Tuesday, July 08, 2008

Life Lesons from John Mayer

As I type this entry, I am sitting in the O/R waiting room at the Hospital for Sick Children in Toronto. The collective worry of the waiting parents make this room a very quiet and serene place.

Isaac has just gone into the Operating Room for his surgery, led by our favourite anesthesiologist, Dr. Jengus Carslie, and in one hour, all of our worries will be past us.

Ellen and I went back and forth this morning, knowing that today’s surgery is routine for most kids and that it will be quick. But we also know that Isaac isn’t most kids, and his airway has been our main concern every time he has to have an operation or an MRI. While ERT is supposed to help with airway issues, we’ve been very worried that his breathing has deteriorated so rapidly over the course of the year. We are fortunate that Dr. Carslie is looking after Isaac again today. Just knowing that Isaac is under his care makes this wait a bit easier to bear.

We know that we are blessed to be part of the family here at Sick Kids’ hospital. Andrea Hoover, the child life specialist that makes Isaac’s Tuesday visits special and memorable, dropped into the Operating Room area to see Isaac off and to help distract him before his surgery. She read books with him and made him feel at ease with the pending operation. As well,Isaac's friend, CLUTTER the Clown, has been scheduled to visit Isaac in his recovery room later.

I can’t imagine spending time in another hospital for our son. The smiling faces, caring staff, and tremendous standard of care are exactly what Isaac needs during the fight that he is faced with.

Last night, we had a wonderful evening out with Isaac’s new best friend, John Mayer. At about 3:30, we got word from Mayer’s staff that Isaac was going to get to meet his idol before the concert. We lined up with a group of contest winners for our time with John, Isaac’s anticipation growing with every passing minute.

Finally, Isaac spotted Mayer at the front of the line, posing for pictures with the other people in our group, and the smile on his face was priceless! His eyes lit up and the grin was bigger than I’ve ever seen before on our child! He kept whispering in my ear “There’s John Mayer! I don’t think he sees me yet,” and “Two more people and I get to see him!”

We thought Isaac was going to get the very quick hello and the quick photo that everyone in line got, and we would have been thrilled at that opportunity alone. But John spent a lot of time talking with Isaac, clowning around in front of the camera, posing with Isaac and shouting “Cottage Cheese and Yoghurt!” (Isaac’s pre-photo saying). Isaac wanted to know if Mayer was going to play his favourite song, “Vultures”, and John told him it was the song that was going to open up the show!

If it ended there, the night would have been a thrill. But Isaac wanted to know one more thing. As I’ve previously blogged, Isaac’s been spending most of his waking moments watching John’s new concert DVD “Where The Light Is.” While he loves the songs, the spot he keeps rolling back to is the moment with Mayer and his band are walking through the hallway from their dressing rooms on their way to the stage. The music is going in the background (“Waiting on the World to Change”) and the band look so full of energy as they take to the stage. Isaac wanted to see the hallway! For most of the day, he kept opening up the DVD booklet and showing people the picture of the hallway that Mayer and his band walk down. So Isaac asked John if he could see the hallway that led to the stage.

John told Isaac he would try to figure something out, signed his DVD for him, and we were on our way back to our seats. Ellen, Isaac, and I had a picnic on the pavement (beer, pizza, pretzels, and popcorn) while we waited for Mayer to take the stage.

(Note - They have just done a Stat Call for Cardiology to the Operating Room and I’m worried that it’s for Isaac. This is a feeling that I don’t wish on any parent. Doctor’s have gone running by the waiting room and, as I look around the room, nobody here seems as nervous as I am. While I know the chances that the call is for Isaac is remote, I still feel sick because I know that a parent here is about to go through a very painful experience.

Being here is always so very humbling. This building has given me the most difficult, painful moments of my life. But our time here has also been one of reward and promise. Going through this journey has brought us very close as a family and I have cherished every moment we have spent together. We have been able to put the true meaning of life in perspective and bask in the love that we share for each other. If I had to, I would do this all over again and not change a thing.

