Hey Heart Defect! We need to have a talk.
Yeah, you and me – I just wanted to warn you that things are about to get ugly.
I have no idea why you chose me, and for quite a while now you’ve had your way. I’ve been pretty much at your mercy because I did know how to fight back.
I didn’t know that you could fight back. You had me convinced that I was one of just a few people who you picked on, and I just accepted it.
But I’ve learned better, and while you weren’t looking, I started paying attention.
I’ve stopped being the usual, run of the mill, Woe is me! sick guy. I’ve learned how to take care of myself. I learned how my heart is supposed to work, and what you’ve done to it. I’ve learned how it really works. I even read the medical literature. Dad-gum it, that was hard, but I’ve figured most of it out and I’ll Google what I don’t understand.
I’m no longer passive – I am an active, intelligent, involved patient. I don’t just sit quietly and fill my prescriptions; I ask questions, I learn, and I follow up on important things. I do what I have to do to keep you under control. I found a really good Cardiologist, and not only do I have him on my side, I’ve got his partner, a bunch of good nurses, and a whole freakin’ hospital backing me up. Anytime you want to cause trouble, you’re gonna meet my crew. And we ain’t going to fight fair.
And from now on we’re going to be playing by my rules.
Tags: Attitude, CHD, Congenital Heart Defect, Congenital Heart Disease
July 6, 2010 at 8:35 pm |
I was just thinking about this exact thing. I want to teach my baby, Joshua, that he doesn’t have to live his life as a walking CHD. I want to teach him to understand it, fight it, and live life. I was just thinking today about how my husband and I can do this because I have never been through it myself and have no idea what it’s like. I want him to be agressive in his understanding of his heart, and how to best take care of himself. How did you get to this point? What can we as parents do to help him to fully understand what is going on, how can we teach him to become as independent as possible and help him to care for himself and make sure that he has the best care possible. How do we instill in him that his heart condition does not define who he is?
July 6, 2010 at 9:54 pm |
Jill, I’m sending you some links direct to your email.
Steve
July 6, 2010 at 10:27 pm |
i want asher to grow up with an understanding of his heart. right now, though, he’s learning about his nutritional requirements, specifically that he needs to eat and gain weight. i’ve learned everything i can, and i’ve tried to teach him to tell me when he gets dizzy and/or lightheaded, or overly tired, or scared or sad (he now has PTSD on top of it all). he’s learning. it’s slow, since he’s only 3.5, but i figure, if i start now, he’ll learn, and he already lives life the way he chooses and doesn’t let his heart slow him down. he definitely lives on HIS terms, not his heart’s. but thank-you for this post. i’m sharing it on FB.
July 7, 2010 at 1:08 am |
Bravo!!!! Can I print that and frame it for my son to have when he is older.
July 7, 2010 at 5:48 am |
If you want to! (I’m not Norman Rockwell; I doubt the value will go up!)
July 7, 2010 at 9:43 am |
This is a cool rap, Steve.
July 7, 2010 at 9:54 am |
Your blog is just addictive.
July 7, 2010 at 12:00 pm |
*** SMILE **** Love that Attitude…Hope to teach the Zman that as well..
RHonda
July 8, 2010 at 12:25 pm |
And, that’s why you are inspiration to all the CHD children (and adults). You aren’t a victim, you’re a fighter!! And doing an awesome job at it to boot!
July 8, 2010 at 7:56 pm |
I love it! Thanks for your words of truth<3
My daughter is 7 and is waiting on her 4th OHS.
I have always wanted her not to lable herself as a sick heart kid but live in the moment and love the heart God gave her<3