The Unexpected Best Buddy

Pictures and this story used with permission from Henry's family.

“A friend loves at all times, and a brother is born for a time of adversity.” -Proverbs 17:17

Angelman Syndrome is a rare genetic condition that affects how a child develops, especially in how they move, speak, and learn. It happens when a specific gene, called UBE3A, doesn’t work the way it should.  In simple terms, the gene doesn’t wake up. This gene plays an important role in how the brain functions. Without it, children often have trouble talking, may not walk well, and may have seizures. One unique thing about Angelman Syndrome is that many kids with it smile and laugh often and they’re usually very happy and social.  Angelman Syndrome is certainly not the consequence of anyone's actions.  It is incredibly rare, as only 1 child in 20,000 is diagnosed with Angelman’s.  

God placed an incredible young man named Henry in the life of our family when he was 3 years old.  Henry is the 1 in 20,000.  Henry is a sweet young boy full of joy and energy who lives right here in our small town. While he may not speak with words in the same way that you and I might deploy them to carry on a conversation, Henry has a uniquely special way of connecting with people through his bright smile and infectious laughter. He loves with his whole heart - he loves music, loves to take pictures and videos, loves to give giant hugs,  and he loves spending time with his family.  In a lot of ways, he loves the things any kid his age loves. Undoubtedly,  his journey comes with some extra challenges.  Despite those challenges, Henry's spirit is full of light, and he reminds everyone around him of the power of patience, kindness, a simple smile, and unconditional love.  Our son Kaleb was in high school when Henry started kindergarten.  The connection that brought them together was through my wife Stephanie, who is one of Henry’s teachers.  Kaleb and Henry saw each other nearly every day.  There was nothing that would prepare us for the bond the two of them would form over the next three years.

That year as a dad, I knew that my son was still trying to find his place in high school.  I have to be honest, especially now that I am back in the hallways of a high school, things are significantly different today than they used to be for a high school student.  The pressures of achievement, accomplishment, and performance, paired with the uncharted territories of the destructive influences of comparison culture cultivated by social media, and the instant gratification that comes from having the ugliest parts of the world staring back at you on a screen, can often be debilitating and paralyzing.  There were moments in my son’s high school days that were really hard to watch and wrap my mind around the fact that I couldn’t do anything to help.  I felt like I was watching from the outside looking in as he navigated some lonely days, as he was driven by his dreams and goals rather than some of the other things that motivated his peers.  But Steph and I have always been big believers that our kids needed to learn how to do hard stuff, so we did our best to stick to our philosophy, giving them some distance and letting our kids navigate their challenges in life, giving them room to struggle, learn how to seek the Lord, and even fail safely.  So we watched as Kaleb navigated his unchartered waters of being a successful student athlete, the college recruiting process, and walking away from relationships with people that might have potentially taken his focus away from his goals.  Kaleb’s days in high school often left me wondering why he didn’t spend more time with his friends, doing stuff that more normal teenagers did while in high school.  Kaleb had a small handful of good friends, but there was one who would unexpectedly win the title of “best buddy” - Henry.    

As their friendship continued to grow, it would become more common that if Henry might be experiencing a tough day down the hill at the elementary school, it would simply require a visit from his best buddy “Ka - Ka” as Kaleb became affectionately known.  More and more of the teachers in the elementary school learned some of the expressions and sounds that Henry would make in the hallways, and there was one that stood out above them all.  It was the pure joy and excitement of a young boy whose best friend arrived on the scene.  When Henry saw Kaleb peek around the corner, or even hear the faint sound of his voice echoing through the hallways, Henry’s eyes would light up, his smile would broaden, and his day would brighten up just a smidge.  The details of a difficult day became nothing more than a distant memory for Henry.  