Anyhow, back to our update, although I think it will be more difficult to type with my now shaking hands…)

While we were waiting for the show, we got a call on our cell phone with someone asking for us to meet backstage again – John had a special surprise for Isaac! Before every show, John and his band do a special cheer, a sort of team-building, bonding cheer to that prepares them for the night on stage, and John wanted Isaac to be part of the cheer.
We got back stage, John introduced Isaac to the band, and they got together for the group cheer, this time down on their knees at Isaac-level. Everyone put their hands in and they asked Isaac what his favourite words were. After a bit of thought, Isaac responded “JOHN MAYER!” The band looked around at each other and John said, “Well, OK. John Mayer on three,” and the cheer went up!

It was a beautiful moment and I was so impressed by Mayer’s thoughtfulness and his patience with our son.
After this, it was down the hallway and onto the stage to the waiting crowd of about 20,000 screaming people! And Isaac got to walk with the band!

It’s important to note that I think they had to find a hallway to walk down because we seemed to take a round-about way to the stage. But John led the way, followed by Isaac (and Ellen) and the rest of the band. And they went all the way to the stage! And onto the stage! In fact, Isaac, Ellen, and I sat and watched the show from the speaker on the side of the stage, Isaac with a beaming smile the entire show.

Leaving the stage, Mayer gave Isaac a high-five, came over to me and said “Don’t worry…we’re going to figure this out.” Whatever comes of anything, I know that he is right because I know in my heart that we will figure this out, no matter what it takes. And all the hard work and sleepless nights, and the many events and presentations we deliver, will all be worth the tireless effort.

And the people we meet along the way will be with us to celebrate when we finally announce that we’ve found a cure for Isaac. I dream of that day often, and I know the soundtrack for our evening of celebration will be John Mayer's music.

I was so impressed by John Mayer last night. Not because he put on an incredible show (and he did!) but because of the caring and compassionate way he treated my son. John took time out of his busy schedule to provide Isaac with a positive life experience, one he won’t ever forget.
He was genuine and good, proof that he truly means what he writes about on his blog.
In his latest entry, Mayer writes “It’s a funny time to be alive right now, in that I’m not quite sure we’re celebrating like we should. I don’t mean the ‘hand me your keys, Dan!’ celebrating. I mean the inate act of 'celebration’ human appreciation. Group reveling. A general sense of ‘This is my tribe and this is our fellowship.’ Like a concert.” Mayer put his words into action last night as he celebrated our son with our family. He gave us all ã moment away from it all and I will never find adequate words to properly thank him for his kindness.

Mayer also writes about the challenges that people will inevitably face in their lives: “Chances are you won’t get hit by that proverbial bus people always talk about when they’re smoking a Lucky Strike and tipping back on their chair. Odds are also on your side (thank-God) that you won’t ever get the news from your doctor that you have only months left to live. But you know what he may very well tell you? That you need a new hip. Nobody ever says ‘live it up because someday you might need a new hip’ but it’s the truth. They don’t say ‘Be good to one another because in time we’ll all know a medical lab technician on a fist name basis’ but it happens every day.
My point is that whenever that someday comes, when I slide into the MRI scanner and the thing starts spinning up, spitting lasers and screaming into my ears, I may very well say to myself ‘I wish I had just one more of those summers.’”
Mayer is right, and it didn’t take a death in the family, or a devastating diagnosis for him to realize the importance of celebrating each and every moment.
As a family, we understand this as well. Make the most of your time, enjoy your family, and cherish every moment you have together. Remember, you never know what's around the bend.

Anyway, Isaac should be coming out of the Operating Room at any moment. I’ll update more later and try to send some photos when I can.

Thanks for hanging in there with us.

PS – Doctor just came out – Isaac is fine! No airway issues to deal with, thank God.
With Love,
The Isaac Foundation

20 comments:

michelle3m said...

Thank you so much for sharing that story! I've been a fan of John Mayer for a long time and I'm not surprised that he did something so amazing for your son. I'd love to see the picture of Isaac with John too. Hopefully the positive energy Isaac got from last night will carry him for a while.

Alie V said...

Wow what a great story! I was directed here through John Mayer's blog and this confirms everything I've always thought about him. What a genuinely nice and thoughtful human being.

All the best to Isaac and your family!

mcs said...

