Kyle has an untreatable, incurable (so far) neuromuscular disease called Spinal Muscular Atrophy, which means his body was weak at birth and will get weaker as months and years go on. His brain is strong and smart and clever, but his voluntary muscles are too weak for him to sit up, crawl, walk, or lay down on his stomach. He has driven himself in a power wheelchair since age two. He has endured surgeries for muscle contractures (joint muscles so tight that he can’t straighten his legs). His jaws are sometimes too fatigued to chew and he has weak swallow muscles, so he is nutritionally sustained by tube-feedings at night through a hole in his stomach. This kid is a warrior and has a lot to deal with on a daily basis, which is why we are so relieved that he has baseball in which to escape, lose himself in the game, in the competitiveness, the determination to get on base or for his team to win.
ESPN My Wish (part 1/2)
16 Aug ’13 By
My kid loves baseball–like, really loves baseball. He loves playing baseball more than he enjoys sitting on the sidelines watching others play, but usually he will take what he can get and loves to watch an MLB game on television if he doesn’t have his own game to play that day.
One difference between Kyle and many other baseball-obsessed young boys is that the baseball he plays is on a special field made not of grass and dirt but of a wheelchair-safe, flat, rubberized surface with bases and base lines permanently painted. The field is a Miracle League field–incidentally, this field was built primarily with a gift from the Diamondbacks Foundation and anointed Dan Haren Field after the Dbacks pitcher at the time, who also happened to be Kyle’s very first bobblehead doll–and it is the only wheelchair accessible field in Arizona where he can play baseball. Dan Haren Field is where Kyle feels at home.
Kyle is only recently six years old and so lacks the decades of player facts and game memories that other baseball fanatics might have, but he sure knows his Arizona Diamondbacks. The Dbacks are his favorite team ever since he attended his first game at Chase Field at age four. He watched on TV every game after that. He watched intently–he didn’t miss a thing. He memorized jersey numbers, player stats, and batting lineups. At home, watching a game when the Dbacks were pitching, he put on his tiny red glove and went through the pitchers’ motions. When the Dbacks were batting he demanded his plastic bat and swung in time with the pitches. When he’s in the hospital during baseball season, we watch the games streaming on my laptop.
Kyle was welcomed to Make-A-Wish years ago but took a while to decide upon a Wish. What would his one true Wish be? I suspected it would something to do with baseball, but the Wish needed to come from him when the time was right. And then last summer, he decided. His one true Wish was “to be a real Dbacks player”. He ached to be part of the team, I knew it and in those moments I could sense it, know it. Attending a game at Chase Field wasn’t enough–he wanted to be on the field with his heroes and breathe all things baseball.
At the time, the baseball season was nearly over here. The Dbacks were fighting for a playoff spot. Make A Wish asked us if we thought we should push his Wish to happen right away or wait until next season when there would be more time to plan. All I could see looming in front of us was flu season.Each year my only goal is for the whole family to survive flu season, and my freshly sanitized fingers crossed themselves for six months while he patiently waited. Kyle’s twin sister, Lauren, spent some serious time in ICU with pneumonia twice this year, but she recovered. Kyle caught some sniffles, but was well enough to catch some spring training workouts and the next thing we knew baseball season was go for launch and it was time to tell him he would get his Wish.
The rest, as they say, is history. Or in Kyle’s case, the rest is scheduled to air on Sports Center beginning this Sunday 18 August 2013 at 11pm Eastern. “My Wish” is a collaborative effort with Make-A-Wish which chronicles the granting of unique sports-related wishes for children. Hosted by Emmy Award-winning journalist Chris Connelly, this is the eighth year in which ESPN has delighted Wish families and viewers alike with the stories of some amazing children and their incredible Wish experiences. In layman’s terms, this series rocks the casbah in every region in which there are casbahs.
I haven’t seen Kyle’s My Wish segment yet. Like you, I must wait until 11pm on Sunday. I’m super nervous! I hope you can hang in there and watch ALL of the My Wish stories–each one is unique and perfect and I can’t wait.
The first My Wish story begins tomorrow (Saturday, 17 August) at 11pm Eastern. Watch it. DVR it. Each story runs in Sports Center continuously and ends next Thursday. This next week is everyone’s favorite time to watch Sports Center. Even I know this.
Follow @SportsCenter on Twitter and use #MyWish to join the conversation. Enjoy some amazing stories. And view the My Wish archive here. Tweet at @byrdsforacure should you feel so compelled. And send mad props to @SportsCenter and @MakeAWish for continuing this series. It’s so amazing, right?