special needs parenting

The End

Our memories are mostly memories of memories. We can trust the big ideas. The details are more suspect.

We pave over the particulars of our past with things from other events or things other people have told us about their experiences of the same event. It’s one of the reasons, besides the fact that people are fantastical liars, that we get caught telling tales so often.

Our past exists in a Gordian Knot of stored data in a biological wet organ just big enough to grow inside our skull. And so over time, all that’s left is the general idea of something that once happened to us. And even then only if we all agree on what that idea was and write it down. So that’s what I’m about to do, lest I forget this one and it vanishes like Roy Batty’s teardrops in rain.

Trust the big idea of this one. The details are post script constructs.

Ten years ago this week, I sat staring at a clip board at my desk in my troop space. On it was a long list of things that needed to get done.

Weapons inventories. Manifest check sheet. Will. Power of Attorney. Classified hard drive storage.

There was a line through each of them already.

The phone in the middle of the desk I shared with my Troop Master Chief rang. He picked it up, muttered a something inaudible and hung up. Then he looked at me. Of all the things I remember that day, it was the look.

We were due over at the North Island Naval Air station with the rest of my troop to get onto a C17 headed for Balad, Iraq in about an hour. But something had happened and we had to head over to the meeting room in SEAL Team ONE. And that something could really only be one thing.

Dan Cnossen, one of the Team’s platoon commanders, was injured in Afghanistan. He was a part of the team that had left the week before with some of my operators and analysts. I knew Dan a bit. Not that well. He lost both legs but survived.

We were about to say goodbye to our families on the tarmac, but the Skipper wanted us to know what happened to Dan. And to remind us that no one says nothing to no one. There was a process underway to let those who need to know, know.

This was the work.

As for Dan, he’s since gone to grad school at Harvard and won two Para-Olympic Gold Medals in the Bi-athlon. It’s true what Ruth said about people you know. If they never quit, they’re damn hard to beat. And there’s clearly no quit in Dan.

I left my wife and three kids on the Tarmac that day. It was the last time I would see my middle son before he was diagnosed with Autism. It was the last time I would see my youngest before he could walk. I slept on top of a conex box in a sleeping bag for the next 15 hours or so before we landed in Iraq.

I felt as bad as I’ve ever felt in my life. For a few minutes and then I buried it.

Those are the details of the day.

The big idea was that it was the end. Whatever I had built myself to be able to do, was done. All that was left was six months to play the game I’d spent the previous 15 years preparing for. And while many, maybe even most of my generation will tell you that the most important time in their lives was when they served, I won’t.

Because the most important time in my life was the ten years since I stopped.

None of us, no matter who we are, can fight forever. And few of us can find a market that fills up our lives talking about what it took to fight. The rest of us need to move on.

I put my family back together. I put myself back together. I found that kid that raised his right hand on the courtyard in Annapolis 20 years earlier who saw that world through bright eyes. Who hadn’t yet buried a lifetime of pain in the desert. Who hadn’t yet clung to countless unsustainable life hacks to numb the pain.

I founded a non-profit with my wife to help families with special needs.

I found a career in an industry that let me build on the experience I had but insisted I grow beyond it.

I found my voice in writing; a few million visits to this site, articles in the Washington Post, Playboy and a dozen other online venues.

I found faith. And in it, I found the strength to walk the next leg of the journey; the journey of a special needs father.

This blog is winding down. I’ve said most of what I need to say about politics in America. It’s not going anywhere. If I need to, I’ll say something here from time to time. But there’s work to be done. There are men out there on the same journey I’m on, in pain. Men who don’t know how to be who they are through the grinding task of special needs parenting.

It’s an unfair task. But I think I can help.

This September I’m launching a blog to provide some words of encouragement, hard lessons learned and a little salt and light to the fathers of special needs children. I know they won’t ask for help. I know they won’t tell people they’re hurting. I don’t need them to. I’ve been there.

And I’m coming to them.

Thank you all so much for the years of following this blog. You are all the reason I wrote. I hope it helped.

