You are welcome to explain what it is, something who ever wrote that text clearly is incapable of. ;-)
+Lennart Regebro Our product allows you to stand up one of our Filers - that includes encryption - under you control - with built in filesystem level snapshots, de-duplication, compression, a dead sexy UI (I'm biased, I'm the lead on it) and unlimited storage in any series of geo locations (think offices all over the world) and have a single, shared volume (drive). This means a single namespace network attached storage device that's completely secure/encrypted where your data is available to all of your business locations. For example, you could have sites in belgium, australia, new york and japan and they would all be writing to the same global filesystem.

It's pretty killer from a business point of view - you can have a hardware device, or a virtual device, and they all act the same, have the same features and allow instantaneous disaster recovery (you can nuke a hardware Filer, and bring up a virtual machine replacement that has access to your global data in *minutes*).
your girls are so lucky to have a father like you. one day they will read your post and proudly say, "Yes, our dad is the best!" good luck with everything! your kids are adorable and very beautiful.
+Jesse Noller OK, yeah, that's really useful. I know Novell did something like that with Netware 4, we had a customer that used that, it was pretty damn neat.
+Lennart Regebro in our case, it's the equivalent of standing up a normally hyper expensive NAS ala netapp, and having built in global access, backups, restores, versioning, and instantaneous recovery and access from all over the world.
Yay for early intervention :) It can be scary, and you do a LOT more waiting, but I credit it for Jake being mainstreamed today.
Thanks for sharing Jesse. I'm glad things are going well, and you are enjoying your family.
I was wondering what was going on over there, but did not want to pester you. Thanks for taking time to let us know!
You have the Zen. You are living in the moment and that's the best place to be because the present moment is the most tangible thing we have on earth. Nice work. Thanks for the update.
You definitely need to bust out the suit at PyCon.
Glad to hear about Addison. The brain is an amazing thing--auto-correction?! I'll continue to pray for you guys. Congratulations on your baptism--I believe I get to call you "brother" now.
Add a comment...