Monday, February 15, 2010

The Heart of Life

Hey Folks,

We just got home from a fabulous family weekend away in Toronto. The Ontario government sure got it right by giving us a Fa

mily Day Long Weekend in the middle of February! We had fun with the boys, heading to the Ontario Science Centre, eating out for dinner, swimming, sleeping in a hotel, and just having some dedicated time together.

The highlight, by far, was our trip to the John Mayer Show at the Air Canada Centre. As many of you know, Isaac has been a John Mayer fan since his very early days and we have been fortunate to have John treat him to a few shows and stay in contact since their first meeting two years ago.

Isaac was excited about the opportunity to say hello again. He spent some time making him a Valentine during the week and was looking forward to taking in the show and seeing his hero on stage once again. And we were excited, too. However, nothing could have prepared us for what was to come on Sunday in Toronto.

The initial plan was for Isaac to join John for his soundcheck so that Isaac and John could sing “Half of My Heart” together on stage. But things had to change this week - apparently John was embroiled in some sort of media storm ;) On Saturday night, we got word that John could see Isaac back stage so the two could reconnect, so we headed to the show with a thank-you gift bag for John and his wonderful manager, Ken Hellie. Isaac wanted to give John a music CD/DVD of one of his other favourite singers, Canadian Danny Michel, an Isaac Foundation hoodie, and, of course, the Valentine that he and Gabriel worked so hard on during the week.

Backstage, John was just as wonderful as he was during previous visits, taking a lot of his time to answer Isaac’s questions and be a genuinely good friend to our son. Isaac began by trying to show John the picture he drew for him on my iPhone while we waited in line, a picture of a dark, starry night and a pink planet with a ring around it. It somehow got erased as we approached, but Isaac took the opportunity to show John his (my!) phone and play around on it for a while. Next, Isaac had a few questions that he wanted to ask - questions that he has been storing up since the last time he had the opportunity to see Mayer. His first question was “how do you remember all the words to the songs?” John gave him a lengthy answer about having things written down, which seemed to please Isaac.

The next question was something that Isaac has been wondering about for a long time - mostly because he is always giving music concerts here at home with Gabriel. He wanted to know what John Mayer would do if he needed to cough during a song. John laughed and told him that he would simply go “off-mike” during some music. After explaining what “off-mike” meant, he then started to have fun with Isaac and told him that the hardest thing was trying not to burp during a song. He told him that sometimes he might have a burp on the way and he would get afraid that if he sung a high note or that if he sang a certain way that the burp would come out. Isaac thought this through for a little bit and then exclaimed “why don’t you just delay your concert until you have finished your burp?!” We all broke out in laughter and John was literally on the floor laughing at Isaac’s simple cure to John’s predicament! To follow up, Isaac stepped back, put his hands on his head (his common “thinkers” pose) and finally said “I think you could just burp into the microphone tonight!” - A truly precious moment.

John had to get warmed up for the show, so Isaac’s time with Mayer was coming to an end. Isaac gave him his present and the two posed for a picture together. Mayer told Isaac that he was going to keep his Valentine with him, which brought a smile to Isaac’s face. From there, John and I had a chance to speak together about Isaac and our other son Gabriel. We also talked about the previous week - a conversation that I wish to keep to myself. I truly respect the man and feel that personal conversations should remain just that - personal.

We headed back down the hall and to our seats. Suddenly, Isaac went running back down the hall and calling to John. Mayer came back and Isaac said “I’ll know you’re thinking about me when I see our heart on the stage.” For a moment, John and Isaac just stood smiling at each other, an image that will last with me forever. Whether it was another moment of perspective for John, or simply a sweet moment shared between two people, watching the two together brought me incredible joy and feelings of immense love.

At the show, our seats were great - side stage and very close. Isaac and Gabriel put their ear plugs in and got ready to dance and sing to their favourite songs! And Mayer didn’t disappoint! All the boys’ favourite songs were played, including what Isaac and Gabriel say is “the loudest song of the concert” - Heartbreak Warfare. John gave a great show and interacted with the crowd most of the night. At mid-show, John took out his Valentine heart from Isaac and showed it to the crowd. Isaac beamed with excitement! And it wasn’t because 14,000 people were seeing the card that he made for John. It wasn’t because Mayer was speaking about him during his concert. It wasn’t even because he had people looking back at him as John told his fans about his pal. Isaac beamed because his friend and hero brought his Valentine onto the stage, something he promised to do. Isaac beamed because he knew that John was thinking about him, just like he said backstage. John told the crowd that Isaac said something to him backstage that “changed his day, his week, and possibly his whole life” and then recalled that moment when Isaac went running back down the hallway to him.

The rest of the show was wonderful. At one point, Isaac was playing air-guitar in the aisle and Mayer hopped up on his speaker and ripped into a guitar solo. For quite some time, the two were watching each other (John waved at Isaac) and playing their guitars - both content beyond belief. At the end of the show, John told the crowd about Isaac and where people could find information about where to help. He hopped off stage and immediately tweeted to his followers about where to find Isaac online.

