Heartache in Heartland

Watching my own heart warrior fight for her life with every fleeting breath is hard enough. But put me (or any heart parent) in a CICU surrounded by 100 frail babies and mommas doing the same thing and that is a lot–too much at times–to be part of.

As hard as it is, it’s my only hope for personal survival. Because once you’re a heart mom, you’re immediately different from everyone else you’ve ever known. Even if the day before your child’s diagnosis you had every single thing in common with your best friend since birth, trust me, you don’t anymore.

So you form relationships with others in the trenches. Those relationships are valuable but they’re also painful. Because once you’ve befriended the mother of the baby across the pod from you, you’re rooting for her baby too. When that baby is still there when you return six weeks later, you pray even harder and more frequently for healing. And when that precious life passes after you’ve hugged the mother that morning, you weep too. Every heart mom knows that it could’ve been, and could still always be, you. The code blue tweeters might announce your baby’s bed next. The tear-stained doctors’ faces might be over your news tomorrow. The rare and unheard of adverse reaction could be your child’s in a few short years.

This is a burden that we heart families do not carry alone. It’s also a burden that isn’t quickly lightened when your child is the one who recovered well. I’m happy to say that Annie is doing great in the two weeks since surgery. She is back to her happy, social self. She is totally off pain meds. Her sats are a comfortable 85. And we don’t have to take her for a cardiology check up for another whole month!  All great news to celebrate!

But sometimes it doesn’t seem right. How can I be coordinating babysitting so that we can attend a wedding, when last week we were deciding what food to order in to Annie’s recovery room? It doesn’t seem fair when I picture the families who I know are still there wondering how many more times they can eat Jimmy John’s or Potbelly’s, when I see on their Facebook page that their child is still fighting desperately for his life, when we’ve seen three babies pass in the months of June and July. These are haunting realities for real families, real families who we are real friends with now. And at times we’ve been that family, hoping against hope to get back to any version of normalcy.

Four months in survival mode, living the dark horrors of those hallways changed me. The truth of the continuous instability that comes with Annie’s diagnosis changed me. In some ways for good because now I know the sacredness of each second. In some ways for bad because I’ve found myself in a PTSD-like haze somewhere between CHOP terror and the pleasantries of Marlowe Manor park play dates. Truth is recently I cannot remember some names that match familiar faces or even my zipcode anymore.

But precious families who are a few miles ahead of us on this journey have assured me that the nightly ghost sound of monitor beeps will grow fainter. The sting of hospital loss can be intentionally traded for the celebration of our everyday routine. And that I’ll become myself again. Not the self I was before who lived without compassion, who felt comfortable with only a mindless conversation, or who took things for granted. But I can be my new self. Who cherishes all kinds of frenzied moments because they are at least mine to be had, who is intentional in every setting with every person, and who knows what it’s like to have been sustained through the valley of the shadow of death.

I will be someone who, instead of sadly mourns for the families still there, encourages my family and my girls to live fully the days that we have in honor of those who may never get to.

Annie is living it up in the swing!

Annie is living it up in the swing!

My girls love each other.

My girls love each other.

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