After a very rough and long night, we exited our hospital closet and walked the five steps to the NICU. It was one of those nights where you battle sleep because you never want the sun to rise. You soak in each hour and the seconds between the minutes hoping they stretch further and further apart. We were quietly ushered into a sterile conference room – one wall plastered with team goals written colorfully on construction paper and another littered with lists of candidates vying for department head. We knew this morning’s meeting was going to try us, possibly break us. We sat silently, staring at thirteen empty chairs, chairs soon filled with strangers. Their names ended in various abbreviations all representing a specialty we never knew existed, each one with an opinion about Birdie’s heart. As they trickled in, pagers going off in sequence, some immediately rushing back out, most avoiding eye contact, Mick and I sat stone-faced. We were frozen, trying to decide if it was all real.
As the conversation began there were disclaimers, minor disagreements, words you cannot find in a regular dictionary. My body was broken and tired, my mind so entirely overwhelmed that it was shutting down. I couldn’t speak, I could barely hold up my eyelids. I hated everyone in that space and resented their words before they even spoke. I refused to cry, I refused to show any emotion. With what energy I had, I stared deeply into everyone’s eyes – I needed to see they cared. I needed them to know we had a story, we were not simply another case on their desk. We adored our daughter and her life, her mere existence deserved ALL of their respect. After what felt like hours, all “professional and medical opinions” were laid out. Some with the utmost care and others so clinical I wanted to scream. Suddenly, it was our turn to ask questions. I could barely breathe let alone speak – my heart littered my insides. I turned to Mick – he sat stoic and calm – I am certain neither of us blinked. He gently rested his hands in his lap, looked every single person in the eye, and began asking well thought out questions. He respectfully let certain people know their opinions did not matter and preferred they keep them quiet. He somehow knew what to say and how to say it. I was baffled because the only words I had were inappropriate and filled with rage. As the meeting came to an end, everyone returned to their daily rounds and caseloads and we sat motionless, in a sterile conference room, facing thirteen empty chairs.
THIS moment, the one before our exhaustion and utter despair set in, a moment of quiet where words settled, and finality reared its ugly head, our world ended. As the door clicked closed, the last white coat disappeared from view – our resolve, the facade of strength and courage we showed dissipated into sobs, as we crumbled into each other. Our precious friends crawled down into our despair sobbing and wailing alongside us. Everyone shattered, everyone in shock. This was the day they told us, YOU have to decide what happens to her.
WE had to decide.
After that meeting we quite literally prostrated ourselves in the hospital chapel for hours pleading for her life. We didn’t sleep, we couldn’t eat. We called our families and they were all soon on planes heading west. We roamed the hospital halls like zombies as Birdie went through another echocardiogram and MRI. Once she was back we stood over her – memorizing every inch of her tiny body, every ridge in her finger nails, tracing every vein on her belly, counting fingers and toes, the way her hands grasped when she sensed we were close and the slow of her pulse as I sang her every song I ever knew. She was absolute perfection, and we had to let her go.
There’s a reason it took me 5 years to put this to paper. Maybe it’s the quarantine – a time to revisit our lives and realize there are still bandaids left to remove. This part of our story isn’t flowery. It isn’t something we share. This is raw and painful and unfathomable. To accept that you must determine whether your child lives or dies – there are no words. I don’t share this for sympathy, because I don’t think I want it. I don’t share this so you perceive us as strong or admirable, because we certainly feel the opposite. I also don’t share this to shame or sadden anyone. I share this because someone out there needs to hear it, feel it. They need to absorb its reality and its grace. I know that sentence is obscure and slightly opposing itself. But, this is what I know – my heart for Birdie was divinely planted – it’s strength, it’s passion, it’s unwavering pursuit was far beyond my capabilities. As painful and horrific the reality we faced, we had to face it and choose love over ourselves. We wanted to be selfish, we wanted to ignore science, we wanted to say we believed in miracles (which just meant we wanted what WE wanted). Without grace, making that decision would have sent me to a very ugly place. But with grace – I suffered, I questioned, I faltered significantly, but every time I wanted to give up, grace caught me. It showed me, no matter how twisted my thoughts, how broken my heart, or how doubtful my soul – I was loved and valued. Despite my rage, my hate, my anger – I was carried, I was held. Glorious, unmerited favor.
It is not an easy corner of the world, this one without our Bird. We do not always wear our story with the grace so selflessly given to us. Reliving these difficult moments is both healing and yet still so raw. The questions do not stop, the doubts often sneak through, and my self-assessments vary between rejection and acceptance of our outcome. The last year or so has revealed a few truths to me personally.
First, without selfless love, either bestowed on me or given by me, I will never accomplish big, earth-shattering things. It requires honesty, it requires vulnerability and it demands a willingness to not be OK all of the time. Second, I have zero control over anything. I spend so much time obsessing and over-analyzing every part of my life, I can actually miss out on it. Third, I am the luckiest person to have loved Birdie Anna. I wouldn’t change a single second of those seven days. She was awe-inspiring, a force to behold. For whatever reason, I, this broken flawed girl, was entrusted with her existence. There is a lot of responsibility there, to be good stewards, to share and be honest about all its parts. Fourth and final, our story is worthwhile because she breathed life into it. My hope beyond hope is that it inspires one other person to be brave with their life, honest and raw, and to find the grace and joy that can bloom from despair.