Dear Kiran,

You are meant to be a dad. You have always wanted that.

You become an ultimate player; you become an engineer; you become a friend, a teammate, and a husband. But what you are meant to be, is a father. You are going to be that dad. The one who has kids all over him, going to soccer games, helping them with math. You know that’s what you are supposed to do.

For that reason, February 17, 2016 will be the happiest day of your life.

A dream come true.

A healthy, happy baby boy.

Revi.

And then on June 11, 2016, everything will change.

- - - -

Let’s go back to ultimate, shall we?

You will be knee deep in simply being a college kid at UT; you will be craving social connection and you’ll just sort of luck your way into playing ultimate. In the fall of 2003, you will be playing pickup basketball with Matthew Stephens and Skip Hobbie, who were on the college ultimate team. They will be talking up Austin summer league.

What you hear will ring as music to your college ears. You get placed on a team, it’s mixed, there’s party at the end of the season. And if that wasn’t enough, Skip will dunk the basketball after explaining summer league as if to put an emphatic stamp on how legit ultimate could be. Enough said. You’re in.

Many players have that moment, where they are hooked, and their fate is sealed. They become ultimate players. For some it’s their first tournament, for others, it’s simply getting addicted to seeing the disc fly. In that first summer season, people will call you fast and reward you for going deep. You’ll meet a lot of awesome people, you’ll go to the party; it’ll be a great time. But you won’t really have that ‘hooked’ moment…yet.

You experience your first tournament; you learn the ins and out of college ultimate. That year, UT will lose to Kansas in the regional semifinals. Up until this moment, ultimate will be that fun thing you do while you are at college. Seeing how devastated your teammates were after not qualifying for nationals. It showed you what it meant. That’s your moment. You’ll want to play all the time; you’ll want to get better; you’ll want to win.

From 2004 to 2006, you’ll become an ultimate junkie. You’ll just be that college ultimate kid.

From 2004 to 2006, you’ll become an ultimate junkie. You’ll just be that college ultimate kid.

You ride to practice with the guys on the team, you talk about ultimate all the time, you get pizza after practice, you eat terribly, you talk about practices, you go to parties, you talk about upcoming tournaments, you look at Scobel Wiggins photos online, you’ll even be on RSD [Rec Sport Disc], but you’ll never post, because it wasn’t cool.

You’ve been spending the last two years cultivating a group of friends. You have been creating that social connection that you longed for back in freshman year. Soon you’ll discover that there are tournaments outside the Austin area. Exhibit A: 2005 Potlatch. As an ultimate junkie, this moment will open your mind and expose you to the national ultimate scene. I don’t want to spend too much time of on wins and losses and on-field moments. But I must tell you about that first Potlatch.

By now, you’re an ultimate nerd. You know everything, and the access at Potlatch is insane.

One night you will be partying with players from the best club teams in the country and the next day, you’re standing on the line when Scott ‘Scotty’ Berens leans over and tells you to go cover Mike Grant.

There’s this ultimate universe out there and you get to go experience it all. And you get to do this with your best friends.

It was with this group of Texas ultimate friends that you make the jump to Doublewide. They are rebuilding and want to inject the next generation of youth. Initially you and your friends dismiss them. Why join ‘em when you can try to beat them. You can’t beat them, that’s why. So, you and several other Texas boys take the free DW shorts and make the jump to play with future friends Michael ‘Tank’ Natenberg, Scotty and others.

I don’t really want to tell you about the wins and losses. Those you’ll experience first-hand. The regional final losses, the universe point wins. Losing in the backdoor game at 2006 regionals and subsequent rebuild sets Doublewide on the path to a national title. A windy Sarasota morning when Doublewide firmly cemented itself as a team at the top of the game. Those moments will stick with you, you’ll reflect fondly on them. But the friendships and connections are what resonates years later.

You’ll meet your wife, Sarah Blyth, through ultimate, you’ll build the foundation with all your closest friends.

And those friendships aren’t just linked with ultimate.

Those friendships are for life.

A little more about Sarah because you will need all the help you can get. She is funny, athletic and has great hair. She’s also kind. She’s studying social work at UT and will eventually get her master’s in the same field. She works in psychiatric hospitals where she works with people experiencing mental health crises; needless to say, her work stories are going to be very different than your engineering work stories.

