A ripple in a wall

libro

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El impacto de un libro AKA El castillo, Jorge Méndez Blake, 2007

I saw pictures of this installation by Mexican artist Jorge Mendez Blake, and it got me thinking about the power of ideas, about memes, about the transmission of culture. It reminded me ideas, their propagation and sharing, can impact our world, not just as gentle eddies in a pond, but in disrupting brick walls of institution, custom, and identity.

I haven’t mentioned it much on this blog, because at this point most of my readers are people I know in real life, and are already up on it. Yesterday, the paper ran a story on us.  Today is pivotal for medical marijuana legislation in Utah. My wife has been going to the Capitol, lobbying, meeting with representatives and senators, and engaging the media. I’m proud of the work she’s done, and I wish I were more involved.

Well, today is also my first job interview as I transition out of the military.

I’m anxious; and it’s mostly in a good way. It’s an energizing fire. This moment is a culmination of 3a.m. conversations, dreams, thinking out loud in hospital rooms, early morning driving to work long before the Sun rises anxieties, of pros and cons lists, of planning, of wishes, of phone calls, and emails. All of those things have the potential  to cause physical ripples and eddies and displaced bricks today.

Mazel Tov.

 

 

 

 

Two years

Facebook reminded me it’s the 2nd anniversary of meeting that a-hole monster, Dravet Syndrome. Here are some of my posts from that day:

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Careful

I accidentally overdosed the baby with one of her meds. She’s fine, it just had a sedative effect, but I feel awful.

Getting medicine ready requires concentration, with this one I was supposed to grind up a tablet and mix it with 5ml of water, then administer 4ml of that suspension orally via syringe. I was distracted, putting another kid on time out, so I mixed the powder with 4ml water, and gave all 4ml, which means it was 250mg instead of 200mg.

Hypervigilance-having to be on point all the time is exhausting. Sleeping lightly because seizure monitors go off all night when baby is turning over or reaching for her pacifier is exhausting. Not being able to have a sitter, because normal people without medical experience can’t watch Paloma, is exhausting.

I’m not complaining, simply stating facts. This is my adventure, and I embrace it. Some days are tougher than others, and those tough days can be linked together like a horrid train. But, today, as Paloma takes an early nap as a result of being drugged, I can draw a breath. I can be in this moment, resolve to  never let it happen again, and celebrate the good.

An old friend visited with their wonderful baby, who I got to wrestle with and love on. It was a nice visit, and great to still feel connected despite not seeing each other for 8 years. It was odd but satisfying to see they had grown not only into being fully an adult, but a wife and mother.

Paloma just finished her wean off phenobarbital, which is an awful drug, sometimess taken recreationally for its psychoactive properties. We started the wean in June. At first, we were going too aggressive, at the advice of her Doc. We saw an increase in seizure activity as a result of the wean. Its counterintuitive that a side effect of a seizure med is seizures, but the human brain is a complex, marvelous thing, and isn’t fully understood.

I can control what I can control, and more than anything, I can control how I react. As a warrior, I am not privileged to have obstacles or opportunities. Those are reserved for normal people. I have challenges, and whether they are good or bad is relative; they simply are.

I will focus on the good. I take responsibility, but I will not dwell in my error. I choose joy.