I'm a new fan of John Mayer and was directed to your site through his blog. I'm now an even bigger fan of your son and both of your efforts to help find a cure for Isaac. I can't imagine the journey you're on, with all of the challenges you face daily. Your blog captures the great courage and beautiful spirit with which you live your lives. I was deeply moved by your story. Isaac and your family's search for a cure will be in my prayers. All the very best!

buttsies said...

Thank you so much for sharing Isaac's story. What an amazing night!
John Mayer is a lucky man having met Isaac.

I wish you all the best.

Kate said...

Don't be surprised if you get an influx of traffic from fellow John Mayer fans. Your story has made the rounds, so to speak, and I know I'm not the only one who was touched by the story of Isaac and John.

Best of luck and good fortune to your family and to Isaac especially.

angela said...

John's blog directed me here to learn about your sweet boy Issac. I have loved John's music for several years now and have enjoyed reading his blogs for the past year. How cool is it to see that he walks the walk. And how nice to be introduced to Issac and his family. Keep on living your life to the fullest Issac - you have taught me to enjoy the moment and be amazed at the possibilities. My love to you all!

angie mauck

JMislove312 said...

Just like all the other people who have seemed to comment on this I was directed to this site through John's blog and I'm glad he linked us with it. John is a good hearted person and your son is very lucky to have met him. Keep your head up high and I wish you luck!

The Life of Mel said...

Found you from John Mayer and tryjm.com. What a story, and I'm so glad Isaac went through the surgery just fine.
You all are in my thoughts, and gosh, I'm so excited about Isaac's concert! I'm with John in hoping that he spends a lot more time at concerts! :)

Cornflower said...

I wish you all the best little Isaak!!!

Steph said...

All the best to Isaac, he now has even more people cheering him on.

Jill Trumbell said...

All the best luck to you and your son, Isaac. After hearing about your foundation from John Mayer's blog (I am a HUGE fan), I was touched. You truly have a very special little boy on your hands and your story is close to my heart. I have a cousin at the Children's Hospital in Milwaukee (she has a caringbridge website with the name being BridgetLynn) and realize you can't take a single moment for granted. Love to the fullest and keep your heads up! I will keep you in my thoughts and prayers.

Sarah said...

just found out about you from JM's post on his blog! What a great kiddo! I wish him and yours the best of luck.

mom of 3 boys said...

We will share your story with friends and family to raise awareness. Thanks to Sick Kid's surgeons my son can still play Heart of Life on the guitar. We have had 2 visits to that surgical waiting room and (different kids- different reasons) and remember the anxiety well. Both Isaac and John are excellent male role models for our family. We will follow your story...

Samantha said...

I'm very happy that his operation went ok! Like a lot of others, I got directed here from JM's blog. Thanks for sharing your story, JOhn and your son both seem like amazing people.

Mary Wallace said...

lovely! blessings to you. Isaac is a VERY special boy and he has brought light into so many lives this way.

Anonymous said...

I, like many others reading this now, found you through John Mayer's blog. I felt compelled to tell you that I was moved to tears while reading Isaac's story. I am deeply inspired by him as well as the rest of your family, and I admire your strength and positive mindset.

Here is to the future and brighter days.
Isaac will be in my thought.

Anonymous said...

What a strong little man you have in Isaac! I am so glad to hear that he got to meet John Mayer. I hope this helps Isaac stay strong and look to tomorrow. Isaac and your family are in my thoughts and prayers. Best wishes.

Anonymous said...

I'm sitting here bawling my eyes out after reading this blog. It was even better than John's! And... tell Isaac that I got to meet John too, on 7/12/08, just five days after he met him! And I was chatting with Lauren about how she got the job with John, and she mentioned that they had just that afternoon had a call from US magazine, wanting to do a story and photos on Isaac. I had already read John's blog, so I knew all about Isaac. And guess what? I'll be seeing John in concert AGAIN this Saturday night, and I can't wait!!! My best to Isaac!

Cady said...

People should read this.

namrata4 said...

I was at that concert and i felt all of the compassion that John had for your son. To hear about all the things he did for him before the show makes that understanding so much stronger. Good Luck Isaac you are going to make it through because there are a whole bunch of people who care about you.

p.s. loved your valentine.