There are normal moments for us, like when he's home, asleep in his own crib. But when your baby has cancer, there are moments that shatter you. And they are constant.
Health Parenting SPM/MM

Moments That Shatter

There are normal moments for us, like when he's home, asleep in his own crib. But when your baby has cancer, there are moments that shatter you. And they are constant.

Rhythmic sighs emerge from the crib beside me, which is more akin to a cage than a baby’s bed. How do hospitals manage to make every aspect of a room feel so frigid? The dim lighting, sterile smells and distant cries of other little patients here on the sixth floor gradually dull my senses.

I glance at the tangle of tubes extending from my peaceful son’s body, over the bars of the crib, leading to a tall IV pole. On this pole hang three little bags. One is a simple fluids bag, predictable and ordinary, but the other two are distinct. This distinction is alarming; bright red tabs serve as a warning that special care must be taken when handling them. The nurses wear protective gowns, masks, and gloves every time they touch these particular little bags: hospital protocol to protect them from coming into contact with the hazardous chemicals contained inside.

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Blaring beeps come from an IV pump abruptly. Unstartled, I realize I am now almost accustomed to the once-vexing sound. The beeps indicate that one of the bags is empty; a screen flashes “infusion complete.” The hazardous chemicals, once contained in that bag, now pump throughout my son’s tiny body. To save his life.

Two months have passed since a man I had met only moments before uttered the words, “Your baby has cancer.” Those words flowed from his mouth so effortlessly, yet slammed into my body so forcefully. They entered my ears like a freight train, shattering every piece of me with its force. I didn’t hear much of what was said after that. I watched as his mouth moved, forming more words, but I heard only a piercing buzz. Our lives were changed forever with just four words. The rest of the world continued to move and go on after that moment. Life resumed, work to be done, bills to be paid, engagements to attend. But I am frozen, my mind is stuck in that room, replaying the events of that fateful day.

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I find myself unable to focus on anything beyond what is taking place inside the body of my youngest son. The body I created with my own. The life I am responsible for nurturing and keeping safe. I was aware of childhood cancer before this, but that was always someone else’s story. An abstract world I would never occupy. I would think to myself, “Oh, how incredibly sad for them” while knowing with comfort how rare it is. It never touched my life, likely never would.

That is, until it did. That abstract world is now a concrete existence. That sad story is now our own.

Between the cycles of chemo and hospital admissions, life has a semblance of normalcy. My son sleeps comfortably in his own crib. I listen to his rhythmic sighs from the comfort of a recliner my husband and I picked out solely for the plushy, over-sized cushions. We are home: safe, familiar, comfortable. I gaze proudly at the decorations we so carefully chose for our baby’s nursery. His walls are teal, the theme is “happy camper”— a play on words, as our last name is Camp. Above his crib is the personalized wall art I was so excited to hang, long before he was born. A picture of mountains, stars, and a moon above his name “Jameson” in the center of an arrow, the words “Adventure Awaits” below.

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In this room, we change his diapers and dress him in tiny adorable clothes. We sing to him and read to him. We discuss what we think he will be like as his personality blossoms, as he grows and learns to run and play. No doubt he’ll be as mischievous as his older brother and sister at times. In these moments, I study his precious face. His deep blue eyes are captivating. His cheeks are full, complete with the cutest dimples I’ve ever seen when he smiles. His smiles are remarkable. They make it easy to forget, for just a moment. When I watch him giggle and begin to learn about the world around him, I can pretend his obstacles in life aren’t so extraordinary.

Then comes time for a dose of medication, or to flush the central line in his chest. Every night at bedtime, I must give my baby a shot in his chubby little thigh. In these unpleasant moments, the knowledge of his cancer comes crashing back. Shattering the blissful illusion of the normalcy we once knew. I am a different person—a different mother now than I was just two months ago.

I have been forced to acknowledge the sheer mortality of my children’s lives. Forced to stare that mortality in its face and plead “not yet, he’s just a baby. He has an entire life ahead of him.” Forced to consent to powerful treatments that will likely negatively impact his life, forever. The chemicals being forced through my son’s body are saving his life but damaging his body at the same time. Damages I must sign documents to acknowledge I understand the risks of, and still consent to.

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I watch as this poison is intravenously pumped into his body, putting him at risk of losing his hearing or future fertility. Small sacrifices to wager for the victory of his life, I assure myself as I gently caress his soft cheek.

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About the Author

Rachel Camp is an emerging writer who focuses on the emotions of her journey in and leading to motherhood. She lives in Iowa with her husband Jon and their three small children. Follow her youngest son Jameson’s journey to beating neuroblastoma on Facebook here: www.facebook.com/teamjamesoncamp