“I have a bizarre request . . . ”

I was messaging the photographer who would take our daughter’s newborn pictures. Our daughter spent the first month of her life in the NICU and would be joining our family with oxygen and a feeding tube.

“Can you take pictures of the oxygen tank?”

When we received the photos, a flood of emotion washed over me. For the first time, it felt like my little girl was truly seen. Instead of highlighting worry lines, these pictures highlighted what a miraculous gift our girl is. Like every mother, I long for the adoring whispers and knowing grins. Strangers’ smiles are quickly shadowed by pity.

RELATED: To the Mama Sitting in the NICU: Hold On

I’m the mom toting a toddler and baby on oxygen around. I’m the mom with extra doctor’s visits and extra worry lines. While the empathy is appreciated, I desperately long for the adoring glances that come with a healthy baby. As I juggle a toddler, infant, and an oxygen tank, I often want to scream, “You think this looks heavy? You should see my heart.”

I spent hours in the NICU staring at the monitor. There were days I never once turned on the TV or left to grab food. Instead, I spent the day staring, my leg bouncing, and willing her to breathe.

When we were told she would discharge with oxygen, I was so elated to bring her home that I didn’t mind arranging drop-offs for medical equipment. It wasn’t until we got home with the constant buzz of the oxygen concentrator and the sporadic beeps of the oximeter that I allowed myself to lean in to how I really felt about having oxygen in the home—I was devastated.

The nasal cannula has been a tangible reminder of the nights we spent apart. It’s a reminder that my baby needed more than I could give her. It’s a reminder that my body evicted her early and, as a result, her first few weeks of life were difficult. The oxygen tank feels like a physical manifestation of the worry, guilt, and trauma I carry.

RELATED: To the NICU Mom Who’s Back at Home

The pictures showed a perfect, beautiful little girl and her adoring family. It showed a little girl who needs help breathing but whose miraculous life is taking her mama’s breath away. It showed that life comes with heaviness but it also comes with immense joy. It showed that you can be equally grateful and grieved. Positioned beside her oxygen tank our girl smiled.

At 8-weeks-old, she was teaching me about gratitude. She was reminding me what a gift it is to be together even though it looks different than we dreamed.

I feel so thankful the tank allowed her to come home, but I am weary by the extra worry (and oxygen tank) I always carry. Sometimes families carry extra baggage (literally), but that baggage doesn’t negate the beauty of their family or their story. These pictures allowed me to embrace our reality. Things are hard. I’m tired. I’m worried. I’m madly in love with our little lady. I’d carry a hundred more tanks to have her home.

RELATED: In the NICU You Proved You Were Tiny But Mighty

Sometimes mamas carry extra baggage. Sometimes it’s visible and displayed as an oxygen tank, but sometimes it’s invisible. Sometimes it’s the weight of worry. Sometimes it’s the weight of grief. Sometimes she wishes she could show you a physical manifestation so you’d understand.

Baby girl, today I carry your oxygen tank, but I hope you’ll allow me the honor to help carry your worries, fears, and dreams. I hope you’ll confide in me and trust me. I hope you know I’d carry anything and everything to make your life easier. There is nothing that will be too heavy for me to carry for you. After all, I’ve carried your oxygen tank.

Image via @ciarajacksonphoto on Instagram
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Brigitte Shular

Brigitte Shular is a wife to her best friend and Mama to soon-to-be two kiddos. She is an avid reader and coffee drinker.

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