Thursday, January 13, 2011

Seven years of reality

Seven years ago, I had no idea how my life, my reality, would change.  This amazing little boy with the cutest blue eyes immediately stole my heart and changed my view on the world in an instant.  And if that wasn't enough, he keeps teaching me and changing my views over and over again. 

My First Born was born with a bicuspid aortic valve.  When the cardiologist told us to take him home and treat him like a normal child, I was like, yeah right.  I'm scared to death as it is and now you're telling me he has a congenital heart defect!  However, we did just that.  Yes, we took him to his cardio check up appointments and when we thought about it, it was super scary but for the most part I was able to kinda push it to the back of my mind and not focus on it every day.  This was how I coped with the fear.

Then in 2007, on Husband's 30th birthday, he had his first open heart surgery.  The surgeon made his aortic valve a better functioning valve.  This procedure was supposed to give him more time with his own anatomy and allow him to grow more.  The plan was to eventually perform the Ross Procedure where they put his pulmonary valve in place of his aortic valve and then use donor tissue for his pulmonary valve.  You don't need a really awesome pulmonary valve because it just pumps blood to your lungs, but your aortic pumps blood to your whole body so it has to be kick ass and in good shape and not clunky or leaky, like his was when he was born.  On that surgery day, and the recovery days following, I have never been more afraid in my entire life. 

Then we entered another phase of his life.  School.  Not only did he have a heart defect, the poor guy also has ADHD and is possibly on the Autism spectrum.  He's had trouble with every daycare and his first school when he started Kindergarten.   Everyone expected him to get better or for us to say some magic words to get him to behave at daycare or school.  It just wasn't going to happen over night.  From our trials with the daycares and his first school, I learned not to judge other people, and parents especially.  I learned that I have to fight for my kids and seek out all the knowledge and help I can to get them whatever they need.  Finally, we moved him to a public school that was more than willing to help him succeed and he is doing it.  Now instead of mostly "red" days, we have mostly "green" days.

Last year, on April 12th, FB had another open heart surgery.  The repair on his aortic valve wasn't growing with him and working for him like we expected.  He needed another surgery.  The plan was to build him a new aortic valve out of his pericardial tissue.  His surgeons are the best and we were confident going into surgery that everything would work out as planned.  You'd think by now, we'd know better.  Plans, schmans...with this kid, no way!  He ended up getting a mechanical aortic valve implanted.  They were, however, able to implant an adult size valve which should mean no more surgeries. 

After seven years of raising this amazing, intelligent, caring, sweet and remarkable boy, I have been through so much.  WE have been through so much.  We also have a different reality than most parents.  Most kids get the occasional cough or virus.  Most kids don't have 2 open heart surgeries before they even get through Kindergarten. 

He has taught me patience, perseverance, love, acceptance and so much more in his short seven years.  I am truly a better person because of him and definitely a better Mom.  If all of this had been easy, I would not be the person I am today.  I know it.

Here's to you, my sweet, sweet boy on your seventh birthday.  Mommy loves you more than you'll ever know and I cannot wait to learn more from you.


  1. Oh my gosh. That is a lot to bear. What a brave little boy (and Mom). And yes - I feel the same way about my special needs boy. He's made me a better person. I rarely judge anyone before knowing the whole story. I owe a lot to my boy.

  2. Wow, what an incredible story! I'm so sorry you've been through it, but as the mother of an ADHD 7-year-old boy with a bicuspid heart valve, am I ever happy to meet you both!!

  3. What a lovely, amazing post.

    Wishing you and your family a new year filled with nothing but peace and joy.

    :-) Anna