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Tips to Achieve Radical Acceptance of Your Baby's Congenital Heart Disease

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If you are reading this, it’s because you and I have something in common. At some point, both of us went into an ultrasound room feeling great and came out sobbing. Your child, like mine, has been diagnosed with a congenital heart disorder.

I’ve been dealing with the reality of my son Malcolm’s diagnoses for almost six years now. When it comes to heart defects, he’s the whole package. Never one to do anything by halves, as I realized during his terrible twos and threes, he came to us with hypoplastic left heart syndrome, double-outlet right ventricle, transposition of the great arteries, and some other fun side issues. In layman’s terms, his left ventricle called in sick, so his pulmonary artery joined up with the right ventricle and played musical chairs with his aorta.

I’ve learned a lot by being a heart mom. I’ve had to. But the most important thing I’ve internalized is the concept of radical acceptance. Primarily a term used in therapy, radical acceptance is simply the act of agreement with reality. It’s being willing to say, “Hey, reality. I see you over there.”

To radically accept your baby’s diagnosis, you must first believe that it is true and cannot be changed. Then you must let go of feelings of unfairness, and what-ifs, and “this can’t be happening.”

You don’t have to be best friends, but you do have to shake hands with the Truth, and agree not to bicker with it. Believe me, more than anything else, your ability to radically accept your child’s situation will inform how both of you handle the first year of life and every year after that.

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Here are my best tips for achieving radical acceptance of a tough diagnosis:

1. Don’t Pick Fights With Reality

It’s tempting, after the first initial shock, to slip into a numbing state of denial or an angry vendetta against the universe. But I advise you not to pick a fight with reality. You will lose, every time. Don’t get me wrong! Reality has nothing against you. It just is what is — a solid brick wall. No matter how many times you throw yourself up against the wall, or try to walk through it like it isn’t there, it won’t budge. It literally can’t. If your goal is to knock down that wall, the only thing you will hurt is yourself. The grief and sadness that go with a new diagnosis are hard enough. Don’t give yourself a concussion or a lacerated kidney in the process.

The easiest way to begin accepting reality is to deeply understand that what’s happening to your child isn’t personal, at least in the way we normally think of it. My son’s left ventricle didn’t just refuse to appear. It isn’t locked in its dressing room until we bring it the right kind of bottled water or a bigger trailer. His pulmonary artery isn’t nursing a bitter grudge against me because I killed its father. Nobody in a black balaclava slipped unnoticed into my womb and took a hole-puncher to Malcolm’s heart, just for kicks and giggles.

Perhaps more importantly, reality isn’t personal in the sense that none of this is anyone’s fault. There is just no version of reality in which Malcolm’s great arteries are upside-down because I ate some bologna (OK, it was a lot of bologna. Don’t judge me). In fact, no amount of cold-cuts, wine, hot-tubbing, horse-back riding, or caffeine could have made his heart grow wonky. And not even a dump truck of folic acid could have prevented him from having a major birth defect. Human development is weird, and almost completely out of our control. Sometimes, organs get plumbed-in incorrectly, or fingers or toes are missing. Sometimes you get the straight-haired model, even though you specifically asked for the curly-haired one. Babies don’t come with invoices. We can’t return them if they’re not in “perfect” condition; we have to take them as-is. Thank God for that. Who among us would be here if perfection was required for life?

I believe that love is the meaning and ultimate goal of the universe, and that makes it easier (though not easy) for me to radically accept all aspects of life, good and bad. But you don’t have to believe in a higher power or a universal order to practice radical acceptance. Just … let reality be what it is. You don’t have to like it, but you don’t need to fight it or ignore it either. Let it be. Respect it for what it is: an immovable fact. The price of non-acceptance is always pain.

2. Acceptance Isn’t The Same As Giving Up

To some people, acceptance of a scary birth defect is the same as indifference or not caring. But that’s not the case at all. Radical acceptance always starts with the acceptance of reality, just as it is. But it does not require you to maintain that reality in its current form! If anything, fully accepting your child’s diagnosis allows you to advocate for them in a more constructive way.

Educating yourself about cardiac anatomy or exploring the medical options available to your family may seem impossible right now. But trust me — in this case, knowledge is power. Understanding what you and your baby are about to go through (and why) will give you a much-needed sense of agency. You didn’t get to choose this path, but you can darn well choose how you walk down it. Don’t be the parent that lays down on the side of the road to die. Your baby does not need you to reenact the Little Match Girl. They need you to run this trail like a boss.

In other words, fully accepting your situation is not enough. You must act on that knowledge. You can’t change what is, but you can always affect what will be for the better.

3. Acceptance Will Come Easier For Your Child

Achieving radical acceptance will be an agonizing process for you, but it’s critical to remember that your child will probably not experience the reality of their situation the same way you do. My son had his first open-heart surgery at three weeks old. He’s five now, and strangely, he doesn’t spend much time reminiscing about the good old weeks, pre-zipper-scar. To him, being short of breath is normal. Scars aren’t even on his radar. X-rays, blood draws, and echos are just his average Tuesday.

Your baby will accept his or her situation fully, right away, no questions asked. Because humans are adaptable. And because toddlers aren’t bothered much by existential crises.

Heart kids are just fine with who they are, thank you very much. They don’t need anyone feeling sorry for them or struggling to accept what, to them, is everyday life. They know how to live gracefully with congenital heart conditions because that is their birthright.

So right now, as you are processing this difficult diagnosis, try not to spend time worrying about your child or their quality of life. Your baby will go through a lot. But they will thrive, developing unusual bravery, compassion, and resilience as a result of the suffering, not in spite of it. Heart kids are the best human beings, period.

Focus all your energy now on how you can radically accept your child’s congenital heart defect. Once you make peace with what is, you will be more able to positively affect what will be. What your baby needs more than anything is a parent with her head in the game. Radical acceptance isn’t easy, but it is worth achieving.

Photo submitted by contributor.

Originally published: November 10, 2020
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