Tomorrow morning will be February 9, 2013.  On February 9, 2005, at 7:00 am we were bringing Liam to preop for what we believed would be his last open heart surgery.  Our faith was shaken on preop day when our surgeon told us he couldn’t make out from multiple heart catherizations, an MRI, and countless echocardiograms why Liam’s pulmonary branch arteries were so small and, subsequently, the pressures in his lungs so high.  He would know when he got inside our son, so there was Plan A – go ahead and finish the surgical course or Plan B – Punt!

At 7:00 am tomorrow morning, I will be in my car on my way to one of many charity fundraisers I do to fight the thing that wants to kill my child.  Make no doubt about it Congenital Heart Disease is a mass murderer, and it’s tried to take my son three times.  Tomorrow, unlike in 2005 when I sat in a waiting room to learn the surgeon went with Plan B, I will sit in a Senior Center collecting a war chest or one dollar at a time in a tiny aluminum cash box from silent auction items and door prize drawings.  I might not look like a warrior, but as I serve pizza to our scrap-booking guests, I’m building the future, penny by penny to stop the killer that still stalks my son.

February 9, 2005 was they day of Plan B, the thud that made Liam’s third open heart surgery not his last, but his middle.  It’s the hinge between five bone sawing surgeries that literally unhinged my child’s body.  It’s the middle, for now, but it’s not the end.  Today, eight years ago, was the slap in Jim’s and my face that Liam’s half-heart is a forever situation, not a fixable one.  It’s a chronic and life-threatening truth.  That truth was as brutal as it was refreshing.  We could stop anticipating the end of interventions, because there was no end to it, at least not one we would accept.  And so we march.

I’m going to share a book excerpt from Heart Warriors, A Family Faces Congenital Heart Disease, about what we did on the night of February 9, 2005, and after that share a contrast with what I expect to do tomorrow night on the Ninth of February.

This surgery was supposed to be Liam’s final surgery. It was supposed to be the Fontan. It became known at home as the Glenn-Again, it was the Fon-tempt.

We were ready for Liam’s inferior vena cava to catch up with his superior brother at the pulmonary branch. We had every expectation of finishing the third stage, but it was not meant to be. You would think I’d have learned about managing my expectations. Alas, this expectation was pinned on the advice of highly-qualified doctors.

So, I call it the Fon-tempt because it was a Fontan that was attempted but failed and became the Glenn-Again. The Glenn surgery was essentially redone to make way for the real Fontan of the future and keep Liam alive long enough to recover and grow strong enough to do it one more time. Disappointed is one word for how we felt.

When we first saw Liam after the surgery I felt like the wickedest woman on earth. After his DKS he was waxy and white and swollen, intubated, and entirely unconscious. After his Glenn he was bright purple, and swollen, intubated, and entirely unconscious. After the Fon-tempt, he was Liam, almost two, and wide-awake with an angry tube up his nose and down his throat.

Liam looked at me pleadingly with tears running down the side of his face and cracking through the pasty mask of dried skin. He mouthed, “Mommy” while reaching up through his Betadine cloud for a mother who could not hold him. His body shook with his weeping, and I saw his convulsing caused his newly bound sternum to quiver in pain. I felt faint, and it took everything I had not to cry in front of Liam. His tears were enough for the three of us.

The nurses told us to leave so they could sedate him— it was no good for him to be like that so soon after surgery. Mercifully, the drugs separated us, and we each hid on our sides of the fence that survival had necessitated. God, I never wanted to hold my child as much as that moment he cried that silent Mommy.

Tomorrow night, we will probably eat dinner at our favorite Vietnamese restaurant after the fundraiser, the four of us.  We will see the familiar faces who’ve welcomed us since before I was ever pregnant, before I knew how different my life and our lives would be.

They don’t know about Liam’s heart.  All they know is that Liam loves Sesame Chicken, Crystal Rolls with Peanut Sauce, and Fortune Cookies. The bottom of Liam’s lunch box and a bank in his room are full of fortunes he’s saved from cookies over the years.  They tell of a future as mystic and unforeseeable as any of ours.  But Liam has a future, and I will work my ass off to raise awareness, to raise research dollars, to change legislation, and to do whatever I can to preserve and improve Liam’s chances of writing his own story on his own terms.

Until that day comes, I’ll sit next to him in a restaurant booth and serve up peanut sauce while he tries to balance a soup spoon on his nose. I rejoice in these moments because, even  as uncertainty lurks around every corner, we do have a future and we have already found great fortune in our lives.