More than anything, I would love to sip on my latte and pour out an advice column detailing the precise steps to take that help parents overcome the death of their child. I know better. And if you are reading this, you know better, too. We all know better. Each story is undeniably unique. Comparing any two situations is futile. Putting yours and ours, theirs and those in a single box is ineffective.
All I can offer is from personal experience. I don’t speak on behalf of my husband, of my family – but only me. Not on behalf of all bereaved parents, or broken mothers, but just this one. It is said that you grow through what you go through, and for me, nothing has been truer. In fact, some of my deep seeded growth spurts have taken place as a result of my mistakes in the aftermath of our daughter’s death.
Sharing these with you isn’t an effort to help you avoid making them. It isn’t an apology or a peace offering. I’m not patting myself on the back while singing about self-love from a soapbox. I’m saying the things I wish someone else had.
Mistakes can be seeds that bloom into perspective; grow into your wisdom.
Within a few days after the moment our daughter took her last breath, my daily goal turned into a search. I needed to know that her life and her death had meaning. I wouldn’t stop until I discovered why she died. Or, I would make darn sure it meant something.
I continued to blog. I poured my talents into fundraising in her honor. My thoughts were consumed with her. My prayers were desperate pleas for clarity and understanding. My focus was zoomed in. I couldn’t see past the tip of my nose.
And then I had a conversation that changed everything. One I had to be ready to hear and I was. Had I heard these words any earlier, they might have stung too much. Instead, they were an answered prayer. They were clear.
“She doesn’t need you, Rachel. In the best way. She has Heaven. What you do to honor her is beautiful, but she doesn’t need that.”
And I had to ask myself, “Who am I doing this for?”
Me. I needed it. I wanted the tangible thing to fill the space she wasn’t. And at the end of the day, every dollar that was raised, as incredible as it still is, didn’t change what was…what is. Every effort I made to bring her story honor, it didn’t change her outcome.
When I changed my position and saw fundraising less as a way to fill a void and more of a way to help other families, it actually helped me heal faster, more wholly.
In our daughter’s case, every day lived was one we didn’t expect when I was expecting. She was very ill to begin with and it was unlikely that she would live outside my womb. My heart was guarded. I connected very little to her during my pregnancy, afraid to fall for my baby girl who I might not get to know. And then, she lived. And lived. For 81 days I fell more and more in love with her. The moment she died, it felt like a part of me did also. The very thing I was hoping to avoid by guarding that heart of mine became a reality. And I don’t regret it at all. She knew a great, big love and I held her every moment that I could.
For several years, I felt cheated. I wanted more.
81 days wasn’t enough. Until it was. When 81 days became enough, I became grateful. When my heart softened, I saw her days we had as a gift, rather than focusing on all those we will never have. That doesn’t make grief disappear. It doesn’t change the enormity of her story in our life. It does help my ability to accept what is.
Shouldn’t we all be reciting the Serenity Prayer on the regular?
Grant to me the serenity to accept that which I cannot change;
Courage to change what I can,
and wisdom to know the difference.
I mindfully make an effort not to imagine her at each “missing” age here on earth. I avoid those fruitless thoughts that go something like, “This year, she would be starting ____ grade.” Or, “I wonder what theme her party would have been?”
Those are what I call Rabbit Holes. And they have no place in my life…anymore.
It will never end. Bereavement. Parents outliving their children. It surprised me how many times I was asked to reach out to a person’s loved one or friend who was in a similar situation with their child. I didn’t feel like an expert, but I understood that perhaps, I could offer something they simply couldn’t understand.
I quickly learned how humbling it is to be on the other side. The side of watching your friend grieve. I arrogantly thought I would be super helpful as I basically hand-held my new friend through her experience. I would just word-vomit exactly how it went for me and she’d be ahead of the game. Except it isn’t a game, there are no instructions, there isn’t one way to the right way. It’s grief and it’s as unique as our DNA. She didn’t need me to guide her through my grief. She needed to know I was there for her very unique journey. But was I? Did I know how? In some ways, going through it yourself is more simple – you have no other choice but to survive. Being there for someone who is on the Grief Roller Coaster is uncomfortable at times. Are you catching them on an uphill climb or on the way down? Are they holding on for dear life? If so, they might not be willing to loosen their tight grip to let you hold their hand.
People often ask me what my best piece of advice is for parents in similar situations to ours. I would rather they ask me how to win the lottery. I have better odds at answering that one correctly.
