Today you became a mom… not just an ordinary mom… a heart mom. Congratulations! I know that may sound like a strange thing to say when you are handed a baby boy and a diagnosis of a complex congenital heart defect all at the same time. You will feel fear and sadness by the diagnosis but what I want you to feel is hope and joy for what this tiny human will teach you. He will change your life… he will change lives.
The first year will be a rough one. Lots of doctors’ appointments and sleepless night. The big scary word “surgery” will become a part of your daily vocabulary. You will learn to medicate a baby in their sleep. You will know infant CPR and pray you never have to use it. You will struggle to find a sitter because people are nervous around your child. But you will also learn to appreciate the small things… smiles and coos. You will feel so proud of your child for what he can endure and still smile sweetly back at you. You will learn that in that small body there is more strength than you could ever imagine. Don’t forget you have that strength too.
You don’t know this yet but this CHD warrior will teach you patience and grace. It’s hard to imagine anything beyond feedings, medications, doctors and fear. But you will quickly learn that he will do things on his own time and his own way. The sooner you accept that, the better. His persistence will get him through a lot and though it is frustrating it is a trait he needs to survive. (Note to future self… please remember this when he is a teen.)
Just like any kid, he will grow up too fast. He will go to school and you will cry. Partly because that’s what all moms do… also because deep down you feared he wouldn’t live long enough to make it to school. He will play, make friends, lose friends, learn and before you know it he will be a boy. Like a real live funny, spunky, smart, kind and loving boy. Your worry won’t go away… but there will be less of it. Other things about him will consume you. Your heart will swell with pride when you look at him and what he has become.
He will play baseball, basketball and learn to ride a bike. I know looking down at him as a baby you worry that he won’t be all you dreamed he would be. I hope you realize that he is that and so much more. There will be things he cannot do… but the list of what he can do is so much longer please learn to focus on that. When you see him step up to home plate and he gives you a little glance over his shoulder you will fear your hear will stop, not his. Because your baby boy is living and kind of kicking ass at life. Yes he will have to wear a chest plate and you will worry he is going to overheat and you will warn the coaches about his heart and assure them you are not “that mom”, all the while knowing you are. It’s ok… you have earned the right to be “that mom”. You will never stop being “that mom”.
This last part is something you will learn over and over again because of him. You will find a spiritual connection that will give you peace when you need it. He will drag you to the edge and just at the last second bring you back down to reality and assure you all will be ok. This baby will push you farther and test you more than you ever knew possible. Most of all he will give you hope. Hope that even when things are scary you can find light at the end of a day. Hope that healing magic can occur. Hope that there are so many people out there fighting on a daily basis and this boy will allow you to meet them, and they are wonderful. This life isn’t what you wanted for him… but never forget how special he is. Show him his life will be amazing. If you can give back to him half as much as he gives to you… he is a very lucky boy.
Guest Post Written by Erin Burton – Erin’s son, Andrew, has Tetralogy of Fallot and is about to celebrate his 10th birthday. She also has a heart healthy daughter, Lainey, who is 6. They live in West Des Moines, Iowa, and enjoy every bit of their crazy lives! Erin loves to talk about the positive side of a negative diagnosis. Sharing Andrew’s perfectly imperfect story does just that!