As I type away at our blog, one of the first entries of our new website, I’m sitting in the playroom at The Hospital for Sick Children in Toronto. My boys are playing together while Isaac receives his weekly Enzyme infusion, a treatment we worked so hard for him to get, and something that is keeping him afloat until we can find a cure.
The boys are tired after a long night in Toronto. John Mayer was in town to launch his latest album, Battle Studies, and Isaac was anxious to reconnect with his hero, friend, and favourite musician. We contacted John and he arranged for our family to have some guest passes to watch the show and say hello before he took the stage.
Since hearing the news last week, Isaac and Gabriel have been VERY excited! They worked away at making a card for him, and then spent the night before the show before putting together a special craft that they could give to him as thanks for taking the time to say hello.
Since the new CD came out, the boys have been taking every opportunity to listen to the new music. They were thrilled to watch the online concert from New York last week and they jumped around and sang for the entire concert! Their favourite song is “Half of My Heart”, a song that, of course, features Taylor Swift, another of the boys’ favourite singers. When Mayer sang the song during his online concert, Isaac was puzzled to learn that Taylor Swift would not be there to sing her part. “Well, who will sing it?” was the question he kept asking. He decided that he would be the best candidate to replace Taylor Swift and proceeded to make his card for John with that very picture inside, with John singing his part and Isaac singing Taylor’s part.
Isaac and Gabriel also thought it was pretty funny to see John standing on a carpet while he was playing his guitar onstage, which provided the inspiration for their craft. They worked hard to make a pop-up card for him. When the card is opened, John, Isaac, and Gabriel pop up on stage. Of course, all three of them are singing and playing guitar on their very own carpet. To say the least, it was an exciting week and fun week at home during the lead up to the show.
Heading into the show, we didn’t really know what to expect. The last experience for Isaac was incredible, and Mayer was so kind and caring that it was hard not to think about how disappointing it could be for him if he didn’t get the same warm reception this time around. We fully understood that John is a busy person, and this concert was the kick-off to his new album in Canada, so we prepared Isaac that John might not have that much time to spend with him and even a quick hello would be very special. But once again, John showed how truly caring and compassionate he is and gave Isaac (and Gabriel!) another life-long memory.
Walking backstage, we joined the rest of the Meet and Greet winners and waited for everyone to be finished with their photo-op with John. Isaac and Gabriel stood at the back of the room and watched with huge smiles on their faces as Mayer posed for a picture with each group. When John spotted Isaac at the back of the room, he flashed a bright smile before returning his attention to the Meet and Greet group. He took the opportunity to sneak another smile and wave at Isaac before it was our turn and, upon seeing this, Isaac went running across the room to Mayer and gave him a big hug. It was, perhaps, one of the sweetest things I have seen in a long time! Gabriel soon joined them and the boys presented John with their cards and craft.
Mayer spent a lot of time talking with Isaac, joking around, and genuinely enjoying the visit and the opportunity he was providing our young son. And Isaac finally got to ask him what he was going to do for Taylor Swift’s part during “Half of My Heart”! John responded that he was going to let someone else in the band sing the part which, I thought, would disappoint Isaac. But, Isaac being Isaac, he brought us all to hysterics when he responded, “Well. Maybe we should unplug their microphone so nobody can hear them and I could come in and sing the Taylor Swift part instead!” After the laughter subsided, John invited Isaac to his soundcheck in February to sing the song with him on stage; a truly generous offer. He then started singing the song, with Isaac filling in Swift’s part. This will be a memory we will cherish forever. I quickly snapped a photo with my cell phone, which I’ve posted on the right. As show time approached, our visit ended and John headed to the stage. Our family headed up to the VIP section to watch the show - Gabriel made it through 1/2 of it, Isaac watched it all, including the final song of “Friends, Lovers, or Nothing”, which was dedicated to Isaac. The marvellous show capped off an incredible night.
For me, the most special part of the evening was when Mayer remarked on how healthy Isaac is looking. And he’s right. Isaac is as healthy as he has ever been and we are thankful every day for that. Not a moment goes by when we don’t realize how lucky we are to have him in our life and to understand how far he has come since we began this battle. But we’re also very careful not to get too comfortable - you never know what the next doctor’s appointment will bring, or what the next test will say. We’ve gotten too comfortable before, and the pain comes back that much quicker if you forget what you’re fighting. We were able to tell John about the exciting research we are funding in Australia and New York City and our hope that one of them will lead to a cure.
I was very impressed with John Mayer last night. He took the time and effort to provide Isaac with another positive life experience and showed us that he is an incredibly caring and compassionate person. He made our son feel special and showed us why he truly is a role-model we can be proud of for our kids. Say what you want about John Mayer (and many of you will), but from what we have seen of him shows us that he is nothing but one of the kindest, sweetest, caring people we know. Tabloids and newspapers seldom write about the good in people; I guess it’s not what the world wants to hear. But John Mayer is more than what you see on TV or what your read about in magazines - he’s a kind, caring, man who has made a dramatic difference in our lives.
For Ellen and I, his kindness reminded us that we still have Hope for a cure. We’re a small family, working at a small charity, raising small amounts of money, but we’re fighting the war of our life. Sometimes we forget how far we’ve come and the inroads we’ve made in order to make a difference in Isaac’s life and find a cure for him. Seeing how loving John was with Isaac reminds us that we’re not alone - we have others dreaming for the same thing we are, and I know that John will be there with us along the way to help make those dreams come true.
Our motto at The Isaac Foundation is “Love, Laughter, and Hope”. Last night we saw and felt all three in John Mayer, and it couldn’t have been better. Thanks John.
And Thank you, as always, for your support.