The Hero we Forget About

First, a couple of announcements: There is going to be a Q and A session for Adults with Congenital Heart Defects held in New York City on November 11, 2008 at 6:00 PM. Dr. Ralph Mosca is the speaker, and the subject is “Surgery and Adult Congenital Heart Disease”. The event will be held at the New York Presbyterian Hospital/Columbia University Medical Center Milstein Building, 7th Floor – Rm 213 (Reemstma Conference Room), 177 Fort Washington Avenue, New York, NY 10032. You need to RSVP – email if you intend to come (You can also e-mail questions for Dr. Mosca to this address) and they ask that everyone attending please bring a snack to share, if at all possible.

The CHD Blog has more on Lobby Day 2009, the National Congenital Heart Coalition, and the SEVEN groups that have united to form the Coalition. Is your CHD Support group part of the Coalition? No? Why Not? The CHD Blog also gives you a link to follow if you want to attend Lobby Day.

And some very sad late news: Senator Dick Durbin’s daughter has passed away. She was 40 years old and born with a Congenital Heart Defect. But for some good news, Katie is hanging in there and improving!

I keep telling you how special Heart Moms are, it is true! Every word of it! People like Katie’s mom and Colby’s mom expected to be out teaching their kids the things that a growing child needs to know (don’t touch a hot stove, don’t drink that, and don’t try to give the cat a bath!) not sitting in a hospital somewhere. But life isn’t fair. And to their credit, they hide the tears and keep on keepin’ on. Not many people realize that a heart defect breaks three hearts… the Cardiac Kid’s, Mom’s… and especially Dad’s.

They are rarely mentioned, but Heart Dads suffer, too. The man is supposed to be the Protector and Defender of his family. But how do you fight something like this? The answers are maddeningly vague: “As best you can”, and “One day at a time.” That’s almost not an answer. And we’re supposed to have all the answers. Breaking down in tears and shouting “I just don’t know what to DO!” isn’t an acceptable response. So we bite it back, and it eats at us.

And there is no such thing as a normal activity with a Cardiac Kid. Katie’s dad has written of his simple desire to kick a ball with his daughter. And you have to trust other people with your child’s life. For a guy, that’s especially hard to do. Take my child away and cut on him or her? No way. That’s why the men seem to be having the most difficult time in the Surgical Waiting Rooms. Fixing the problem is our job, real men don’t leave the work to someone else.

No. A real man understands that as much as he wants to correct this situation himself and make everything all better, he can’t do it. He might be able to fix the broken heart that occurs after that first crush goes sour, but this is beyond him. So he does the only thing he can: Find someone who knows how to make things better.

If the problem can’t be fixed, at least give us a chance to fight another day. Because we will go to the wall for our family.

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