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.

Tis the season

This time of year stirs up feelings of joy, togetherness, generosity, and hope. Hope for a new year, a new way of doing things, a better version of oneself. Hope for better, more functional relationships, and of course, stronger thighs and tighter abs. This time of year also draws out all the ugly we repressed for the last 300+ days. Feelings of sadness, loneliness, grief, trauma, pain, addiction. I don’t know if it’s the placement of the moon, the winter solstice or all of the subliminal holiday messages of happy families flush with cash. Whatever the trigger, we all find ourselves in one or more of these emotions, states of being. Maybe we are reminded of those we lost – an empty chair at Christmas dinner, the movie we used to always watch with that person, the first Christmas ornaments that never were. Wherever you fall on this spectrum this holiday season, know you are seen, you are loved. You are better today than yesterday, and if you just raged on someone at Target for taking the last * insert whatever it was here * – good news! You can start fresh tomorrow. 

I say this every year, but if you know someone who goes to a dark place over the holidays – reach out. Leave a gift, a card on their doorstep, hug them in the grocery store, cry with them if they need it…notice them and their pain. You don’t have to make a big deal about it or go overboard. If they don’t want to cry, that’s OK too (they’re probably closet or shower criers – let them have that). The simple act of showing them love, letting them know you remember their hurts and their broken pieces, it means more than you know. If you don’t know what to say, it’s also OK to say, “I don’t know what to say.” It’s so much better than the awkward pause or disingenuous gestures.

Christmas in and of itself is JOY and HOPE – it’s also a call to be these things to others! Pay it forward, show kindness to strangers, give of yourself. As you sit down with family or friends (or dogs and cats) this Holiday – stop and breathe. Notice those people, in that space and show gratitude for however they showed up. Notice the breath in your lungs and what a privilege it is to share space and life with others. To share highs and lows, disagreements and redemptive resolution. This day represents promises kept, selflessness given, and the everlasting promise of eternity.  

Happiest Holidays to you and yours! Wishing you peace, joy, hope and continued growth in 2020!

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

Auntie Mary

There they sat, sun kissed around a 70’s formica table, salt water creating crispy curls in their hair. The scent of tanning oil wafted through the outdated beach rental. The shag carpet was recently vacuumed, and by recently I mean, at least seven times. The furniture rearranged, dusted, lysoled, and dusted again. The ashtray was filled with Marlboro lights, all with red lips permanently imprinted on their papers. Towels hung over the balcony to dry, a tv in the bedroom creating background noise and sending flashes of light down the hall. Tears streamed down their faces, silent laughter shaking their bodies, UNO cards scattered on the floor. There she sat – mascara running down her cheeks, the corners of her Revlon stained red lips almost touching her ears. She never failed to get the last laugh, the hardest laugh, the rawest laugh, and the most joy watching her audience.

My Aunt Mary. My oh my, was she precious to me. She was the queen of sass, brutally honest to her core (savage as the kids say), always a full face of makeup, at least two precious stones on her fingers, peppermint flavored Extra gum, marlboro lights mixed with some Reds, a can of lysol, and a comment about everything. She was never a distant aunt, an old aunt, a crotchety aunt…she was my immediate family. At times I wondered if my cousin and I were switched at birth – I have Mary’s auburn hair, petite frame, eyelashes for days, and precision with a makeup brush. She could never offend me, she loved in her most unique way, and she was a pillar of my childhood and adolescence. She taught me about makeup, skincare, to assume every surface was once touched by someone’s dirty foot or butt, and she taught me how to find humor in just about everything. Her life wasn’t always smooth, but she was a survivor, she was scrappy as hell, and I adored her, every.single.bit of her.

This precious human being left our temporary world for one eternally filled with joy, laughter, and zero pain and suffering. She leaves behind an equally fierce daughter, two priceless grandsons, a gentleman who loved and cared for her over multiple decades, five younger siblings, multiple nieces and nephews who thought the world of her, and a sweet pup named Jacque.

I Love you Auntie Mary, with all my heart. I am so grateful you no longer suffer, I am thankful you are whole, being made new in every way. I can hear your laugh in my head and pray I never lose it. Kiss kiss hug ❤ 12.3.2018

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.

The house we live in

Big change tends to stir up those things we repress. It draws out any ugliness we try to cover with the “New” thing or the “New” experience. I guess the real adventure is embracing every part of the process – not just the shiny newness, but all the brokenness that brought you there in the first place. Since we moved I have been a lost and found box of emotion. I have tried detaching, scare tactics, distraction, numbing, close up magic (just kidding) – none of it works. At the end of the day I look like an out of control emotional crazy person, and basically, I am.

Over the last six or so months I have been a little obsessed with personalities. There is a part of me that always wants | needs to know the “whys” of things. Why things happen, why two people can look at the same situation and come to separate conclusions…etc. Back in September a friend introduced me to the Enneagram (read: diagnosed me). The nerdy researcher in me began reading everything and anything I could get my hands on. It’s an absolutely fascinating concept, and dare I say, spot on. I am familiar with various other methods of personality typing, but this one described me perfectly, to the point where I may have had a small identity crisis. If you aren’t familiar, and are willing to see yourself in the best and worst sense, I would encourage you to check it out.

On my quest to gain a better understanding, I realized my biggest enemy, other than grief, is stress. When I am stressed I either get very sick or basically turn into a monster. I could be a monster to those closest to me, those within a 3 to 5,000 mile radius, or just to myself. I researched introvertedness, logical | critical thinking, sensing, feeling, judging; all the ways we as humans emotionally react to any given situation. I am incredibly hard on myself, the expectations I chase are more often than not impossible to catch. When I disappoint myself I take it out on others. When I am angry or lonely or sad or frustrated, but cannot put words or emotion to it – I project. It is a vicious cycle, one I am desperately attempting to correct. Stress inspires a way of acting/reacting that gives me visions of what I would have been like as a cavewoman – absolutely terrifying. If this were a sitcom we would flash to a scene: me in torn clothes, feeding on raw meat, blood trickling down my face, dirt smeared skin, and grunts and growls being my only form of communication. It also gives me an appreciation – like a deep tear inducing appreciation – for friends and family who love me in spite of my gnashing of teeth and/or disappearing acts.

Who we are and why we are those people is an important study. I was insulted at first by my personality typing and I was incredibly unkind to myself as a result. I am thankful for so many of the things that make me, me – but there are scary parts – there is a wildness that needs – not taming so much as love…self love. I read a quote the other day that basically said – the words you say to yourself, become the house you live in. Throat.Punch. The house I live in is weighed down by words of frustration, sadness, and weariness. Words of joy and gratefulness are certainly scattered in there – but self reflection is no joke. I need to strengthen my walls with encouragement, lower my expectations, accept my lack of control. I need to stop withholding grace – be OK with time: time for growth and healing.

I have been horrible at balancing life this last month. I have been difficult, cold, and ambivalent. Here’s to embracing all the messy broken parts – accepting responsibility and owning the process. Part of showing myself grace, is also a practice in showing it to others, better than I have in the past. Recognizing we are all works in progress – and the only way we can do this life is together is by simply loving ourselves and one another. Love has no expectations or pro and con lists; it is kindness, it is grace. And when we do a crappy job, which we ultimately will, love is owning that failure and trying again, over and over and over.