I can’t stop thinking of Abby Ellis this week.
I first learned of Abby in the Cardiovascular ICU unit at Little Rock’s Arkansas Children’s Hospital when my daughter, Ellie, was born. All I knew about her in the beginning was that she was around two years older than Ellie, and she was there with a woman with blonde hair. I never learned Abby’s exact medical condition, but we were both living on the same floor, so I knew her heart was her most pressing ailment.
I crossed paths with who I would later learn was Abby’s grandmother, Jessica, many times a day. We saw each other in the hallways, the family room, the cafeteria and in the elevator, but never really said more than a “Hi” accompanied by a very tired, very stressed, half-hearted smile.
It’s more like a smirk, really. It’s a universal look that carries something around the eyes giving us caregivers the ability to instantly and silently identify each other. It connects us through empathy, but also distances us from each other because we know that neither of us have any emotional capacity or brain space to take on one more thing.
The look is exclusive to those of us who are expected to make peace with whatever is happening in the room we just snuck away from. It makes no difference how long you’ve been there or how big your child’s problem is, it is all relative within those hospital walls.
No matter how bad each of us want our situation to be different, we are all the same, and we wear it on our faces. None of us want to be there, but we all continue to show up because there is nowhere else in the world we could imagine ourselves to be.
In that unit, the nurses make name signs to hang on the front of a child’s room. Using construction and scrapbooking paper, each letter of the child’s first name is cut out and glued to a colorful pennant. Each triangle is then strung together to make a banner.
Abby’s sign was always near Ellie’s. Each of our hospital stays seemed to coincide, whether they were for planned procedures or for emergencies. And, strangely enough, when we would leave, it would usually be on the same day or just one day on either side of Abby’s discharge.
With rooms usually right next to each other or just across the hall, we would be paired to share a nurse. I am sure there was a lot of double-checking charts because I would think being responsible for two kids who share a name, Abby Ellis and Ellis Honaker, would make doling out medications interesting.
The sliding glass doors and curtains between our rooms were thin, and I could hear Abby’s grandmother talk to her or make her smile. I watched Jessica feed Abby her meals and supervise therapies, and in the mornings or late at night, I could see the two curled up beside each other in bed watching TV. I overheard parts of phone calls of hers and I know she heard some of mine. I knew when they weren’t having a good day and vice versa.
I am sure she saw my red, teary eyes from time to time and that I watched Golden Girls on the small tv above my couch bed every night. She probably even heard me and Ben on days when we weren’t getting along and knew just how many double-dipped malted milk balls I ate from the gift shop when I was particularly stressed.
We knew each other’s patterns and were in the same place at the same time, but we never spent more than a few minutes in each other’s company. Even with not really saying anything to each other, I felt like Jessica and I were connected. We were friends.
She worked so hard with Abby who had some physical and speech delays and, as an older toddler, needed more attention than my infant who mostly laid still. Jessica had so much determination and energy that it was hard not to feel optimistic with her in the next room. It was a relationship where her actions spoke louder than her words to me, but really it was obvious for anyone to see that what mattered most to her was the wellbeing of that child.
One night during one of our stays, my husband and I were standing in the hall while the doctors did some procedure to Ellie in her room. As if on cue, Abby had been admitted right next door to us, and we saw Jessica while we were out there.
We talked for longer than we had ever talked before that night and, even though we would both be spending the night with our child in the most critical part of the ICU, we were able to laugh and smile for a while.
Somewhere along the way, Jessica and I became friends on Facebook. When we both weren’t inpatient, I got to watch Jessica’s cheerleading and support for Abby that way. Jessica posted every milestone and therapy session that Abby aced, and I got to see how Abby loved the rest of her family.
Any time I logged in, I could count on that sweet girl’s smile or watch a video of her responding to Jessica’s guiding encouragement. Because she was just a little older than Ellie, seeing Abby learn how to do some of the same things we were learning was hugely inspiring and kept me motivated too.
On August 6, 2020, Jessica posted that four-year-old Abby had passed away. I don’t know all of the details, but it was a surprise. I mean, we aren’t naïve. We all know that our kid with heart disease is very likely to die before we do. We are shown the statistics when we meet with doctors and spend enough time in the hospital clearing the way for running medical professionals who are called to codes that we know the writing on the wall, but that doesn’t mean that it still isn’t a shock.
And because of the bond parents of residents of the CVICU floor share, it was a shock to us all. Abby was a beautiful, determined little girl with a smile that could light up the world. There was always a little mischievous gleam to her eyes that told you all you needed to know about her sense of humor.
This week is Congenital Heart Defect awareness week and February is Heart Month. There is a lot of talk about Heart Warriors and zipper scars and calls to action to wear red to raise awareness. Jessica has rallied what seems like Abby’s whole family and all of her friends to share their support. Every day she educates about heart disease and posts pictures of Abby on her social media. She keeps her Heart Hero and others just like mine at the front of her mind.
Others on my social media pages have been doing that too. Every post and infographic shared helps to inform more and more people of what it is like in this heart world. But with every post I see, I can’t help but think about those who have lost their world to this disease.
So, as you see posts about wearing red, exercising and meeting with your cardiologist, please remember the extraordinary Abby Ellis and my friend Jessica. I learned so much from both of them about how to live this life. I thank Jessica for sharing Abby with us, showing us how much she overcame and achieved to inspire those of us who are left to roam the halls of the CVICU without her.
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