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.  



It’s 4am on a Sunday Morning and I have just finished hooking up the last (can’t believe I was able to use that word!) of 294 doses of IV antibiotics. 

I’m a Heart Mom and proud of it. I knew it would be difficult from the moment I heard the words “serious heart defect” on that dreadful day. I knew challenges would face us. But none of those challenges can you really prepare yourself for. 

I was asked a couple weeks ago by a man I had only known for maybe 6 weeks (whom I met the week before the blood infection appeared that started the antibiotics) why I always look like I’m going to cry. 

Initially I told him it was RBF (if you don’t know google it). And I was offended. How dare someone I hardly know ask me that? Do I really look that way? And I found myself asking everyone else around that night, if they thought the same. 

It wasn’t until the next day when I stopped to think. I wasn’t offended at all. What he said was spot on. Truly my emotions have been in about a gazillion different places the past year. They have changed. At the drop of a dime I COULD cry. I feel things harder. I love things more. I empathize with my fellow heart moms. I read a story on a baby with CHD and all of those emotions flood in and I can’t stop them. The other night I watched one of my favorite shows and there was a baby with CHD who had HLHS, a dear friend of ours has that. And I cried. 

Besides the past year I’ve been through, I haven’t slept more than a 2 hour increment (2 hours may be a stretch) in 6 weeks! That’s fully functioning taking care of a medically challenged, horribly teething, nursing all night on top of it, dare devil of a little boy. Working a full time job (which is way more challenging then one would think) and taking care of one 4 year old whose past year hasn’t exactly been a bucket of candy (although that’s all she wants to eat!). That doesn’t include laundry, cleaning, dishes, groceries (of which I currently can do none because I haven’t made it to the store, so we have no laundry detergent, no dish soap, no toilet paper, and we are down to 3 Kleenex (that aren’t hiding under someone’s bed) and one roll of paper towels). ***I would not trade a single piece of any of this, I am growing as a mom, person, and friend; but I’m entitled to complain occasionally, let’s just get that straight*** 

When asked why I always look like I’m going to cry, how I should’ve responded was, “go read my son’s caring bridge”, “go read my blog”, “search #iwearredforcharlie”. (That’s one of those loaded answers you don’t want to throw at someone so you say something else.) If I replied any of those ways you  wouldn’t question why I look that way. You would understand. And you would know that when I do smile, it’s completely genuine. 

So now, it’s been a half hour and I am going to shut off the 294th and last IV medication. And I’m going to cry. Because I’m tired, I’m sad it ever happened, and my favorite reason to cry, because I’m so extremely happy to put it behind us and I’m so proud of that little boy for dealing with it. 

And then, I’m going to sleep.