If I had one piece of advice, it would go something like this:
Lower your expectations of people and raise your expectations of Jesus. It sounds harsh but stay with me. Grief can somehow heighten our expectations of the people in our lives. Of our spouse, our family, our friends and especially of ourselves. Somehow, we expect these people in our lives to understand, to be emotionally available, to be there in ways we haven’t communicated and on and on. We expect that we, ourselves, will handle it all with strength, and so that brave face goes on and leaves little room for grace. People will fail, we are imperfect. Don’t hold the people, yourself, to standards that are impossible to meet. DO hold Jesus to the highest standard. Ask Him to meet you right where you are. Beg Him not to leave you there though. Expect Him to carry you in the depths and to be right beside you in the peaks.
They really mean well, I promise they do. They say the things like, “You’re so brave.” And, “God won’t give you anything you can’t handle.”
Truth: You might be scared as hell. You are still brave. That’s okay. Diamonds are multi-faceted, too, darling.
“You might be scared as hell. You are still brave. That’s okay. Diamonds are multi-faceted, too, darling.”
My personal belief is that in life, certain things will absolutely happen that we cannot handle. Alone. This is when how we do faith matters. It’s one thing to have it, but have you ever considered the act of faith rather than obtaining it?
“I don’t need counseling.” I can’t begin to count the number of times I thought it, said it, cried it. People kept saying I was so brave and strong and all the things. I’m a person of faith. I didn’t need counseling. I could handle it.
Except that I couldn’t.
Somewhere along the line, my darling husband became my therapist, my counselor, my psychologist. Bless. His. Heart. He didn’t complain, he never cut me off, he was always there, doing his darnedest to help me put the pieces together.
Eventually, I had what appeared to be an anxiety attack. I hadn’t ever experienced one prior, but it was a wake-up call, and a rude one.
My first visit was like drinking tea on a cold day by a crackling fire. Peaceful, welcoming, like home. My only regret was that it took me so long to take that step.
Why? Pride, mostly.
My husband is a talented, gifted man who loves me deeply and would sacrifice much for me. However, my choice to see a professional to work with me through the death of our daughter lifted a weight neither of us knew was heavy on our marriage. He was burdening a load that was too heavy for even him – and he works out, folks. I felt lighter too. I felt validated.
Validation is something humans desire and I didn’t realize I was searching for it until I received it. It tasted like sweet honey.
It didn’t make it okay that our daughter died. It made it okay for me to feel how I felt about her death.
And about who I became after…which leads me to,
It’s been five years. That one last breath she took was five years ago on Saturday, August 16, 2014. While I have grown in many ways, there are some ways I find I’m surprisingly tender. Our family life looks completely different since that day. We have relocated and established roots in a different town. We had our third child who is now three. Our son is halfway through both elementary school and braces. We have added nieces and nephews, friends and neighbors, said goodbye to family members and helped people in their own journey of grief.
And yet…she is still woven into it all. I can’t escape her sometimes. Isn’t that true of our kids? When we need a moment alone, and they are clinging to our leg? Each passing year has had its own challenges and theme of grief. Some are more hope-filled and joy-seeking. Others are weepy and sad. This year has been hard, as in steel. I’ve been a smidge angry. I’m frustrated with myself. The version of who I’ve become at times. The impatient, short-fused, tired, insecure, wandering version. I have found myself longing for the me I was before her. I don’t blame her for who I have become. Thankfully, however, I believe I’m unfinished and still unfolding. I believe in a God who shows sweet and unconditional grace to offset my laundry list of imperfections.
The death of our daughter does not define me. It has shaped me. For better or worse. That part is still to be determined. But, I’m clinging to hope. I’m choosing to keep going. I’m asking for forgiveness and embracing grace.
Showing up. It’s the theme to our daughter’s 81-day life. People showed up. After she died? People showed up. To my humble amazement, people are still showing up.
And so, that’s we do in our family.
We can’t always, it just isn’t possible. But when it is, it can make all the difference. Right now, are you thinking of the last time someone showed up for you? Think about the last time you showed up for someone. It’s good. It doesn’t earn you points. Don’t do it with strings attached. Just go, be there. Mow the lawn, take the groceries, take coffee, mail a gas card, send a pizza, write a letter, sit at the hospital, play with their kids, pay a bill.
Be gentle and respectful, but go.
