Some Days Are Hard (CHD style)

Y'all, some days, having a congenital heart defect (CHD) is hard! Most days it's not an issue. I know what my body needs and how to take care of myself. After all, I've had it all my life. But today...today was hard!

I've noticed two terms floating around the CHD community: survivor and warrior. I'll be honest, I consider myself a warrior. I didn't survive this defect; I was made a warrior by this defect. I literally fought for my life twice on the operating table as a child. I didn't survive those surgeries; I was strengthened by them! I fight every damn day for my health and fitness. I fought to have the birth that I wanted. I fight to keep anxiety at bay if my thoughts wonder to what could happen if something goes wrong.

Like a warrior, I make sacrifices every day: some big, some small, most things that heart healthy people don't have to consider. I made the decision (along with my husband, of course) that having a second child is not worth the risk to my heart and my health. I want to be an active, healthy parent to the active, heart healthy daughter that we have. This is absolutely the right choice for us, but it is not always easy. I limit my coffee consumption, so I don't overstimulate my heart. I limit my alcohol consumption (and typically avoid it), because it's just not healthy for the heart. I stay away from the most basic pain medication, because there are studies that contraindicate them for someone with a defect like mine. I really pace myself when starting new workout programs, because I can get awful exercise-induced headaches if I go all out right away (no time for that as a mom! plus they hurt!). I'm careful about getting into situations where I get overheated, too hungry, or too cold, because my heart just can't deal with those extremes while still getting blood to all the places it needs to be.

I share all of these things, not to complain, but to share what I think is my strength. Like I said earlier, I've lived with this defect all my life. It's par for the course, and I think it forces me to be healthier than I would otherwise. Having a heart defect can be a real gift. I have to know my body. I have to work with my body. It's kind of amazing to know all of the things my body can do, because I've been tested and I've come out of each test feeling stronger and more aware than before.

So if it's this gift, if I see myself as this strong warrior; why was today hard? Well, I let someone in, and all they could see was weakness. I have fought so hard, but some people just can't see past their own fear. Their mind closes to the possibility that you can't hack it. That they may be responsible for you failing. And while I know it's not my issue, it hurt! Today, it hurt!

Then, after I let the hurt wash over me and leave, I felt anger at the presumptuousness! Ugh! Then, I texted my best friend (we're both introverts, that's how we roll!) and drank coffee to get back to my positive place. But I wanted to share these feelings, I guess as an awareness post during heart month. To reach out to other heart warriors, and say, hey, I feel you! To reach out to people that don't live every day with a health issue to say, this is what it's like. This is why us CHDers go wild with CHD awareness posts every February! LOL! And maybe to process and to share my own perspective on a difficult situation.

I'll tell you one thing I've gained from this experience though. I'm damn grateful for the people who look at me and see my strength! The dear people in my life that allow me to struggle without viewing it as a weakness, because they see the fight in me. They allow this warrior to keep my dignity, even when I lose a battle. I so love those people in my tribe and appreciate them all the more on days like these! <3