Have you ever waited on your child to die? Lately, I am.
While Annie sings and plays happily in her nursery class, I sit anxiously in big church wondering if this is the moment.
While Annie stares blankly out the bedroom window listening for a Monday morning trash truck rumble, I squint to study her face. Is this the moment?
When Annie coughs down a half-chewed goldfish in the backseat, I shake Matt’s arm to announce,”I think this is the moment.”
When Annie sleeps through the entire night in her big girl bed, I rush in at midnight to place my fingers on a scarred chest praying to feel its rise and fall. Is this the moment?
Her care team in Philadelphia discussed Annie’s case in their surgical/transplant conference a few weeks ago. Annie’s cardiologist called to report that the team supports his decision that she cannot have her Fontan surgery. They also agree that she doesn’t need to be on a waiting list for a new heart yet either.
The plan is to wait her out.
Her cardiologist told me that the team made it clear there is no reason to expect Annie’s heart function to ever recover. What’s more likely is that someday (soon?) her sick heart will finally convince her strong body to succumb to sickness, to failure, too.
There is equally no reason to expect that Annie’s heart function won’t recover, he reminded. It’s still a (teeny tiny) possibility that someday (soon?) her strong, fighting, 32-pound body will finally convince her heart to get with it.
We waited her out before, he remembered, and it was worth it. We will wait on her through next spring. We will give her a year, they decided, then retest with a cardiac cath and MRI and make decisions. In the meantime, you’ll know if something changes. You’re her mom, right? he prompted.
Right.Of course. I’m her mom, and I will know because I will listen intently to every breath, I will measure every med, I will check every fingernail for the faintest trace of purple. I will wonder if every moment is the moment. Uhhh. It’s going to be a long year.
So far, I’ve been wrong on every one of those moments. Annie remains happy under a facade of healthy, “running around dying” as a curious onlooker recently put it.
Every time I wonder, Is this the moment? the answer is YES. This is the moment that I get with Annie. This is the moment that we have. This is the moment that matters.
So much of this anxiety weighs on me. I’m tempted to zone out in search for a mindless millisecond that doesn’t find me with my hand in front of Annie’s mouth feeling for hot breath. But I don’t want to waste the time I have by searching for solace in a quiet thought.
I recently read an article a friend wrote where he says, “I hope you’ve done something of value today. You’ve wasted a whole day if you didn’t.” (Check it out here.)
I’m praying that even in these anxious days, God will be my peace, grant me rest, and give me the courage to do something of value with Annie every day. Because I’m wasting too many moments if I didn’t.