To the Families of Children With Severe Congenital Heart Defects

We might not say it. Maybe we can’t. Maybe we desperately want to, but (rational or not) admitting it to you can feel like letting down the guard we have put so tightly in place — a guard that helps us stay upright most of the time. That air of confidence we wear like a suit of armor… it’s not as impervious as we would like you to think.

We need your help. We need your love. We need your acceptance. We need you.

We have a lot of challenges behind us and ahead of us. We are new(ish) parents with a child who is as flawless as her heart is flawed, and we don’t always feel confident in the choices we make for our family. We agonize over everything. Many decisions literally have us on the verge of tears or war depending on the issue in question. Or minds swirl relentlessly with questions and anxieties. Did she eat enough today? Is it OK to let her run like that? Should we go to the birthday party? I think one of the kids was sick last week, so how long should we wait before we let her play with them again? Did I sanitize that before she touched it? She has a cough. Is it a respiratory infection or did she just drink her juice too fast? This is often what goes through our brains. 

So what does this have to do with you? Everything. Because every time someone questions our decision or even outright says we made the wrong choice, it pours salt into our own self-inflicted wounds. Every time someone receives a turned-down invitation and follows up with anger or displeasure, it creates new worries and anxieties, and we have so many of those already. We are parents doing the best we can, and your support, trust and love can be a massive relief, the magnitude of which cannot be described by my mere words.

You hold an impressive power. You have the ability to manifest a positive change in our lives and in the life of our children. Our love and respect for you is what makes your every word so weighted, so impactful. A friendly phone call, a supportive hug, an understanding text when we can’t make it to a function — positivity from you in any small way can mean the difference between hours of second-guessing and overanalyzing our every move, making more time for joy and love.

We need your help. Our daughter needs it, too. And I think you need ours, so let’s help one another. We can do this alone, or we can do it surrounded in acceptance and love — something we all deserve.