This was taken the morning of Jake’s surgery – June 5, 2000. You can see how blue his feet were.

This post was originally published in 2012. I’ve updated it with some new details.

Sixteen years ago today, Jake had his last heart surgery.  He was 8 months old, 11 pounds and very, very ill.  This would be his fourth surgery in his short life and the third that was literally life-saving.  He was too small for the surgery, but he was also too sick to wait.  So, we did what we had to do.  I remember with vivid clarity handing him over to the nurse at Phoenix Children’s Hospital and watching them walk into the operating room.  In the weeks and months that followed that surgery, the doctors admitted that they had little hope that he would survive.  I heard more than one call him a miracle.  His pediatrician looked me in the eye and said, “he should not be alive”.  You can read more of his story here.

If you’ve been reading my blog for long, or if you’ve known me for more than a year, you know that I say the same thing every June 5th (except for the year I forgot!).  I sound like a broken record.  I’m grateful — so grateful.  But mostly, I’m humbled that I get to be his mom.  He makes me want to be a better person.

One of the things that has always amazed me is that he just isn’t afraid of anything.  He isn’t afraid to take risks.  And, when he decides he wants to do something, he gives it his all.  And most of the time, he does it with an infectious smile on his fact.  He’s not a big kid, but he’s got big personality.  And, people are drawn to it.  These days, as he faces the weird social vibe of high school, I’ve been impressed with how comfortable he is with himself.  He’s just not afraid to be who he is, and in turn, he accepts people for who they are.  I’ve often wondered if this comes from a deep, albeit somewhat sub-conscious, realization that life is short.  I love watching him grow up and I am so excited to see what he does with his life.

Unfortunately, 1 in 100 children are born with a congenital heart defect.  The silver lining in that statistic is that my son has some role models to look up to.  I’ll never forget when he realized that Shaun White has the exact same heart defect that he has, Tetralogy of Fallot.  And, here he is…an Olympic gold medalist.  Max Page also has Tetralogy of Fallot.  Name doesn’t ring a bell?  You know him as Darth Vadar in the brilliant Volkswagen ad that first ran during the 2010 Superbowl.  Paul Cardall is a pianist with an amazing story of survival.  Tedy Bruschi was a linebacker for the New England Patriots who suffered stroke, a result of his CHD.  He was named NFL Comeback Player of the Year in 2005 after his return.  These people are proof that an illness does not have to define your life.  And most recently, Jimmy Kimmel’s newborn baby was born with Tetralogy of Fallot, proving once again that heart disease can affect anyone. And, it doesn’t have to be a heart defect — we all have something that we face.  These stories can inspire us all.

In June 2012, Buddy Media signed a deal to sell to salesforce.com.  I saw the tweets and the headlines in my news feed.  I’ll be honest and say that I didn’t care enough to read the story.  And then a friend sent me this you tube video that Michael Lazerow posted after the signing of the deal .  As my husband and I watched it that night, I realized that this is what I want for Jake.  I want him to never doubt himself.  To know that he can do anything.  And, to never be afraid.