Pre-Fontan Illusion

Right now, we are in Black Butte, OR. Laney is napping. Luke is watching the Lorax and my loves-to-shop husband went into town to look around. We spent the morning at the pool and Luke braved the big slide.

Five years ago this week, we were in the Cardiac ICU, at the start of our recovery from Luke's second open-heart surgery, the Glenn. Five years ago, we spent 26 days in the hospital, having to send Luke back to the O.R. to stitch down his paralyzed diaphragm. There is so much of me that is grateful we've had such a long reprieve from surgical intervention, and that Luke's heart has been strong enough to delay the Fontan as much as we have. But it's been five years and I don't know how to enter back into that intensity. I'm calling this place we're in, where the dust from the Glenn has settled and our lives have been stable for a long time (so stable a little girl joined our family!) the pre-Fontan Illusion.

It's not a delusion. I know Luke needs the Fontan. I know his heart is missing a ventricle. It is never far from my mind that he breathes harder than other kids, takes more breaks, and needs to take daily medication. But the intensity of surgery and the months following has lightened. Our conversations don't revolve around Luke's heart anymore. I forget to make him was his hands and when his nose gets runny, I think more about possible lack of sleep than his heart getting sick.

Does it punch me in the stomach sometimes still? Yes. Do I wish his heart were whole and worry about the unique challenges he faces as a kid with a medical condition? Of course. Do I still wrestle with envy and doubt? No doubt. But we have put in some hard work in the past five years to process and begin to heal from the fire of Luke's diagnosis and first year of life.

In this state of stability, it is incredibly difficult to wrap my brain around entering back into the world of ventilators and chest tubes and IV's and morphine. I start to panic, realizing I have no idea how to do that again. I think, "Maybe it would have been better if Luke had had the Fontan at three ..." But you know what that thinking shows? That I want to be in control, that I know best. I hear God whisper, "Trust Me." I feel Him tap my heart, reminding me that He will give strength and courage when it is needed. Not before. In the "before", I need to love my son, love my family and love God.

We have been talking a lot to Luke about courage, and praying each night that God would give him a courageous heart as he enters the big, wide world of grade school. Because, we tell him, we can't defeat fear on our own.

I pray as I pray that over him, it will sink deeper into my heart as well.

So we can live fully in this season and go back to the pool to hit the slide bravely again.