Vega by Ed Sheeran
Alex and I sat outside of William’s room, while the world was tilting every way but level on its axis. We watched as EMTs swirled around our new born son’s tiny warmer basinet and as each of our faces were wet with silent tears, I could hear Alex’s and feel my breathing grow quicker as time passed.
When they finally wheeled William out into the hallway, after we signed waiver forms for transport and life saving measures on the way there “just in case,” we peeked into the tiny circle door where his face was and I whispered, “be good” for the first time as a mom. Not in the “you better be good, mister” way. More in the, “stay safe and stay good while I’m not with you” way. The people (I don’t remember exactly what their titles were) explained to us that the ambulance sirens would be on because his transport was “time sensitive,” but they encouraged us to take our time.
“Don’t follow the ambulance, even though we understand the urge,” the EMTs said, “it’s extremely dangerous for William, you both, us, and other drivers on the road.” We nodded in fuzzy agreement and stood in the middle of the hallway as strangers took our less-than-two-day-old baby away from us. I distinctly remember this being the first time of many that I closed my eyes as tight as a could for a moment, in hopes it was all a nightmare and when my eyes opened, I would wake up.
Alex and I held hands as we walked a few paces behind them and then down the stairs toward where the car was parked, only to watch them wheel him out of the special elevators through the same door we had to go through. I thought I was going to throw up right there in the updated hospital lobby for the innocent, unknowing other people there to witness.
Fast forward almost exactly six weeks and we had been living at this new hospital. We hadn’t slept at home yet, only gone home to take showers and do laundry… maybe grab a few things we needed to continue living at the hospital. It was May 5 and Ed Sheeran had released a new album. This was the closest to excited I had been about something in weeks, other than William surviving another surgery with low survival odds or still being here after his cardiac arrest. I downloaded the album in my car parked under the children’s hospital. Alex was up in room 3144 with our William, and I was going to listen to Ed Sheeran’s new album while I drove home for a shower and “relaxed” outside of the hospital.
The first thing I noticed was the cover art. It was the artist’s face but crafted to look like an anatomical heart. I knew then that this album was going to be perfect- as I knew Ed wrote it in response to his wife being diagnosed with cancer and his best friend dying. I always listen to albums in the order they’re presented because I figure there’s a reason for it, but this time, I granted myself the freedom to click the shuffle icon and skip any song that felt too upbeat.
I hadn’t felt like an upbeat song since William was born.
The song that came on was Vega. It was the lyrics that hooked me, “Rain keeps beating on the rooftop, muddying the glass, but god I love the sound of heaven.” They went on to explain almost eerily how I felt about our lives in that moment. “What can you do but pray and count your blessings, it wasn’t any other way…” At least William was still alive and there was still hope. I was confused by the title though and the line that is now my favorite, “but it burns like hell to be Vega.” So right after I parked in front of our home, before I walked inside, I googled…
What is Vega?
According to Wikipedia*, “Vega is the brightest star in the northern constellation of Lyra… This star is relatively close…and one of the most luminous stars.”
Alex and I heard hundreds of times by that point how much grace we had and how our energy was light in William’s room. We had been told that we were great to be around from the perspectives of people/staff inside the hospital and people who came to visit. Now, that’s not a brag on my part- I promise you that. And it wasn’t quite a coincidence.
It wasn’t more than a week after we got there that Alex and I had made a conscious decision to be kind and loving toward everyone that walked in that room. “I’m sure they see so much sadness and heavy shit…” I said and Alex had already been joking and laughing with the nurses and doctors by that point. We tried to keep it light in William’s room. There was one point, a few weeks before William died, where I think one of the doctors caring for William came into our room to give us something like a “reality check.” The doctor was kind (as all of them were), but also straight forward. She explained that William wasn’t progressing and encouraged us to make some decisions about what we wanted him to experience while he was here with us. Like I said… reality check. I genuinely think that doctor felt like we were unaware of the reality we were in with William. That we were blocking out that his lungs and kidneys weren’t getting better and there was a real possibility that we would have to say goodbye to him sooner rather than later.
What that doctor and several others didn’t see most of were the conversations Alex and I had. The times when we had to make impossible decisions for our brand-new first child. These weren’t witnessed by others mainly because we usually walked outside and sat on the curb to have them. There were tears, pros vs cons, and temporary disagreements. Then, once we agreed on the next steps, we took deep breaths and had thoughts like the lyrics, “if we believe than [he’ll] get better.” We would promise each other that we were going to be okay, and we just had to do what we thought was best for William in the moment, even if it didn’t feel like “good” and we had to keep believing for him and ourselves. We needed to walk back in through the automatic, rotating doors, up to the third floor, and back into his room with hope and love and light. So that’s what we did each time- we were that star. Burning bright like a literal fire, but we were going to at least keep ourselves and the people caring for our little boy warm.
My goodness, did it “burn like hell to be Vega.”
Stephany Luithly 
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