Field Manual: The Last Word

The Final Word About Raising a Heart Warrior

Always, always, ALWAYS, consult your doctor with your questions, fears, etc. If your doctor is not supportive of your need to understand what is happening, find one who is.

I use a triage mechanism with both of my kids – is he/she peeing, pooping, sleeping, able to wake up, able to cry, able to stop crying, responding to my voice, and not running a fever? If the answer to all of these things is yes, then I calm myself down and call the regular nurse line either at the pediatrician or cardiologist’s office for advice. I the answer is no, I’d go to the ER, and I have gone to the ER for both of my kids at least once. Each time I was right to go, and if if I was wrong, better safe than tragically distraught. If you need more than my guidelines, you do what’s right for you.

This book is my gift to every mom who faced down the threat of death to her child and wished she didn’t have to be as strong as she is. This book is my gift to every scared parent who thinks he or she is crazy; you are not crazy. This book is the book I wish I had had when Liam was still inside me to teach me what I learned the hard way. So here are my final lessons, Heart Moms and Dads, the rest is up to you.

  • It’s not going to be easy, but will be beautiful.
  • This is not your fault and you are not being punished.
  • Grieve for what you’ve lost; it’s ok and it’s healthy. You have lost so much and it will take time to see what you’ve gained.
  • You have every right to be afraid, this is scary, but you don’t get to decide, so let go of trying to control the situation and the fear won’t be as bad.
  • It’s OK to cry and it doesn’t mean you’re weak.
  • You will find the strength to get through this.
  • Your friends and family will surprise you.
  • You will laugh again, you will be happy again, you will smile again, but no I’m sorry, you can never be the same as you were before this happened.
  • No matter what happens, it is all worth it.


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