But I often wonder if Henry might be able to comprehend just how important he has been to his “Ka-Ka” as well when he needed it the most.  When Kaleb’s senior year came around, Kaleb had to navigate some tough waters.  The fall of 2024 was hard for him for a lot of different reasons, but all of the different battles were in the shadows of Kaleb’s pending decision on what was next after graduation and his basketball recruiting journey.  Things didn’t get much easier for him when winter came.  He and I had a lot of discussions about the fact that my first year back as the head coach of his basketball program wouldn’t be an easy one.  We had so much work to do, and we knew that the time it would take to turn around the program would far exceed the few months that he had left in his high school playing career.  Despite the ebbs and flows of all the things, there was one constant - Kaleb’s visits to see his best bud, Henry.  It was obvious the tables had turned.  On days after a tough loss or a hard week, it was Kaleb’s demeanor that would change when he would see Henry.  Kaleb’s eyes would brighten, the smile would return to his face, and his fatigued body language would straighten up a little every time he would hear Henry’s unique laugh and see his arms stretched out wide as he would gallop down the hallway to see his best buddy.  It was early in the basketball season when I witnessed one of these exchanges, when the thought struck me like a lightning bolt, “Kaleb needs Henry as much as Henry needs Kaleb.”  And that’s when I realized that Kaleb and Henry both had found their unexpected best friends.  Just like best friends do, they have a way of making the good days better, and the tough days a little more bearable.  

Last basketball season, senior night rolled around in late February.  Our entire family had done our best to prepare for the night we knew was inevitable, but had prayed it wouldn’t arrive so quickly.  Emotions were high, we knew that this season would be full of “lasts”  and it was winding down.  Before tip-off, I was going through my pre-game routine - a prayer at the end of the bench, going over our match-ups, trying to get my finger on the pulse of the gym, and just simply trying to take it all in and come to grips with the finality of the moment.  I looked across the gym floor in the top corner and I saw a familiar face under a head full of curly blond hair, and I recognized his smile - the same smile that lights up his elementary school was lighting up our basketball gymnasium.  Henry’s family had brought him to watch Kaleb’s last home basketball game.  Just like that, there I was in that moment, and now I knew how it felt.  Henry, in the way only he can do it, put that moment in perspective for me.  He reminded me that no matter what happened that night, everything was going to be ok.  

The game tipped off, and my mind settled into the task at hand.  The fellas played well that night.  Kaleb played an inspired game, a game that was fitting for his last game ever in his home gym and in front of his young friend, who was there for him from the beginning of the year to the end of his basketball career.  But the highlight of the night wasn’t Kaleb’s 20-plus point performance, it wasn’t the win, it wasn’t the hugs I shared with all my seniors that night, including the tear-filled embrace with Kaleb at the end of the game, it wasn’t the emotions of all the pictures, and it wasn't the congratulations.  After a locker room celebration, Kaleb, still decked out in his drenched, stinky uniform, ankle braces still cinched tight, and a towel draped around his neck, took off to go find the guy who got him through the year - Henry.  Still smiling, still excited to see Kaleb no matter what,  just like every other day.  And just like every other time Henry got to hang out with Kaleb, he didn’t care about the game, whether the day was good or bad, whether he was in a good mood or a bad mood, and even more impressive, he didn’t care that Kaleb was soaked in sweat, smelled like dirty socks, and was exhausted from the game.  He was just consumed by the moment.  

After the dust had settled on the season, graduation had come and gone, Kaleb was excited that he had the opportunity to work part-time this past summer with Henry’s family as a personal aid for him.  He expressed to me and Stephanie several times, “I’d probably have done it for free, but I’m glad I don’t have to”.  We always laughed at the thought, but we knew he wasn’t lying.  We knew the transition of leaving for college was on the horizon, and we knew leaving Henry was going to be as tough as leaving us in a lot of ways.  Stephanie and I knew that being around Henry before he left was going to be good for him.  A little over a month ago, we loaded down Kaleb’s blue Tacoma, and off he went.  He’s settled into school really well, he loves his new basketball teammates and coaches, and he’s started his journey to becoming a Physical Therapist.  A lot of things have changed.  But one has stayed the same.  At least once a week, Henry gets to have his FaceTime call with his “Ka-Ka.”  It should be no surprise that the call usually happens on the day he needs it most - he meaning Kaleb.  I’m guessing it still might help Henry a little too.  Who knew that Proverbs 17:17 would be so true in such a beautiful way - a friend really does love at all times, and a brother really is born for a time of adversity, even if the friend - more accurately a brother - named Henry, was so unexpected.  

For more information about Angelman Syndrome please check out http://angelman.org