Staying Alive (One Beat at a Time)

I recently read some advice to embrace the chaos in my life, and I smiled a knowing smile. The smile was one that says, “YES. I know that feeling.” Let me explain. Once, after my son’s third heart surgery, it appeared he would not be going home with the achieved goals so carefully set out by myself and his cardiology team (the epitome of chaos, right?), and we had some difficult choices in front of us. We could stay in his room and cry, leave his room and cry, or do neither. We chose the later: to leave the room, equipment in tow, and laugh/sing/dance our way to joy. After playing, “I’m Coming Out,” it dawned on me that at least in this moment, he was alive. If you think you’ve ever known bottom-of-the-barrel sorrow or despair, I’m tempted to challenge you. It’s not until you see your child fight to live while he is conquering failing organs that you truly can embrace this darkness. Nor can you truly appreciate the light that can come from within for love’s sake. In this way, the burden is the blessing. Seeing my son live and breathe was such a beautiful gift that I found it worth celebrating. While I considered the insensitivity of playing, “Staying Alive” down the halls of a cardiovascular floor at a children’s hospital, I also considered it’s blatant defiance. No. We will not cry. No. We will not bow down. It’s like that with life, isn’t it? I saw him smiling, a beacon of hope, immersed in not only chest tubes, a pulse oximeter and oxygen cannulas, but also the grace and love of God. Later, as his oxygen levels began to rise and his lungs began improving, we  continued to take him out in his Radio Flyer wagon. He laughed with delight as he heard his mom sing, “Got the wings of heaven on my shoes. I’m a dancing man, and I just can’t lose. You know it’s all right, it’s O.K. I’ll live to see another day.” And boy, is he alive!

As I reminisce about this moment over a year ago, I’m all at once brought low in quiet humility and pushed high in ecstatic euphoria. Our chaos is still present. It’s not as severe or traumatic as life or death, but it’s still chaos nonetheless. Our hope is still present too. He is no longer living like a blueberry with oxygen levels in the 60s. I am no longer scared he will die today. However, I am still a single mom, and Charlie is still a child with a congenital heart defect. But. We’re also still the pair that stared death in the face and dared to laugh. I’m tempted again to close the door and stay quiet, but Charlie and I are not small and were never meant to be anything but larger than life. Maybe I will finish graduate school. Maybe I won’t. Maybe Charlie will start golf or t-ball. Maybe he won’t. Maybe we will live to 92 or 100, but with our love for God and faith in life everlasting, I am certain we will stay alive forever. The rest is just a checklist. In the meantime, I’ll keep my aim on kindness, integrity and the precious gift of time. Whether you belong to the group of people that anticipates raising a child for a couple of decades to set him free only to see him return three decades later to pay it all back, or whether you anticipate raising a child for six decades and setting him free into the world after you’re gone with prayer and careful laid out instructions, or, if like me, you might possibly be raising a child for a couple of miraculous decades and *may* have to face being the first to say goodbye, know that in this moment, you’re alive. Listen to your heart. In between the beats, you’ll hear that accepting this moment with all it’s uncertainty is where you’ll live your happiest life.

“Give thanks in all circumstances; for this is the will of God in Christ Jesus for you.” 1 Thessolians 5:18

A special thanks to the women that so freely and unabashedly join me in all of my circumstances. Especially Tessia and Tuh Tuh who each added original moves to our hospital hallway dances, Jessica who lent an amazing book, Girl, Wash Your Face, and a continued listening ear. A BIG HUGE hug to those single mommies, whether they trucked it unmarried for ten days or ten years: you’re magic. That’s you- Danielle, my mom and step-mom. A thousand tears and unbreakable soul connections to the mommies with special needs children (Ashley- you guys will rock the next surgery! Sydney, she’s the epitome of beauty.) Finally, thanks to Rachel Hollis, for authoring a book that helped me laugh and cry while garnering inspiration for my next chapter.

Tessia, Charlie, Mommy, Finnley, Dr. Bear, Rupert, and lots of love dancing through the hallways at Texas Children’s Hospital

Click here to buy my latest read and inspiration: Girl, Wash Your Face

While you’re at it, wash your hair too! If not, that’s okay. Just smile at being alive. No judgement here. God and your mamma still love you.

6 thoughts on “Staying Alive (One Beat at a Time)

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