the meeting

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.

Five.

I remember being five – I was a terrible person. I rejected authority, I stole from the blind girl at my lunch table, and was chosen only once to be the nap fairy. Apparently, I “tapped” people “too hard” when it was time to wake up. I would argue, it was the most effective amount of pressure for an efficient wake-up. I beat up on boys, I even hit the girl-next-door with my wooden shoe. But, I also had adorable freckles, loved the elderly, my imagination was its own universe, and I was entirely certain of myself. My mom says I was born this way…confident, never intimidated, and one might say, brutally honest (like all my elderly homies). I was an uncompromisingly whole person.

The start of 2020 ushers in a fifth year without our Bird. My emotions have been all over the place and words fail me. If I’m being honest, I think deep down, I didn’t want to deal with this week, her week, or even acknowledge the month of January. New Years’ morning I woke up and immediately began crying – this reality, the one without Birdie, it’s isolating and screwed up, unnatural. We took our annual trip and it was lovely – we were adventurous, tried new things, exploring new places – all the things we promised her we would do. But…we didn’t talk about her or actively celebrate her life. I don’t say this to make you sad, or mad, or fearful of our emotional health. It’s more just a moment of brutal honesty (cuz that’s how I roll). Life can be very lonely without her, at times overwhelmingly so…to the point I/We want to pretend it’s not our reality. This shit is hard. It’s strange and surreal, it’s horrible yet somehow beautiful.

I think the most difficult part of this fifth year is, imagining her as a vibrant person, one who has a shoe size, a preferred book, and parent to read her to sleep. I imagine her with defiance that can only come from me and a distinct laugh and dance moves that mimic her dad. Her inquisitiveness would open up our world to brilliant conversations; an entire personality in a tiny body, looking to us as if we are the world. She would be confident, courageous, stubborn… an uncompromisingly whole person. That’s it, right there, the gut punch, the emptiness…why the walls go up. Where do we put that? 

Well, we shouldn’t run, hide, or build up walls and pretend. We have to acknowledge it and then we dig, we fight for the JOY. ALL of this – my life, my grief, your life, your (insert whatever here), it takes time, a lot of it. A time filled with brave and honest work, bearing witness to every part of the process – cultivating the good AND the bad. We cannot have the joyful moments without the dark and suffocating ones. The struggles within the process, are the heartbeat of life. They open doors, windows, and portals to our growth, they bring life full circle. Suffering is the very place we refine and reshape, where we experience the full joy of achievement. When we try all the things to ignore this, to press pause on suffering, or push it down, pretend we’re all good…well, it doesn’t work. Trust me. It will hunt you down, grab you by your face and demand eye contact. Consider this “lecture” a wooden shoe across the facemore for me than for you. (sorry Jasmine, wherever you are)

So – taking my own advice, owning my reality, here is the JOY: I am still that confident, brutally honest little five-year-old*, but Birdie softened my edges. She taught me volumes on grace and forced me to be brave with my vulnerability and my life. I am a better person because of our lil Bird. She urges me to open my heart, to live bravely, to free-fall into the unknown. I know and understand more about love, more about suffering, and I am learning to practice empathy. I have miles and miles to go. I will falter, I will fight against my better judgment, but in spite of this, I will always, always strive to honor her and look for the Joy.

 

*Remix: I no longer hit people with wooden shoes, no matter how much time passes, I will never be the first choice for “nap fairy,” and, I no longer steal from the blind.

being yours

I was undone at the sight of you

I understood how mountains could move, lands separate, oceans rise and fall

I felt my very core tremble knowing you were mine

I became fearless as you took your first breath

With every squeeze of your tiny hand I gained strength, I became better

My old self eclipsed by a woman, now a mother, branded by your very existence

Being yours meant I would accomplish the most difficult, most breaking of things

Being yours means knowing boundless love and soul crushing pain

The light you ushered in is forever unmatched

The truths you unveiled continuously reshape my perspective

My heart now beats where yours cannot, it’s pulse ever so slowly inspiring a new life

Each inhale and exhale carrying the melody of heaven, resounding in His perfect love

It casts out fear, it casts out doubt, it has no end, it has no equal

May that melody flow to others, may it move the mountains in their hearts and bring light to darkness

My precious lil Bird, you are our broken pieces shaped into perfection, into selfless love

What an honor it is to be yours

be relentless

Almost exactly 4 years ago I was sitting in this same house, taking in the changing colors, cheeks flushed from the crisp east coast air. It was a joyous week celebrating life – 50 years of one well lived, the union of two beautiful souls, and the anticipation of meeting the little one growing inside me. Family from near and far all converging with shared purpose and excitement. There were so many hugs and squeals – the air riddled with hope, elation, and that feeling – you know the one – where all just feels right in the world.

Weeks before our trek across the US, we learned our Little Bird may not be growing as she should. The messages were mixed and tests inconclusive. We kept the potential of her defect to ourselves – we wanted our ignorance to last as long as it could. The air was thick with joy and maybe selfishly we knew, this would be the last time we would breath with ease, the last time we could wear joy and know it was genuine. Surrounded by every face we’ve ever loved, receiving thoughtful gifts – some passed down through generations, and resting in the idea that life was good – it is something I will never forget.

As I sit in the same house, cheeks flushed from the crisp fall air, tears sneak quietly down my face. This isn’t how we were supposed to return here. Empty handed. Hearts deflated by pain and anger. Broken in every way. It feels as though we exist on the outside looking in. Always asking ourselves, is this our life – forever and ever? Does this state of devastation and grief ever lessen? Does it ever become something capable of sharing space with joy and happiness? I don’t have the answer. It is likely I never will. That has to be OK.