In less then a day, we have have received over 40,000 hits on our Isaac Foundation website. We’ve been contacted by people throughout the world with words of encouragement, love, and support. People magazine linked to our blog entry and countless organizations are weighing in on the show in Toronto and Isaac’s involvement with John.

The majority of the press has been positive. However, there are a select few organizations and media outlets that say John is “latching” on to our organization to clear his name and look like a stand up guy. Obviously these organizations didn’t do their research to realize that this kindness isn’t anything new for Mayer. John has been with Isaac for some time now and genuinely wants to help.

In my mind, anyone who would take this incredible night and try to minimize it as a publicity stunt is disgusting, arrogant, and writing with blinders on. Mayer wants nothing but to increase the quality of life for our little boy. He wants to make a difference because he know he can. This isn’t an attempt to calm the tide.

To those of you who are blogging and writing, I ask you to think about these things before hitting the “send” button on your opinion piece - Is it so wrong to want to help us find a cure for a ravaging, very rare and debilitating disease that threatens our son’s life? If you could help provide hope for the future of a little boy, would you? Mayer wants to make a difference for our son, and he is in every way possible. This isn’t about anything but wanting to help.

Ellen and I will forever be in debt to John Mayer for the special way he treats our son and our family. This has been a long and difficult journey for us. We’ve never given up hope, even through some of the most difficult and dark moments of our lives, and I would never wish this journey on anyone. But if I had do it all over again, I would. We are blessed to have the family we have, and the love we get from our boys is indescribable.

To finish, I want to send out a lyric from one of John’s songs entitled “The Heart of Life”. During the first days of our journey, I often found myself wondering how we were going to find a way to save our son from the terrible fate that lay before him. As always, I turned to music and found this from Mayer: “Pain throws your heart to the ground / Love turns the whole thing around/ No, it won’t all go the way it should / But I know the heart of life is good.” During those early days, these words gave me hope when hope seemed lost; they gave me the strength to carry on, and they showed me that nothing good was going to come from us waiting around for something to happen. These words gave Ellen and I the perspective we needed to begin this charity and find a way to help our son. Now, 3 years later, these words show me that Mayer was right - The heart of life IS good. And I know that Mayer believes this too, and he demonstrates it each time he connects with Isaac.

I hope the media pick up on the good that John does. He deserves for the world to see the real person; the person behind the mask and the walls he’s felt he’s needed to put up over the years. I want the world to know how caring and compassionate he is. I want the world to know that he believes in Hope, and the Heart of Life, and that there is a future for Isaac. I want the world to know that he’s helping us find a cure; he’s helping us save our son.

But, in the end, if the media doesn’t print the good in John, it doesn’t matter. We know, and John knows, and sometimes that’s all that truly counts.

Thanks, as always, for your support.

With Love,


The Isaac Foundation


Mal said...

Wow - What an incredible moment between your son and John Mayer. No matter what people say about John, he will always be an outstanding and down-to-earth guy; his dedication to your son and your cause are obvious to this.

Sending warm wishes and thoughts your way; thank you for sharing this experience with the world!

Devan T. said...

Awesome blog!!! Thank you, thank you! :) I've been reading John Mayer's blog for a while now, so I know how long he's been connected to helping you and your son. And I love how you say "He deserves for the world to see the real person; the person behind the mask and the walls he’s felt he’s needed to put up over the years." That just makes such wonderful sense to me.

I read an article today about him bringing an 11 year old boy named Austin up on stage with him at his concert in Philly...again, just another amazing thing he's done. And I said the same thing on my Facebook how it's a horrible thing that the media isn't all over the good that people do. Then I then follwed it up with "some may have a filthy mouth at times....but it's the heart the speaks the loudest". :) And what happened to the good ole' "Actions speak louder than words". I'll continue to make judgements based on actions. Thank you for posting this blog and I will continue to say my prayers for you and your son :)


Anne said...

Back in 2002 I probably was the first Dutch John Mayer fan. That's why I'm absolutely sure that he has his heart in the right place. The special bond he has with your son Isaac only proves that even more! I follow John's blog so I already knew he really has every intention of helping Isaac and your foundation. So thank you so much for your lovely blog! You really portray him as the caring person that I know he is!!

His music helped me through very dark times. I think he is the most gifted guitar player there is these days and his words really touch me. In the end that's all that matters, right? In 2 weeks I'm finally going to see him live but have to fly 8000 miles to Los Angeles for it :). Eventhough I won't be able to shake his hand like Isaac did, I'm sure I will be just as excited as him!! Thanks again for posting this awesome blog. Sending you and your family warm wishes from The Netherlands!


Nyla said...

So amazing. He really is an incredible guy. I'm one of the millions of fans that his music has touched...changed my life, really. I wish I could tell him that he writes what I feel, and thank him for basically putting my thoughts to music..if that makes any sense. He's a huge part of my life and he doesn't even know it.

The media demoralizes his good deeds. What they don't realize is he's just a guy. But a guy who has the opportunity to help others on a much larger scale that most. But they can't take away what it is. A beautiful moment between him and your family.

You're in my thoughts. Good luck with everything.