Right now, I am sitting in the heart hospital for an echo and a few other tests. As I was walking in, I felt nervous and uneasy. And kind of afraid. My 2 children and I have a severe genetic disorder, and one of the things it causes is cardiomyopathy. We are all at very high risk for it.
I rarely make time for myself, and these types of medical appointments are usually reserved for my kids. Just last week, my 5 year old son had to go for his own echo, where we learned that he is in the early stages of heart failure.
As I walked in and I felt that fear, and uneasiness, I thought of him, and what he must feel every time ha has to go through something like this. I wonder if he feels afraid at all, or just bored. I wondered if he looks to me for strength, a mirror showing him that it’s okay, that he is safe.
Outside of a pediatric location, I’m always one of the youngest patients. At only 27, I know my heart is potentially in very bad shape already. There are 2 older women in here chatting. One is crocheting pot holders, and the other seems keen on learning. I hope one day I can be the older women crocheting in the waiting room.
Something I don’t talk about a lot is my own medical journey. I’ve had well over 10 orthopedic surgeries of my own, and have dealt with a slew of other various medical issues. I have a significant amount of medical related PTSD, and it isn’t minor.
That is what I felt walking into the hospital this morning, changing into the gown, and sitting on the table waiting for them to come in to do tests on me. I felt that same panic, that same fear…everything I’ve been through, everything I’ve felt…it is scary.
I hate that my 2 boys are walking in the footsteps of my own medical nightmare. While I can present a false strength for them, I cannot take away the pain that they may face. I cannot heal there failing bodies with my false facade, nor my own.
I’m sitting here waiting, and my chest doesn’t feel good. It’s hurting, like it’s trying to tell me something. Trying to prepare me for the bad news I know I very well may receive after the day is done.
What’s odd is that I don’t know what’s more devastating, my 5 year old having the early stages of a bad heart, or the thought of me having one, and not being here to help them through it.
As much as I struggle, I know I need to be here for my boys. And the thought of me having something so seriously “wrong” with me that threatens that…it is absolutely terrifying.
I can’t change what is. I know that. But if nothing else, I hope I can remain a face of strength for my boys. A calmness among the chaos.
I’ve been through this. I’m still going through this. Maybe I can help them navigate through their own journey…and teach them that we can’t live in fear of it.
We have to be strong. We don’t have another option.
I hate that I did this to them. That they inherited this gene from me. But I hope, at least, they can learn from me the right way to walk this path, to live this modified life that we have.
I’ve done it the wrong way for years. But I can still teach them the right way.
Stupid fucking BAG3 gene.