Back to your friends. To be fair, you never really know if these friendships are going to stick until you are all done playing the game that connected you. Some teammate friendships fade away when you don’t practice every week and travel for tournaments all year. Others stay solid, existing on the back of shared experience. The pressure moments build and strengthen relationships. You can feel inside that these will be your friends forever.

The power of the connections you have built will really dawn on you when you and Sarah get married. Mom and Dad want you to get married in a church. You and Sarah … not so much. So, what’s the next reasonable compromise? How about getting married in India…in a church? What started as a crazy idea, came to fruition when Sarah’s family agreed to the idea.

You’ll throw the invite out to your friends, fully expecting a less than stellar turn out. Before you knew it, you were on your way to Thiruvananthapuram with around 20 of your friends. You will be BLOWN AWAY by the support. Your wedding party will be the same guys that you’ve known for years because of frisbee; Tank, Scotty, Skip, Matt Stephens.

Your parents worked so hard to make this experience amazing for everyone. They’ll be up in the middle of the night in Austin calling vendors in India. The wedding itself, held in the same church your parents got married in. The experience, the support from your friends to come halfway around the world. It means everything. Truly a marriage built on love.

Not long after that Doublewide nationals win in 2012, you’ll start to phase yourself out of the game.

You stick around for a few more seasons, but it will start to feel like work.

That effortless exuberance that once filled your heart before every practice and game will start to fade.

It’s time to move on.

Upon reflection, you realize what drew and kept you in the game for so long. Sure, competing was great, winning felt amazing, and pushing yourself to be better was motivating. But if that same group of people was dropped into a different sport, you’d probably love it just the same. It is all about the people, it was all about the community. And, even though your love of the game may fade, that community, those connections will never fade.

Those same guys that you met playing UT, or won a championship with on Doublewide are the same guys that you will now choose to spend your time with. You do morning workouts with them, you go on bike trips with them, you play pickleball with them, all your kids will hang out together, you live near each other. THESE ARE YOUR PEOPLE. And you are lucky every day to have them in your life.

- - - -

Let’s get back to being a dad. Your dream will come true on February 17, 2016. You and Sarah will become proud new parents to Revi. Those initial weeks as parents and caregivers are nerve-wracking. You’re just hoping everything goes well and all the tests point towards good health.

Then, on June 11, only four months after he was born, Revi will be diagnosed with Tuberous Sclerosis Complex (TSC). That day in the emergency room will reside in your mind forever. Your whole life will change in an instant. It will be an out of body experience.

You don’t know how things are going to change; you don’t even know where to start, but you know that from here on, everything will be completely different.

There’s nothing you can do to ready yourself to hear those words. There’s nothing I could possibly say to prepare you for that day. Doctors will be handing Revi off to each other, running him through machines and tests. You will be bombarded with information you never imagined you would have to hear. The doctors say that Revi has benign growths in his body including his kidneys and brain. The doctors say words like epilepsy, autism and developmental delay. They say TSC is a genetic disorder that will affect Revi his entire life. You understand but you also don’t understand at the same time. You are in shock. Thoughts will start filling your head. Thoughts you could have never imagined having to think. What will Revi be like in two weeks? Two months? Two years? Five years? Ten years? Will he be able to go to college? As if that mattered in that moment. The doctors can’t even tell you if Revi will walk or talk. You will be thinking about every possible scenario and every outcome. You will be equal parts scared, drained and emotional.

You’ve been wanting to be a father for so long.

Being a father is your calling.

And now you are passing Revi off to a complete stranger so they can run him through another machine.

You have to watch his tiny body go through a cat scan machine.

It will be unimaginable.

Earlier that day, you saw a video of a child having seizures and it looked eerily similar to some of Revi’s unusual movements. We showed up to the emergency room hoping to have our new parent fears put to rest.

We ended up staying in the hospital for two days.

You’ll receive medication and be sent home with hopes that the infantile spasms would subside. Infantile spasms are a type of seizure that are common in babies with TSC. The doctors tell you that stopping these spasms is key for Revi’s development. The spasms don’t stop. You’ll be back in the hospital within the month for a two week stay. You’ll start this awful pattern of leaving the hospital, and then returning for another multi-day visit. Revi will be hospitalized at least 25 times in the first two years of his life.

