Many summers ago, Greta and Angela attended a day camp with their cousins Ann and Kathleen. It was called Camp Awareness. My sister has this pictured framed and hanging in her home.
Awareness. A peculiar name for a summer camp. But a word that was on my mind during Becky’s time in the PCICU.
I received a lovely email after a post about baby Sterling and her departure from the PCICU. A friend of Sterling’s parents reached out and wrote me something profound: “Thank you for noticing, posting what we know in our hearts but did not get to see.”
Thank you for noticing.
That was the part that struck me.
It was the perfect launch for this post. For I’ve wanted to write about two experiences that I had in the PCICU during Becky’s first open heart operation. One experience was difficult, another heartwarming. And both had something to do with awareness.
The hardest thing about Becky’s open heart surgeries happened during her intubation. It wasn’t the visual image of my daughter being on a ventilator, a machine artificially breathing for her. In and out. In and out. In and out. I was prepared for that. I’d seen her intubated before in the NICU.
In fact, the very first moment that I saw Becky, she was on a ventilator. I don’t remember how I got there from the operating room but I remember seeing her for the first time. It was scary. The medical staff stepped back as I absorbed the moment.
There had been an emergency.
She couldn’t breathe on her own.
I was crying but, honestly, I was so drugged up that I can’t remember much from the next few days. By the time I regained my full faculties, Becky was off the ventilator and breathing on her own.
But when Becky had her first open heart surgery in January, I was fully cognizant. For the first few days after her surgery, Mom and I hovered over the crib, watching Becky. All of a sudden, with no warning, her smooth, chubby face would gather into wrinkles and folds. Her body would writhe up in pain. Eyes pursed closed, she would cry out.
In absolute silence.
There was no sound. There was no noise. She communicated inaudibly, telling us of her discomfort and pain, of her need for help. But if we weren’t looking, if we weren’t bedside, we would never know about it. For there was nothing to hear.
It’s a haunting image, the stuff of nightmares. A tiny baby, with tubes taped to her mouth, crying out in silence. It caused me to pause. And to reflect on the world around me. How many people are there in pain or deep agony? Just across the room? Behind me in church? In front of me in the grocery store? Waiting for someone to step alongside them and pay attention.
For someone to notice them.
Without saying a word, through her silent suffering, Becky has taught me to take greater notice of those around me. Since her birth whole new worlds have opened up to me. I’ve watched doctors and nurses nurture the most fragile of lives. I’ve seen parents bravely face the most unimaginable obstacles. I’ve benefitted from the constant care of volunteers and donors who kept my home away from home. All in the hidden worlds of the NICU, the PCICU, and the Ronald McDonald House. But all of this often goes unseen.
One night, Mom and I walked out of the PCICU with Maggie and Tim, baby Charlotte’s parents. It was obvious that they had had a difficult day with another round of disappointing news. Once again, Charlotte was reintubated, their hopes dashed for seeing their daughter breathing on her own. Mom and I could see their care-worn faces and dejected body language as they walked out of the unit. They went on ahead of us and disappeared down the hallway.
Mom and I followed a short while later. As we walked towards the Ronald McDonald House, I looked outside and noticed the winter weather. In the bright lights streaming from the parking garage, I saw bands of heavy, wet snow racing towards the ground. Although it was only a short distance, I knew it would be a precarious walk down the big ramp and across the street. I silently worried for Mom and her footing on the icy sidewalk.
As we rounded the corner, we saw Maggie walking towards us. She told us that the sidewalks had not been cleared and they immediately thought of Mom. So Tim had gone to the parking garage to get their car. To offer Mom a ride across the street to the Ronald McDonald House. All of 100 yards away. We were deeply touched by this act of kindness. In the midst of their difficult day, they set aside their sadness and performed an act of service seen only by us.
I could write story after story like this. There is something about these tiny heart warriors. Unable to speak. Unable to breathe on their own. Unable to move. But they have an incredible power to inspire. To open the eyes of those around them. Their misshapen, malformed hearts teaching us how to love more perfectly. And how to give.
The gift of awareness.
Baby Charlotte has a big day tomorrow. The PCICU team has been diligently preparing to extubate her. Charlotte has breathed on her own only 23 hours of her life. Please pray for her, Maggie and Tim, and the entire team for a successful procedure. We are pulling for you, sweet girl!