I’ve been working with Children’s Hospital Colorado and University of Colorado Hospital on writing content for a new website and doing interviews with parents, teens, coaches and doctors on their experiences. The stories are really personal and heartfelt (of course they are), but what I’ve found is that time and time again from coaches to parents, they all want to hear real stories. They appreciate research and the medical lingo, but what they really want is to hear what another parent went through. They want to hear their experience and what it’s really like to live the life of what they are (or will be) going through.
The emotions involved, the reality – I can relate… but again I can’t. Everyone has their own story, everyone has their own condition/disorder that they are dealing with, and that is what makes us all unique. I can only speak for congenital bilateral perisylvian syndrome, but I appreciate, so much more, the things that each and every one of us may deal with throughout life when it comes to our children.
I couldn’t imagine giving birth to a baby with a condition where they must have surgery within 72 hours of birth, things like hypoplastic left heart syndrome or congenital diaphragmatic hernia. These parents are told during their pregnancy that they should give up, that they should end their pregnancy, but it is places like Children’s Hospital Colorado and University of Colorado Hospital that gives them hope and helps their babies once they’re born… and most importantly, helps those babies survive. I couldn’t imagine going through that; going through those first few weeks of life (first few hours of life) wondering if your baby will be with you for longer than that.
I struggle with dealing with Max’s reality, and I live everyday making sure that Max has the best life he can have, but I also have to remember that this is life. There are others out there that don’t get to see their children grow up to be Max’s age. They don’t have to deal with the same struggles we do, but they would kill to deal with ANY struggle with their child.
I’m grateful. I’m grateful for Max, for what he’s taught me and for what I can teach him. I’m also grateful for all of the parents, teens, coaches and doctors that I’ve talked to along the way for reminding me that this world is so much bigger than just Max and I.