Through the course of this whole heart journey with Logan I have always had other mothers who allowed me to lean on them, ask questions or even just share a snack in the waiting room. We would share our stories, usually the bad stuff first, and then we would smile hopefully and spread the new positive happenings with regards to our kids in the CVICU. I love the relationships I formed in the hospital – parents were too worn out and fearful to put on airs and shared raw and honestly together. You bond quickly and remember each other always. There are a few things that I wasn’t prepared for in the CHD world - and as a veteran mom who is always meeting new heart parents, I want to write them down.
1.) Even if you’ve never met a family in person, you can love their kids. I follow a little boy named Owen (Simmons Family) through the blogosphere and you’d think I knew him. I love this kid and I stress over his appointments and I have no explanation for it. I’m attached to so many families who have no clue that I read along and pray daily for them.
2.) If you are in the CHD world for any length of time, you’ll know a child who loses their battle with CHD. I am a realist and know that it is going to happen, but it still hurts me to my core. I’ve spent many nights crawling into bed with Logan just crying and holding on to him for dear life.
3.) Being a parent of a CHD child will either make or break your faith and the same goes for your marriage. It will also scare friends away, change your entire perspective on life and broaden your mind. Empathy is a powerful thing.
4.) Advocate parents can be powerful, but they can also be toxic. We tend to force the heart mom/dad bond and pretend to support each other only to have petty issues and egos ruin everything. You might like these people, or even want to be friends with them, but you should just save yourself the trouble & surround yourself with positive people who have good intentions.
5.) It only takes one person to make a difference. Your child will touch (and change) so many more lives than you will ever know.
So true. You guys have been through so much more with Logan than we have with Hope, but its scary all the same. We have met some wonderful friends in the CHD world. I cannot imagine going through what we've been through and not had them to lean on. I pray for continued good health for Logan- he is an absolute doll! Weird to think that we met playing bunko and our journey with Hope was just beginning and you had yet to conceive Logan. Who knew we would eventually have this in common.
~Laura