Dear Jimmy and Molly,
This is an extremely reluctant welcome letter, from one congenital heart defect parent to another.
This is not a “Welcome to the Club” letter, for that is far too flippant for the seriousness of what you are facing. Indeed, my heart aches for both of you as I recognize all too intimately what you are facing.
It seems better to say, “I’m sorry” rather than “welcome;” yet, I can’t bring myself to say that. Yes, I am sorry for what you have been through and will continue to face. I’m sorry that your precious boy has that jagged scar on his chest that will be opened again and again to correct a problem you didn’t ask for and didn’t invite.
You have unwillingly entered a new world, as you well know.
In this world, you will become almost friendly with the multitude of cardiac professionals who know your child inside and out, literally. These folks will become an extended family as they celebrate milestones, worry over abnormalities, and watch your family grow, change, and transform.
In this world, you will memorize the sound of your child’s normal breathing patterns and even the slightest change will jolt you out of a deep sleep.
In this world, asking your partner “do his lips look blue” will become a normal question.
In this world, you will grapple with things that most parents don’t ever think about, such as your child’s mortality, your sanity, and your ability to face the unthinkable.
In this world, you will question everything you thought to be true and wonder which ideas you believe in actually hold water.
In this world, you will reach your breaking point, and just when you think you can go no further, you will find deep wells of strength you didn’t know existed.
In this world, you will feel helpless as you watch your son get poked for what seems like the millionth time and you will wish you could take his pain from him. You will know the powerlessness that comes with handing your child off to a surgeon, hoping he will return to you, and aware of the possibility that he won’t.
In this world, you will become achingly familiar with bittersweet feelings.
In this world, you are in good company; there are many parents just like you who have faced the unthinkable.
We know that this world is not a destination we chose, and yet, we are grateful to be here because we know the gift that comes with it.
In this world, you will love more deeply and will eventually see the world through eyes of appreciation.
In this world, the small things we often take for granted will be celebrated because you know that each day is truly a miracle.
In this world, the petty things that used to bother you will cease to matter.
In this world, your heart will break countless times and each time, will come together bigger and more expansive.
In this world, you will be a fierce advocate and staunch supporter.
In this world, you will slow down and pause to enjoy the smell of the rain, the flowers blooming, and the light in your children’s eyes.
In this world, you are amongst some of the everyday heroes who carry the weight of the world on their shoulders, and yet manage to smile from their soul.
With all that said: Welcome to this world, Jimmy and Molly. I know it’s not what you would have chosen, given the option, but you are now a part of the global family of folks whose lives have been altered by congenital heart defects. It’s a long road and often harrowing, but we have been where you are and we can tell you that you’ll get through this.
I know, because I’ve been there too.
I’m rooting for your family.
Author: Lisa Vallejos, PhD
Editor: Nicole Cameron