Special

I would like to tell you about my weekend. Specifically, I would like to tell you about three events that took place over the course of last weekend.

Friday night, Megan, Amelia, and I were invited to dinner by three of my first and longest-running client families.  These are three families tied together by the fact that they each had a son with Down Syndrome. Peter, PJ, and Erik were the best of friends since they were little guys and playing on the same soccer team. To say that they were a three-way tie for the largest characters in history is an understatement. I came into the guys’ lives when they were in their early teens. I was hooked within minutes of starting my new job at Adam’s Camp in 2004. They were the guys to know. Everyone knew and loved these guys and they lived up to the hype. I worked with them in my three summers with camp, and then began to work with them individually and as a group when I started The Rhythm Within (business, not blog). They were wonderful, all three of them, and challenging in their own ways. I cut my teeth on these guys as I learned about the unbelievable joy and complete and total stubbornness that can come along with Down Syndrome. These characters helped to formulate the character that I have become and I will forever be grateful.

Two of my favorite moments with the boys:

1. In the heyday, I invited the boys to one of my band’s concerts. They were the hit of the show. Screaming for every song like we were the ‘Stones. And when I gave them a shout-out from stage, they all stood up, the place went nuts, and we didn’t get back to our next song for several minutes. Afterwards, I made a CD copy of the show for each of the guys. A few weeks later, I took them out to dinner. On the way, on my iPod, one of the songs from that show came on. The guys got so excited. They sang every word perfectly and by the end of the song, I noticed that they had memorized every song of that show. Including the banter between the bandmates on stage. They all three had memorized the entire CD. It was awesome.

2.  The other favorite was when I took the guys to a movie, and on the way, Peter said, “Jonah, you need to get a girlfriend.” And in my prime sarcastic manner, I responded, “Oh yes Peter, I totally forgot to pick up a girlfriend. On the way home, I’ll stop by the girlfriend store and pick one up.” To which in all sincerity, Peter responded, “Jonah, there’s no such thing as a girlfriend store.” Ever kept on my toes.

These three families have shared so many good times over the years and many tough ones as well. The toughest of which was when Peter died of a sudden infection a few years ago. Going through 15 years with these amazing families, and recently announcing that we would be leaving the area, these families wanted to celebrate and break some bread. And so we did. And it was a wonderful night. Talking of old times and those yet to come. We drove home from that dinner feeling lucky.

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Erik, Me, and PJ

The next day, I woke up and got Amelia dressed and fed and we went out to catch a basketball game. This was no ordinary game. This was a unified basketball game and beautifully different from the typical. My dear friend and colleague, Jenn, and her husband coach one of the teams of this league devoted to players experiencing disabilities. Amelia and I sat and watched for about an hour. And smiled the entire time. There were no overhyped parents on the sidelines screaming for their child to have more ball time. No intensity that scoring the most points was the measure of success. In fact, I never knew the score and still have no idea who “won”. What I did see is two teams having a blast. Two sides of bleachers of family and friends cheering when either side scored a point. There is a “no stealing” rule in this league and when certain players are ready to try and shoot, it is simply understood that you give them a little space to give it their best shot. I even saw my buddy Wes get a rebound from the other team and hand the ball back to the opposing teams’ player to try the shot again. It was the good stuff. Wes noticed me watching a few minutes later and came running off the court and up to me to say Hi. “Hey brother, I said, but you better get back in the game, I’ll see you later.” This unified basketball tournament had several hundred people in attendance, and I got the gift of seeing old friends from various chapters of my disability community path in Colorado. Made me reflective of how lucky I have been to be a part of such a community for so long. And that Amelia will grow up bearing firsthand witness to this level of truth and beauty. I left the game smiling. And reminded yet again of the greatness of humanity.

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I rested throughout the afternoon and then headed out for my evening plans. I was serving as staff for the Tall Tales Ranch Lasso activity. This is a monthly outing where adults with disabilities mix it up with the community and expand their circle of understanding with organic exposure. That night a group of 13 were headed out to see the Colorado Mammoth play indoor lacrosse. My first time seeing this sport live and it was actually really fun. We got to be part of the high five tunnel as the players come out of the locker room for the game. And the game itself is really fun to watch. And yet, as the night wore on, and per usual, the sport was less entertaining than just hanging out with the gang. I sat between Jake and PJ. Jake yelled at the top of his lungs whether there was a ball in play or not. It just didn’t matter. And I got to watch as the people in the row below us graduated from slight uncertainty about his screams to full blown celebration with Jake every time there was a score. They high fived him before they high fived each other. Kasey, my sweet friend who is literally half my height, sat behind me and gave me a few random hugs and told me that she loved me. As we walked out of the game, PJ looked at me and said, “Was that fun Jonah?” “Yes it was my brother.” “To which he replied, “Yea, but was it a hoot?” “Absolutely a hoot Peej.” On the light rail train ride back to our meeting point, we had a dance party, sang songs, and laughed like the old friends that we are. And as I got into my car to head home, I, once again, felt lucky. This weekend had been a much-needed and unexpected reminder of what community is all about. And how blessed anyone is to be a part of a community this rare.

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I have always disliked the term Special Needs. And over time, I think I have come to see that it is the needs part that seems misguided. It focuses on the fact that this population has needs of us. Which they do in the same way that every person in the world has needs of others. In that regard, they are not special. They are the same. As I was driving home and reflecting over my 20 years in the Colorado disability community, I think the word special fits to a T. The people I have met in Colorado who experience disabilities are incredibly special. Far beyond normal. And lightyears ahead of the rest of us when it comes to wisdom and how to live life. They are touched by something that sets them apart. And one of the biggest reasons that I have worked with them for my entire career is that I want more of what they got.   The majority of my friends in the disability community have distinct personalities. They are blissfully free from the endless pursuit of cool. Which ironically makes them totally cool. They are unafraid to express their true emotions at any time. And cliché as it may sound, they usually end up teaching those who serve them far more then they are taught. I pay my bills by hanging out with a bunch of Buddhas. And my level of wisdom is a direct result of my time with them. And as I sat next to Jake during his 3rd period repetitious chant of “YEE-HAW, RIDE EM COWBOYS!”, I could do nothing but smile towards the sky, wink at my friend Peter, and thank God for this weird and wonderful life.

 

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