Years ago, my oldest son, Michael (now 16 years old), was an athlete that also loved spending hours at the piano. He’d come in from either baseball or football or wrestling or swim practice and head right to the piano to play a few songs that were running around in his head. I thought it was great to have a talented piano player in the house… but I never realized just how great it would be that Michael’s love of the piano became his passion, a passion that I believe saved him from getting lost when he started running out of sports options.
Michael is blind. Although he has a little bit of vision, he is a Braille reader and a white cane user. When he played youth sports, teams were able to make accommodations for him – in baseball he’d hit off a tee and played outfield with a buddy; in football he played center and was guided out of the huddle by his guard. But as kids get older, they get bigger, and stronger, and faster. Soon it became too risky for Michael to be on the fields with sighted kids. While we had a few blind sports groups he had joined, not being able to take the field with his school and neighborhood friends anymore could have been quite devastating. But thanks to Michael’s passion and talent for music, he actually didn’t have time to dwell on what he lost. He was too busy creating experiences that breathed an incredible life into him and everyone around him. His classic rock band, Casual Friday, started gaining popularity. He started mentoring kids at his former middle school’s theater and rock band programs. He was busy, and he was quite happy.
Michael is one of those piano players that just can’t get enough. Although he can’t see much when we enter a building, if there is a piano there, he’ll find it. And he’ll play. And people will listen. Michael has a knack for being able to chat with people of all ages and they instantly enjoy him. He has that same gift at the piano. He plays, people enjoy. But the one getting the most out of it is Michael. It never ceases to amaze me to watch a child, a person, do what they were born to do. Their face has a whole different look when they are in that element; when they are making an impact.
The Piano Man
Michael is not a, shall I say, “typical” teen piano player – he isn’t into the classical music that lots of piano players his age grew up learning. One of the first songs he ever learned to play on the keys was the SpongeBob Squarepants theme when he was six… and eventually (thank goodness) he fell in love with classic rock. You can only imagine how affected Michael was when he discovered Billy Joel’s music. I watch him listen to Billy’s songs and it is like no one else is around. When he listens to Billy Joel I can see Michael’s heart and his mind enjoying the songs together – one loving the sound, the other figuring out every note, every rhythm. Michael can’t read sheet music, so he listens to songs and recreates them. Watching him do that with Billy Joel’s songs is like watching a master craftsman at work.
Do It For The Love Foundation
I tend to talk to lots and lots of folks on my journey of raising children that have a rare eye disease (both of my sons are blind). I go to conferences, meetings, online chats, anywhere there are people that have resources to help me find the tools I need to raise my children well. I was at the National Organization for Rare Disorders summit meeting in Washington DC last Fall and met lots of rare disease advocates, and more importantly, rare disease moms. As I was sharing stories of my two sons that have a rare eye disease, one mom came to me and told me about the Do It For The Love Foundation. She thought it would be a perfect fit for our family. I immediately went to my ipad and looked up their website and found this:”Bringing the gift of live music to those that need it most.” Wow.
After I returned from that meeting I asked Michael: “If you could get up close at any concert in the world, what/where would it be?” His answer: Billy Joel, Madison Square Garden. I reached out to the Do It For The Love Foundation folks to make our request for Michael, and within a few days I got a beautiful note saying they’d love to make this happen for my son. And a few weeks later, the ultimate email: they secured tickets to the concert as well as back stage passes! I can’t describe what is was like to give that news to Michael, so I am so glad my husband captured the moment on his iphone:
It just so happened that the concert we went to fell right around Michael’s sixteenth birthday. A birthday that started out a little upsetting – Michael’s friends are all getting their driver’s licenses but he can’t get his due to his blindness. As anyone and everyone can imagine, getting to be up close at your favorite concert takes your mind off your troubles and challenges for a while!
The night of the concert was right in the middle of the most epic cold temperatures for New York City. It was about 3 degrees, windy, miserable. But my Michael had the biggest smile as he walked into Madison Square Garden, was handed his backstage passes, and made his way with us to the private hospitality room.
After a few plates of snacks and cookies, Michael was eager to get to his seat: 8th row, right in front of the stage. As we walked through the back hallways I watched and felt Michael growing more and more excited. We walked together in the “sighted guide” mode: he held onto my elbow and we walked together in stride. As we got closer to the opening of the arena, I could see the doorway we were heading to, but Michael could hear the crowd getting closer, and he was squeezing my elbow tighter and tighter. And then we entered Madison Square Garden and got to our seats, and when I looked up I said into Michael’s ear “Oh my God, we are right in front of his piano!” I thought Michael would pass out.
Since he found out about the tickets, Michael talked so much about what songs he hoped to hear. He tends to obsess over set lists from previous shows before he attends one and notes what songs are common to each show, which songs are left out in some. I know what it feels like to have your heart set on hearing your favorite song only to have the artist not play it. For this show, Michael desperately wanted to hear his favorite song, Miami 2017. For days before the concert he would say to me: “Mom, could you imagine if I get to hear my favorite song, live, by Billy Joel, at Madison Square Garden???” It was all he had hoped for… and then i started hoping for it too! And just as if Billy Joel knew Michael wouldn’t relax all night worrying if his favorite song would be performed, he opened the show with it! Again, I have no words to describe the moment, but luckily got a bit of it on video:
I have watched that clip on my phone at least a few thousand times. I was so worried Michael would hate his sixteenth birthday because for the first time ever he has been left out of something big due to his challenge of blindness. But watching him singing along to his favorite song by his favorite artist in a place like that, seeing him have the time of his life, well… it still brings tears to my eyes every single time I watch it.
Michael smiled ear to ear all night. He sang along to every single song. He even got to enjoy much of the light show due to being so close to it. The concert was everything he wanted it to be and he was on cloud nine. As we waited for the fast moving, pushing and shoving crowds to disperse, my husband walked Michael toward the stage to get an even closer glimpse with all the lights on. And just as they were taking it all in, a member of the band’s crew jumped off the stage and handed Michael the drummer’s sticks that he used that night and the guitar pick that Billy Joel used that night. I think Michael stopped breathing for a few minutes – he froze in utter disbelief. What a way to end the perfect concert experience!
It is definitely not easy to raise children that have challenges greater than you ever imagined. And I often say that while I never chose this path of blindness, I have been incredibly blessed to have met the most amazing people on my journey with my blind sons. I am forever grateful to the Do It For The Love Foundation team and for Billy Joel and his team for making that night one of the most wonderful nights of Michael’s life, and perhaps more importantly, the most memorable part of his sixteenth birthday. We didn’t think about driving once 🙂
