The Hardest Thing I Do…

My Mom

Living with a CHD is hard sometimes. We deal with all kinds of issues. Often we are tired, sore, stressed about surgeries or procedures, in pain from those same surgeries or procedures, recovering while knowing that everything we went through is just a patch and that we will have to have another procedure somewhere down the line.  It’s tough and at times feels impossible.

For me the worst part of all of it, is not all the medical stuff. I can deal with that, it’s hard sometimes, but I’m used to it. I put my head down and bull my way through the bad days. I can push through pain and fatigue better than most people I know, I should be able to, I’ve had enough practice at it. For me that’s part of my normal everyday life. When I must have something done I just schedule it in and have it done. It doesn’t bother me that I have to go through these things, and I don’t stress over them. Maybe it’s my sense of humor, but I have fun when I have to spend time in a hospital.

For me the worst part of all of it, is right before I’m wheeled out of my room.  It’s dealing with my Mom. She is awesome and has always been there for me regardless or what is going on in my life. She’s also a worrier, I think all Mother’s are. I turned 40 this year and she threw a surprise party for me. At the party she gave a little speech and she mentioned that they thought I wasn’t going to make it to my 40th. I thought she was going to burst into tears. Even that isn’t bad compared to the look of fear in her eyes every time they roll me out of my room, on my way to another procedure or surgery. I don’t want her to worry about me. I don’t want her to have to live with the fear that I might not come back from where ever it is they are taking me. I also know that there is nothing I can say or do that will stop the worry and fear. Its break my heart moments like that and the fact that I can’t do anything to prevent them, that is the most difficult moments of dealing with my CHD.


About jonmrjr

I am a 40 year old survivor of Congenital Heart Defects or CHD for short. This is not another blog about how I survived a heart attack. Congenital means born with. I have lived with this my whole life, as have many others. 1 in 125 babies are born with a CHD, it is the number one birth defect in the world. World wide it kills more children than all childhood Cancers combined. This is my story and how I live with CHD. My hope is to bring awareness to this condition and inspire others to chase their dreams as I do.

Posted on November 27, 2011, in Uncategorized. Bookmark the permalink. Leave a comment.

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