Feeling “Right” as a Heart Mom

I’ve contemplated all day today the right words, the right feelings, the right anything. These days there’s very little that seems “right”. 

Today marks one year since we were given Charlie’s diagnoses. A video that plays in my mind most often, “your son has a serious heart defect”, spoken so kindly by the Cardiologist. We squeezed Charlie tighter and tears began to flow.  He proceeded to draw us a picture of his defect, mitral stenosis, as we awaited a room on the cardiovascular intensive care unit. 

At this time one year ago we were waiting down the hall as they inserted his first of many IVs. We were learning about the CV unit for the first time. We were learning about a world full of broken hearts, lines, monitors, beeping, medications, saturations, blood pressures, heart rates, plastic couches, shared showers, and commercial coffee. We were learning about our child. 

This past year was both long and short. The parts we wanted to be over took forever and the moments we could’ve stayed in forever disappeared in the blink of an eye. We made amazing friends that feel more like family. We have celebrated accomplishments and we’ve suffered defeats. We have grown in our faith. And with God’s help we have pushed on every time. 

In this past year of being a heart mom I have felt myself hit every emotion on the scale. I’ve hit highs and I’ve hit lows. During each of our three extended stays this year I had a different mood.  I started with terrified, shocked, and eager to learn, I moved on to angry and depressed, and the last stay I evolved into motivated, ready to advocate, and optimistic. Most days I’m still in that last stage of motivated and optimistic, and I’m always ready to advocate. But there are always days when I just absolutely can’t. 

Today I hit a wall (reasons outside of Charlie were not in my favor either). I left my first home visit at work and I sat on the curb by my car, and I cried. Every emotion of this year swallowed me up in one big gulp and I couldn’t fight it. And then I got in my car and I cried some more. As I sat in the drivers seat I looked for a sign that it would be ok. I looked out the window, I looked in the mirror, I looked everywhere, and then as I reached for a Kleenex in my purse, I found it. My sign was right there in the form of a red farmer hanky, with the writing L. Menk on the corner.

That’s when I thought to everything my Papa taught me and everything he wanted for me. And the things that stood out were stubborn will and strength. He gave me those, they’re not going anywhere. And today he reminded me of those, my two most powerful attributes. 

This year in and out of the hospital has been intense. We’ve beat three open heart surgeries (one that was a first for our hospital), one general surgery, an emergency life saving intubation, several withdrawals, a collapsing lung, a blood infection, asthma, more respiratory illnesses then I can count, and so many other things. None of those things ever felt “right”. 

Tonight I sit holding my sweet (though oh so cranky from teething) baby. Usually while I hold him I assess his breathing, his click, and his heart rate; tonight I’m just holding him as him. I’m watching his sweet eyes flutter, his hands twitch, and his toes wiggle as he sleeps. And that feels right.  


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