And if you’d like to follow my new page, I’ll send one last post with the info when we get it out.

On the Utility of Faith

For those of you who don’t follow the majesty that is @sphughes99 on Twitter…this sort of stuff pops out from time to time…

Thread on the utility of faith.

Most of the intellectual energy around faith and people of faith is focused on the institutions of faith. And it’s pretty negative. Rightly so as the institutions are riddled with bigotry, abuse and hypocrisy. So little else gets said.

Beyond that though, it’s hard to overstate the positive impact faith has on people on a personal level. That people endure the negativity of institutions to organize around their faith is telling.

For me, faith is foundational. And it’s worth unpacking the mechanics of that a bit.

I’m a parent and caretaker of of a special needs child. The grind that involves is consuming. I write this, not coincidentally, at four in the morning, the time he decided to get up today. I’m up with him because he’s not entirely safe without some supervision. He’s 12.

Hence some reflection on the utility of faith.

The grind of this life is consuming. And like all grindingly tough things, hard things with the added aspect of having no end in sight, the notion of unfairness plays a central role in the battle for your state of mind.

What my family lives through is unfair. It’s unfair to my child. It’s unfair to my family. It’s unfair to me. Over time, focus on that unfairness turns healthy & honest sadness to bitterness. It’s not unique to special needs parenting. It’s a common cycle because life is hard.

Special needs parenting is just a certain type of hard that makes for an acute illustration. There is difficulty. And there is no way out of it. And there is no end in sight. No end until the end.

In such instances, faith and it’s central role is clear.

I asked BJ Miller of Zen Hospice about the advice he gave to the caretakers of long terminally ill loved ones. It occurred to me that much of the emotional pattern I was experiencing with my son was similar to what my family went through with my mother’s 3 yr battle with ALS.

He told me that one of the central enablers of sustainment for caretakers was the ability to see themselves in the suffering and need of others. And to see themselves in the care they gave. It’s an intentional frame of mind. And without it, fatigue eventually yields resentment.

And resentment yields the bitterness. And so the critical shift is to move yourself out of the center of the problem, the unfairness of it all, and into the care being provided.

It’s easier said than done. The amount of times I’ve patiently whispered “quiet voice” to my son since 4 this morning so he didn’t wake up the rest of the house, eventually starts to draw on me. And so there’s some energy I have to put into seeing myself as an expression of the care I’m giving. In my experience, that energy is best focused on faith.

The central message of my faith as a Christian is simply put, to put God at the center of your life. And that the application of doing that is through loving others.

I’ll pause for a second to acknowledge: So many churches are horrible. And so many Christians hare horrible.

And so much bad has been done in the name of religion that the hypocrisy on an institutional level is bad enough to turn anyone away. Try, if you can put it aside. Because one of the great tragedies of that horribleness is that it blocks people from their faith.

But if we can put that aside and focus on that message of service & love & the underlying messages of grace, it takes us back to the critical utility of my faith. The world needs me to see myself in the care I take of others. The application of my faith reenforces that message

It reenforces a message that I am not at the center of my world. And that this world is unfair and cruel and fallen. But mine is not to spend much time on what that means to me. But instead to serve and to give and to love. And in that service and love, is where I find myself.

And finding a community of people who believe similarly and fill my days with encouragement and reminders of the message makes it easier. Saying out loud what we believe, together, makes it easier. It keeps the wolves of bitterness and self outside the camp.We’re wired for it.

And I know that there’s plenty of smart people who think my belief in God is a silly superstition that is at odds with my analytical Bayesian views of the world. I simply don’t know how to get through the day without it though.

I came to this belief through exhaustion and surrender. And it has changed my life to look the only way it can to survive. Therein lies the utility of my faith.

And now, it’s 630. And it’s time to start today. And this small version of outward expression of faith an 18 tweet prayer thread if you will, has helped. Enjoy your day everyone.

If you know anyone struggling to keep up on the journey of special needs parenting, tell them to check out what we do at Care For Us. It’s all free. And we’re always here.