What I do know is this: even when I can’t see through the grey and the fog, life is still beautiful. It’s beautiful because even in this mess, this effed up brokenness, there is love. I know that love is so much bigger than me and my pain – it is the currency in which I should place all my investment. Without it – we would not have made it this far and neither would you. We all have a story – likely littered with pain and disappointments – that’s OK – it makes us human, it gives us common ground. We need to use that common ground to be there for one another. If you know someone in pain – sit outside their door – take them a meal – send them a text or email (snail mail is WAY cooler though) – love them in whatever way they let you, until they let you in. Once you’re in – don’t freaking screw it up! Don’t give unsolicited advice, ask them how long it will last, or lament about your own problems – JUST BE. 

I cannot stress or say this enough – if someone you know is grieving, the loss of a person or their life played out in depression, anger, isolation; maybe they’re struggling with family or lost in their own pain – don’t stop reaching out. Ever. Also, Don’t make it about you. If they don’t respond, do so harshly or coldly – don’t take it personally (well, try not to). It won’t be easy – there is an ugliness that stems from shame, loss and pain. It manifests as self preservation; the thickest and tallest emotional walls, and words sharper than knives. It generates visceral reactions to the simplest of things and strikes out of fear, loneliness, and exhaustion. Nine times outta ten, it has nothing to do with you. Chase them down and leave your expectations outside – try and try again, be relentless in loving them even if they only let you from very far away. One day your love will seep through, it will sit with them when they feel alone, it will tap them on the shoulder when they’re about to lose it, it will keep them going.

1.25.2015

Three years have passed – I don’t know if it feels like a minute or a lifetime. I am at a loss this year – words are turbulent in my mind yet putting them to paper feels, impossible. I hope we tell her story well; that we are assiduous in living out her legacy, and that we do so fearlessly, profoundly, while always cultivating joy. Hey Lil Bird…we love you, happiest birthday, our darling girl.

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I’ve waited a hundred years
But I’d wait a million more for you
Nothing prepared me for
What the privilege of being yours would do

If I had only felt the warmth within your touch
If I had only seen how you smile when you blush
Or how you curl your lip when you concentrate enough
Well I would have known
What I was living for all along
What I’ve been living for

Your love is my turning page
Where only the sweetest words remain
Every kiss is a cursive line
Every touch is a redefining phrase

I surrender who I’ve been for who you are
For nothing makes me stronger than your fragile heart
If I had only felt how it feels to be yours
Well I would have known
What I’ve been living for all along
What I’ve been living for

Though we’re tethered to the story we must tell
When I saw you, well I knew we’d tell it well
With a whisper we would tame the vicious seas
Like a feather bringing kingdoms to their knees

-Ryan Curtis O’Neal – Sleeping At Last || Turning Page

 

the thing with feathers

“Hope” is the thing with feathers –
That perches in the soul –
And sings the tune without the words –
And never stops – at all –
And sweetest – in the Gale – is heard –
And sore must be the storm –
That could abash the little Bird
That kept so many warm –
I’ve heard it in the chillest land –
And on the strangest Sea –
Yet – never – in Extremity,
It asked a crumb – of me.
-Emily Dickinson

happiest birthday lil bird

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All the feels

We went back east a couple weeks ago – we walked into all things familiar. My hair instantly frizzed upon exiting the airport, my ears were assaulted by car horns and sirens, and my nostrils filled with bus exhaust. It was oddly comforting. Every face looked and sounded the same and the hugs, although tighter and longer, felt the same. There were a few eerie moments – moments we were reminded that life has moved forward for everyone even if ours stopped back in 2015. It is entirely out of self preservation that we are here, this space of alienation. It has allowed us to function with little emotion and skirt by these last two years without crumbling. I recently read in an amazing [read: FREAKING AMAZING!] book that the first year of grief you walk along numb and unattached [check!]. The second year, all the shit you pushed down down down begins to surface. Not just a twinge here or there – more like bursting into hysterics because you can’t get the ice tray to crack, or screaming at inanimate objects for running into you when in fact they are in the same spot they’ve always been. My heart is colder than most so I’ve stretched it out an additional year. I rarely cry too which means my hysterics involve throwing things [like ice trays], cursing in patterns that make little sense, and kicking dressers that jump out of nowhere. To describe an ache for something, something you never really had is the most difficult thing. The yearning is powerful, it can be a monster dragging you down and around emotions you once thought hidden or absolved.

I once wrote how the dichotomy of death and life existing at once and altogether shared, is…surreal. It’s changing us – it’s changing our world and relationships. Relationships come and go – some run dormant for years only to be picked back up when needed most – it is all part of our story. The pain we experience, the ache of loss whether in relationship or in death – is an ache to explore. We chase moments and memories and seek familiar feelings but in a new reality. Every day is an opportunity to accept a new set of circumstances and be honest with ourselves, honest about the raw feelings, honest about the fear and the what ifs. There is always hope – there is always the idea that someday, even if we’re 80, loss and the reasons why, will finally make sense.

I think these last two years have made us homesick – not for a place but for the people that make a place, home. We realized we are parched – emotionally speaking. The amount of love that rained down on us in Maryland was incredible – we were watered and cared for and every last bit of us, dusted off. We left, our souls filled to the brim. Even the briefest of conversations left their mark and we are so thankful for our friends and family back east. You all know how to make two worn out people feel loved and missed in the most epic ways.

“it’s the tragedy of loving, you can’t love anything more than something you miss.” – Jonathan Safran Foer