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:

I need socks for a project. Full length athletic, boot, or winter socks (I don’t need no-shows/low profile socks for this project). I will take used but prefer new. Please help. You can contact me or Crossroads Community Church – Yorktown, VA. Thanks!

I was hopeful and focused outward. I felt like I was doing God’s work, I felt like a plugged in and woke member of my community.

I’m sorry I’ve been whiny lately. Too much work stress not, enough grappling. Hopefully I can put a dent in my mat time deficit later at the Jiu-Jitsu Institute.

This was apparently back when I still believed work stress was bad, or even, like, a thing.

I’m a private person, so I don’t put my private business on facebook, but please pray for us today. We’re having a family emergency. We don’t need any material support, just prayers. A lot of them. Thank you.

I was concerned, but not yet totally changed as a person.

 

That moment when God says “Nah, homie” and rips up your to-do list

Selfish.,

Paloma, our 5 month old, had a seizure at about 7:05 am. We were in the ER for the next 10 hours. They did an EKG, EEG, CAT scan, and bloodwork. They said they think it’s an isolated incident, and there’s no cause for alarm. She’s fine, at home, and playing with her sisters. Mahalo for all your support.

This was a few weeks before hearing about Dravet Syndrome, and a few months until diagnosis. I was able to readily draw from a deep well or optimism and hope, which I feel now is gradually refilling.

This was before taking shifts to watch her sleep, before scouring the internet for info, before reassurances it was a fluke, perfectly normal. Before rectally administering valium, and a day of drug-paralyzed narcobaby moaning and wailing as she came down. Before sleep deprivation and missing work and “what the fuck, God?”

 

I’ve aged a great deal in the past few years. I feel I am a more present husband and father, most of the time.

I feel like I am less likely to let uncertaintity from living the life I want to live.

I have friends I know I can depend on.

And Paloma is doing very well.

I’m grateful for all this, and most days I can keep it together. However, there are days I wish I could stay on the couch, and start smoking again, or not think about having to be an adult.

I don’t have that luxury. I have to ranger up and keep moving. I’m not going to ignore my thoughts and feelings, but I don’t get to stop. I am here and fully alive, even when it sucks, and I wish Dravet Syndrome was a person I could murder.

I’m going to stay well. I have a wonderful family I have to be strong and available for, and I will not shirk those responsibilities, even though concern for Paloma has made me at times as flaky as a meth head, often cancelling plans at the last moment. I don’t even commit to things anymore if I can avoid it.

If I could say anything to myself when I was beginning this journey, it would be, really-don’t let them put her on phenobarbital, try to sleep more, and switch doctors ASAP.  Don’t focus too much on your career, and get ready to find out some of your ride-or-die homies ain’t really ’bout it when it gets complicated.

I have no regrets my actions or behavior. I wish Lil’ P didn’t have to suffer. I have learned a great deal and grown through this suffering, like iron heated in a forge, stripped of magnetic domains, and ready for shaping and more heat and quenching and polishing and finishing.

In fact, just last night, I had an odd feeling. I wasn’t tired or hungry or grumpy. I didn’t need anything. It took a little to realize I felt at peace. Not happy, or content or comfortable, really, but it was the first time I can remember being aware I was in a state of peace, that peace was something real I could experience.

Fuck epilepsy.

 

 

 

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