Shoot for Seamus

Honor, Courage, Humility, Quiet Strength, Faith, Endurance…to name a few of the things I bore testimony to today.

Also, I received an unexpected gift; one that I am not sure I deserved.

Not in the traditional sense…There were no bows, shiny wrapping paper to rip open, balloons with celebratory words, or people anxiously awaiting with smiles on their faces to see what was opened.

This was a gift of a different sort. The kind where you are invited into the most deeply painful, vulnerable and uncertain places in families’ lives and to walk alongside them, albeit brief.

I witnessed the power of community and the human connectedness that comes in tragedy, pain and in the unity of the unknown.

In the NICU.

This morning, our crew from TinySuperheroes, had the absolute honor of partnering with Shoot for Seamus for their 10th year to capturing pictures of so many TinySuperheroes fighting unique and mighty battles in the St. Louis Children’s NICU.

Volunteers and photographers, connected through their own journeys inside these walls, walked together adorned with love and TinySuperhero Capes, to provide brief respite, share a grain of joy, and capture this moment in time for families with uniquely beautiful and heart pulling stories to tell.

We were humbly invited into their lives. It was short and yet felt life-changing. Some families quietly stepped aside while we took pictures; some shared a glimpse into their story, while others were not there at all for so many reasons. No matter the circumstance, we were blessed to simply be human to tiny humans through silent tears, gentle back rubs, and exhales of hope released into the air. We were able to honor them right where they are in their precious life, and let each of them know we saw and loved them. What a gift.

As we moved from room to room, the halls were quiet, the feeling of worry and weary were palpable; I recognized that this truly is a place where time stops abruptly. Every breath labored, intense, steadfast. And even still, outside these very windows, life blazes ahead furiously and unforgivingly. My goodness, I imagine it must feel incredibly lonely and isolating; forgotten. Though…Through humble strength and endurance, I witnessed absolute warrior mama’s and daddy’s, babies that are unrelenting in their fight, and a staff so committed, as they spoke each child’s name with care and tenderness.

Upon arriving, I learned that this sacred event was born from the death of a sweet warrior named Seamus, just ten years ago on April 23rd, 2009, in this very NICU. I witnessed Tom and Sharon, his parents, celebrate his precious life by honoring and capturing a moment in time for families who are walking a similar and deeply painful path. The pictures taken captured the lights, the wires, the incubators…but also, the milestones, the hair, dimples, and eyes…their babies.

I had a moment to speak to Tom after the photo shoot, both of us elated and exhausted. I asked him how quickly after Seamus passed, was this idea born. He shared that it was pretty quick, as he and Sharon “needed to do something with the energy”. He said that shortly after Seamus passed, he read a quote that has stuck with him and pushed him forward for the past 10 years. It went something like this:

A rabbi that was dying, was asked if he was afraid to die.

He said, “No, I am not afraid to die. We all will. I am afraid of the second death.”
“A second death?”, the man inquired.

“Yes”, the rabbi replied, “the one when we are forgotten”.

…If there was anything I witnessed through this experience, it is that these sweet babies will not be forgotten in life or death.

In the end, every single one of them are deeply loved and have a purpose, no matter how short their time may be here.  

Their names will be spoken.

They will be remembered, celebrated, and courageously carried forward.

They are TinySuperheroes that have a gift to give.

I want to always receive it.

So, thank you to all of you in our TinySuperheroes community, for inviting us in and allowing us a glimpse into the amazing and unique journeys with your very special, very purposeful TinySuperheroes.

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