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The Hardest Part of Living with a CHD

Dec 29

Posted by: ACHA
12/29/2011 2:00 PM  RssIcon

By Jon Ritchings, Jr.

Living with a CHD is hard sometimes. We deal with all kinds of issues.

Often we are tired, sore and stressed about surgeries or procedures, in pain from those same surgeries or procedures, and 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 it all 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 just part of my normal, everyday life.

When I must have a procedure, 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 it all is right before I'm wheeled out of my room: It's dealing with my mom.

My mom is awesome and has always been there for me, regardless of what is going on in my life. She's also a worrier. I think all mothers 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 birthday. 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 wherever 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. Moments like that break my heart, and the fact that I can't do anything to prevent them—that is the most difficult moment of dealing with my CHD.

Jon Ritchings, Jr., is a 40-year-old father who was born with pulmonary atresia and hypoplastic right heart syndrome. Although he has made a career in retail, he prefers to be outdoors kayaking and taking photos. Jon likes to draw inspiration from quotes and one of his current favorites is from Lao Tzu: “I have just three things to teach: simplicity, patience, compassion. These three are your greatest treasures.”

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4 comment(s) so far...


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Re: The Hardest Part of Living with a CHD

You are exactly right. We are so used to the procedures, the pain, and the protocol--it is part of living for us. So are hospitals.

But the pain we cause our parents is so much more of a deep heart-break. I've tried to tell them and tried to put it in writing to them that I had led a full life and I am happy and satisfied. We don't go through the pain that they do--it's just our life. But I do tell parents of young children, as I tell my own parents--we don't know a different life, so we embrace it (ok, we complain occasionally). I also want them to know we don't have a lot to fear--and a lot of that is because we know they love us.

Laurie

By Laurie on   12/29/2011 3:51 PM
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Re: The Hardest Part of Living with a CHD

Yes moms worry because we live in fear that we will lose our children. We chose to do something in the first place and we live in fear and guilt that we will/did
Ale mistakes. I lost my Andrew when he was 20 and I still feel like I should have done something different. He so often asked me why I put him thru it all and I still cannot say if he thought it was worth it or not.

By Teresa on   12/29/2011 5:18 PM
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Re: The Hardest Part of Living with a CHD

I agree with your assessment of 'us'. We deal with pain, procedures, surgeries, etc. But it is extremely difficult watching our parents worry, stress, and fret over us. I have to add my daughter into that mix. It breaks my heart to see the worry on her face when I'm not feeling well. But I can't tell her that I'll be alright....because I don't know. I just pray and hope. I can protect my daughter from alot of things, but I cannot shield her from the fact that I could die and leave her all alone (as she puts it). That, my friends, is a pain worse than any physical pain I have ever endured.

By Tammy on   12/29/2011 6:48 PM
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Re: The Hardest Part of Living with a CHD

I read your article about "Finding the Positive in the Negative" and it also linked me to this one. I particularly liked this one cos I read it the night before I was going for a hospital appointment to find out what surgery i actually need next month. I had surgery 22 years ago when i was 14 years old and all the decisions then were made by my parents. Since then I've went to nearly all my check-ups alone until this last one when my girlfriend and parents came with me. Because we live with it, and I'm prepared mentally for what might happen, I assumed my parents were cool with it too. How wrong was I? Your article really hit home and I realised that they are not ok with this. I looked at my dad and he was speechless. I don't think he said a word for about 6 hours after the appointment. I looked at my mum and I saw she was trying to be brave. Then i looked at her hands and she was shaking. I looked back at her eyes, it was then that the tears started.

I guess what I'm trying to say is that CHD is a condition that affects me and I thought that it ONLY affected me. After reading your article and looking into my parents eyes, I now realise that it affects others too. Thank you for opening my eyes and making this aspect a little easier to understand.

By Mark Gallagher on   2/9/2012 3:09 PM

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