11. Joy

By the time I was 32 years old, I’d spent four years behind the walls at Annapolis, completed three tours in a war zone, moved a dozen times, finished business school, cared for my mother who was dying of ALS and had three children with my wife in three and a half years. I felt like I’d been ground to the nub. And I was ready for the part of life that was supposed to be fun. That’s when my son was diagnosed. Tolstoy was right about families. The happy ones may all be the same. But the unhappy ones are unhappy in their own way.

My family wasn’t unhappy because of any of the laundry list of hard things we’d gone through. My wife was too strong to let it beat her. And my kids were kids; inherently happy. My family was unhappy for a much simpler reason. I was in it. I really only knew one way to get through hard things. I put my head down, grit my teeth and gutted it out. I told myself that one day we’d get through this. That the train would pull into the station. And all would be well. Until then though, I was going to be a miserable son of a bitch. And that’s just the way it was going to be.

I didn’t realize one of the great iron truths about life. There is no station. Just tracks; tracks as far as you’ll ever see. The cold reality of my son’s diagnosis and the increasingly clear and permanent burden of special needs parenting actually helped a bit. My son’s diagnosis destroyed the idea of a station. I had no choice but to come to terms with the uncomfortable truth that that we would never pull in. And that this may never get easy. With that truth came a reckoning. And a lesson about the nature of joy.

For most of my life, I’d mistaken a few things. I thought relaxation came from easy things. I thought peace came from quiet. And I confused joy for fun. With a lot of patience from a wife that never quit on me, friends who knew better from their own hard walks and the towering strength of faith, I learned a few things:

Peace comes from knowing God, or whatever version of higher power applies. Relaxation comes from aligning your internal expectations with your external realities. And joy comes from purpose. For me, that purpose was serving my family. Once you make your peace with all that, you’re pretty hard to beat.

One of the great regrets that I have is what I missed during the years when I faced the hard things in life by keeping my head down and my powder dry. The birth of my kids. The joy seeing my wife for the first time in months. The beauty of the simple things in life. I’ll never get any of it back. So do yourself a favor and start where I ended. I’ve learned the lesson for you. And you get no points for rework.

14. Time

In any enterprise, there’s at least one singular scarce resource; that one thing on which all depends but is limited in its availability. Successful enterprises identify that scarce resource and manage it effectively. Sometimes understanding which resource it is, isn’t obvious. Money problems are often time problems in disguise. Time problems are often lurking talent gaps.

Groups that fail to recognize what their true scarcity is fail spectacularly in ways that often puzzle those responsible for their success as they invest more and more in things that don’t matter and fail to protect that which is critical and can’t be replaced. In special needs parenting, that resource is time. Nothing else is close. It may feel like we don’t have the money or support or the expertise to do what we need to do to get through the day. And all of that may be true. But all of those things can be gained or replaced. What cannot be accounted for with any measure is that we don’t have enough time.

As a mission commander in special operations, the one thing that never really wandered too far from my situational awareness was time. There were always the variables of danger, enemy and friendly forces, communications, food, water, ammunition and a near endless list of other things we needed to account for. And each one represented an enticing rabbit hole to disappear down. The clock though, was always running. We needed to be somewhere at some time. And every decision I made required some calculation of a trade off of time…rabbit holes be damned. Nothing from my past makes me more equipped to deal with the day as a special needs parent than how that life taught me to treat time.

There is no mainstream lifestyle that accounts for having a child that can’t be left alone for the next fifty years. The child will always represent a resource draw we weren’t designed to account for, for more than a handful of years. That long dwell problem means that we can’t make short term trade offs to buy us time in the long run. So we are underwater, perpetually so. Time is the thing that runs out and never comes back. There’s no magic trick that will get you more time. No one secret I can tell you other than to treat your time wisely. And to have a sense that what you’re doing needs to be worth it. Rabbit holes are luxuries we don’t have. Waiting on hold for an hour for a $10 refund probably isn’t something you can do anymore. Driving across the county for the cheapest gas isn’t either.

Spend a moment on the literal meaning of the term “waste of time”. And remember that relaxation, recreation and self care are not optional activities. Make the decisions you need to, to avoid waste. Once you find the time sucks in your life you can do without, you’ll never go back. The urgency we all experience as special needs parents, in this case, can be put to good use.

You can get more of just about anything you’ve ever lost. Except time. No amount of money ever bought a second of time. Billionaire, playboy, philanthropist, genius Tony Stark said that once. It’s a lesson I relearn everyday.

15. Fatigue

A lifetime ago, I was walking across a field with a gnarly old SEAL senior enlisted on a deployment in some dusty corner of Africa when he turned to me and said something I’ve never forgotten.

“This is the best way to feel when you need to kick in a door. Dead tired. Hollow.”

It sounded strange but I felt exactly like what he said. We’d been up for three days straight. We’d wandered into an uncharted creek trying to find a place to fix one of our boats and stirred up a hornets nest of smugglers. We ended up on a two night chase down the coast until we finally had them cornered. I remember being too damn tired to be scared. Or worried. I just wanted to nail it down and fall asleep in my gear; which I did. It was a warrior’s sleep. Deep. Dreamless.

There’s a funny thing about that kind of fatigue. It doesn’t feel bad. It’s not exactly pleasurable either. It’s something closer to satisfying. There’s something to the mental connection to productivity that allows us to celebrate the suck. That life taught me a thing or two about fatigue. Being a special needs father years later taught it to me all over again.

The only thing that has ever pushed me to the mental brink the way being on a special operations mission did is being right in the middle of a bad spell with my son. When special needs kids get sick, it’s 10X the problem that other kids have. When they have sleep problems, no one sleeps. And sometimes, they just get out of sorts, which can last for days, weeks or even months, no one gets a second of peace. It wears you down to the nub. The secret to holding it together is crossing the mental bridge in your head to seeing the work the way I saw a mission. You have to see yourself in the care you’re providing to them. And to find satisfaction in facing it. If you see it as something just to get through, something tedious or unfair, something you ought not have to do, it will deplete you and erode more than just your physical energy. It will deplete your soul. But if you see at is an opportunity to serve, it has the opposite effect.

It’s the sort of thing you have to say before you believe it. And believe it long before you see it. But once you cross that bridge, you become something close to unconquerable. We are special needs fathers. We do things because they must be done. The world does not care if we are worn out. It does not care if we were up all night and have to make a 7AM deadline at work. The work is there. And we love it. Because we need to. And when it’s done, we’ll drift off into that warrior’s sleep. And wake up to do it all again.