2 Years of CHD | Happy Anniversary, I Guess.

April 17, 2019. I’ll never forget that night sitting in an unfamiliar doctor’s office. Our world came to a screeching, horrifying halt as the doctor said, “there’s something wrong with your baby’s heart.” I blinked and two years flew by. It’s strange to think of our lives before we were Mama and Dada. It’s hard to remember what it was like when our plates weren’t quite so full, and even harder to remember a life without CHD.

How quickly CHD went from an acronym I couldn’t define, to an acronym that defined two years of my life.

Recently, I came across an old note in my phone that I wrote when I was still pregnant, just a couple months after learning Leyton’s diagnosis. My heart sank as I read the words. I wanted to hug that pregnant mama and reassure her that everything was going to be ok. To tell her that this little boy and our life with him in it, would all be worth it.

3 Months After CHD Diagnosis

June 1, 2019

I had a nice long shower cry tonight. The hot water is one of the few remedies for my back and rib pain these days so needless to say, some nights I linger. My mind wandered and in popped visions of my sweet baby boy. I swear I could almost picture his tiny hands, toes, frog legs and round belly. I wondered how many days it would be before I could hold him once he’s born. I won’t be greedy, I thought. If it’s what he needs then surely I can wait. And then it hit me. 

I am not enough for him. 

A thought that seems to defy human nature. I carried him inside my body for months. A body designed to keep him safe and provide nourishment perfectly tailored to his needs long after he’s born, and yet it’s not nearly enough. I stood there and sobbed. Selfishly, for myself and my inadequacy. How could I fall short as a mother before I’ve even officially earned my spot in the club?

I also cried for my son. The child I yearned for so fiercely and yet, despite my best efforts I can’t keep him safe. No, that is a job for a team of incredibly skilled surgeons, specialists and nurses. Perfect strangers who in an instant became the most important people in my life. The trust we place in them knows no bounds. I’m overwhelmed with gratitude that people like them exist and they haven’t even laid a hand on him yet. The tears continued to flow as another thought drifted to the forefront.

He will need me.

Don’t all newborns crave cuddles and recognize the familiar sound of their mother’s heartbeat? He’ll need me to be there, but what if I can’t be? What if he cries in a treatment room where I can’t follow him? Or needs comfort when he’s in the NICU and I’m recovering in another wing of the hospital? Or what if he’s afraid in the transport vehicle but it’s too packed with equipment to allow me to ride with him?

This constant stream of unanswered questions has become my new normal ever since we learned of his special heart. The shock has worn off, as has the desperation to hear there’s been a mistake. No, I accept the path ahead and we’re doing everything we can to prepare.

But some days the reality of how terrifying all of this is, how wrong it feels, just hits me square in the gut. A place once reserved for excited nerves and baby flutters is now filled with anxiety, fear and guilt. I do my best to shelter my little companion from the stress, but we’re quite connected these days. I hate that he feels it too.

I let the heartbreak wash over me for a long time. I’m always content after a cathartic cry like that. Eventually I turned off the water and stepped out of the shower, ready to face another day. Another day of smiling through pain in an effort to channel a newfound strength. A strength I know I’ll need to call on more and more in the coming months. I may be lacking in surgical skills, little babe, but love? I’ve got that in spades. I hope you can feel it already.

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2 Years Later

Rereading my words from 2 years ago, brought back those feelings so vividly. My mind never stopped spinning. Questions ruminated on a constant loop for months after diagnosis. Almost two years later, I now have answers to my biggest questions about birth and surgery. We’ve since experienced many of the things I worried about so deeply. In the process I’ve also come to realize the questions never really stop and the answers certainly aren’t so simple.

Will we feel scared or relieved? Will he be in pain or be happy? In reality, it was both. All of it at once. That’s parenthood though isn’t it? As heart moms, the push and pull we feel between two seeming contradictions feels magnified.

• I want him to know how extraordinary he is for all he’s overcome, but I don’t want him to feel different.
• I hate CHD, but I love my son and it’s a part of him. 
• I wonder who he will become, but I bury thoughts of the future because I know there are more challenges ahead.
• I’m grateful for modern medicine, but grieve a life where we didn’t depend on it.
• I want to teach him that all emotions are natural and welcome, but wish he never felt pain or fear.
• I wonder how it would’ve been different without CHD, but I’d do it a million times over if it gave me him. 
• I agonize over all the unknowns, but the more I learn the more I fear.

And on and on.

So yes, if I could go back and tell that scared pregnant mama anything, I would try to reassure her. I would let her know that we won’t have all the answers, nor will it be easy, but it will be temporary and we will get through it. I would tell her instead of wondering will it be this or that, try to accept that it will be all of it and more. There will be joy and pain, fear and relief, and the experience will change you.

I lost a piece of myself to CHD two years ago. I’ll never get back that blissful ignorance, naïveté, general sense of security or whatever you want to call it. But I’ve come to realize all is not lost without that piece of me. Without it I love harder, breathe deeper and live a little slower.

I still worry about the future sometimes, but it doesn’t feel nearly as all consuming as it did when I first wrote that note. I am proud of everything we’ve overcome together and feel confident we can take on whatever the future holds. Every day I get to spend with my smiley, strong-willed, lovable little boy and I never take a moment of that for granted.

So take that, CHD. Happy anniversary, I guess. 🙂