The family and friend support will be lifesaving. Both Sarah and your families live in Austin and they will be hugely supportive throughout these times.

Those social connections, the friendships you’ve made. They will be so vital in times like this. Remember that. These are the friends that traveled across the world to watch you get married in an Indian church. These are the friends you won a championship with on Doublewide. But most importantly, they will also be the first to support you and Sarah through this time.

It will be instinct.

You have to call Tank and Cara, you have to call Scotty and Amanda.

It will feel like a part of you has died, and you have to tell your friends.

You aren’t even asking them for help — though they did ten times over — you are just sharing yourself with them.

That core group of people will be there for you, Sarah and Revi every step of the way.

The ways you will receive support are innumerable. Ways you didn’t even know you will need. Real friends will ask you real questions; like are you scared? Are you doing enough to take care of yourself? These questions cut through to the next layer. These are your people, and they are reaching out genuinely supporting you. There’s nothing casual about it. It will feel profound.

The broader ultimate community will stand behind you as well. When Revi goes in for brain surgery 18 months later, the Loskorns and Jungman-Isemans will organize a fundraiser that results in over $20 thousand. (In fact, the money raised will go towards buying a service dog for Revi. In August 2021, you and Sarah will pick up the service dog and Revi will have his new companion.) Again, you will be blown away by the support. Look at the names on that list. They love and support Revi, Sarah and you. It means everything.

Your friends will continue to show up for you during those next few years. It’s not so much accommodating you, Sarah and Revi as much as it is them consistently signaling that they care, they are here, and they love and support you. They will independently read books and materials about children with autism and TSC and share those materials with their young kids. They will continue to invite you to outings and get-togethers, even if you aren’t able to make every one of them.

This isn’t only your story.

This story belongs to you, Sarah and Revi and everyone in the community that has shown their support.

That moment in the emergency room changed everything. You knew almost everything was going to change.

You see Sarah sacrifice and quit her job to help navigate those difficult first two years. She becomes Revi’s primary caretaker. While doing that, she raises awareness for TSC by fundraising and running with Team TSC in the New York City Marathon. You watch in awe as she becomes an advocate for Revi, unafraid to push for inclusivity everywhere you go.

You aren’t going to be THAT dad. You do get to be REVI’s dad. You watch with pride when he takes his first steps a few months before his third birthday. He worked so hard in physical therapy. He is non-speaking, but he is a mischief maker. He loves to laugh at his own jokes, just like you. You love that he got Sarah’s great hair.

What won’t change is the outpouring of support and kindness from your friends and family. That lasts forever, and you will be eternally grateful.

Love, Kiran

Authorial Note:

One of the reasons I wanted to share this story was to highlight families with children that are neuro divergent. Sarah and I have taken on a position of presuming competence with Revi. Since Revi is non-speaking, it would be easy to assume he doesn’t understand what is going on around him. We’ve been blown away by what he has learned in his first five years. He is listening!

Presuming competence is basic respect that all people deserve. I’ll quote my wife’s Instagram post to explain:

“This is a mantra that Kiran and I have been trying to live by when it comes to Revi. I often have to remind myself, that although I do my best to understand Revi and know what he wants or what he needs, ultimately he is the only one who knows his own thoughts and desires. Just because Revi does not express them in ways that I understand, does not mean he lacks opinions. My job as Revi's mom is to give him opportunities to share his thoughts, to be creative in my listening methods, attune myself to his communication and find a way to join worlds with him. This is not something that has been taught to me by any medical professional, therapist or agency. This is how I've decided I need to guide Revi through this world. Although Revi does not respond to me with speech, I still talk to him and tell him what we are doing, where we are going, the friends we plan to see or why we can't swing in the hammock for three hours straight. He cannot read my mind and therefore it only makes sense to communicate to him, like I would with anyone else.”

I would like to encourage anyone reading this to view people who are neuro divergent or who are just plain different than you with an open mind and treat them respect. It may even help you become a better teammate.

Hindsight: Kiran Thomas