Go to the funeral.
Plant something in honor of your loved one’s child.
Tell people about their baby.
One year, several of my family and friends shared about Audrey on Facebook, it was incredibly endearing to me. They had their own stories with our daughter. It impacted me deeply to know they were thinking of her.
You can show up in ways that don’t require you to be physically present. Consideration goes a long way. If you aren’t sure, ask their best friend, their spouse or parent for an idea. Just dig in and show up.
Never is the only too late.
“Mistakes can be seeds that bloom into perspective; grow into your wisdom.”
In a brief moment of still and quiet, I’m reflecting. On what exactly? All of it, really.
Because, it’s a ripple-effect. One cannot be separated from another.
Let’s back up, shall we?
Today, for the 2nd year, Wings for Audrey hosted a lecture during Palliative Care Week at OU Children’s Hospital.
Last evening, the man I get to do this life with and I had the opportunity to meet, get to know and break bread with Joel E. Frader, MD, who traveled in from the Children’s Hospital of Chicago as our chosen speaker this year. We were also joined by Palliative Care physician, Dr. Rachna May, and Chairman of Pediatrics, and one of Audrey Claire’s ICU physicians, Dr. Morris Gessouroun. As per usual, I asked too many questions, but I unexpectedly found an even deeper respect for all that Palliative Care is.
Today, I listened to this man, truly an expert in Palliative Care and Ethics, as he brought to light how important the whole patient is. At the hospital where he works, they offer fetal palliative care. Fetal.
Let that sink in. When the baby within the womb is already fighting a battle, or will upon birth. That very thought broke me. I imagined how our story might have been even more whole had we had a team of Palliative Care experts carrying us through, from the beginning. Because, you see, therein lies the very misconception. Palliative care DOES NOT equate to end of life care in all scenarios.
Instead, change your perspective. Imagine Palliative Care being the wingman to the patient and their family, to help carry them through the uncharted waters of the storm they find themselves in.
As I clung to the words Dr. Frader shared, I wasn’t surprised but rather inspired by his use of the terms “I think” and “I feel” – because they were about equal. There is a beautiful balance when providing a patient whole, comfort care no matter their situation. That balance lies between thinking and feeling. Dr. Frader communicated that in a way that even this non-medical mother could grasp and understand.
What Palliative Care lacks is arrogance. What it is overwhelmed with is acceptance. It is the very act of meeting people exactly where they are, acknowledging their whole story and partnering with them to aid in providing the highest quality of life.
The lecture came to a close and I went directly to a meeting to discuss the potential Comfort Care Room. Enough time has passed that I assumed I would be walking into a sort of “let her down easy” conversation.
I could not have been more wrong.
The thing about the lectures is that they are progressive and in one way or another, do enhance the patient’s experience at OU Children’s Hospital. There is a part of me, the mama part, that simply cannot let go of something more tangible. A way that directly impacts the life and the inevitable death of some. Wings for Audrey has the opportunity to work with the hospital to create a multi-faceted space that could heal in some cases, but also allow the most comfortable and beautiful room should the final hours come.
As more details come together, you know I’ll share, because it’s from you, too, isn’t it? Family, friends, donors…it is a way to honor a life enough to give others in the same position a similar experience.
The meeting itself was worth celebrating. I went in expecting a no and walked out with support, with a yes. It doesn’t change our story. It doesn’t change what was. It can change the story for others.
My hope does not lie in this room. My hope does not rest in planning a lecture for 2019. My hope is not dependent on the perceived success of Wings for Audrey. My hope is in the Lord. The One who keeps and protects our daughter in Heaven. The One who wrote her story as He knit her together within my womb. The One who never promised easy or happy, but takes me as I am.
When I lost her, I found Him in everything.
Love + Hugs, Rachel
Those of us who have the unique privilege to be born share something in common – we all have one birthday. The actual day we are born. The date listed on our birth certificate. The day we became separated from the woman who grew us in her very womb. That’s our BIRTHday. For some, there are many anniversaries of that single day. A celebration takes place and candles are added to recognize turning another year older. For others, that number of candles seemed far too few when the life ended. And even others still, didn’t quite make it to a single candle. That’s the story for our Audrey Claire. Her one and only birth day was the day she was born, May 27, 2014. Four years ago today, we said hello to a miracle and so began her 81-day life.
Each passing year has a little different for me on the day of her birth as I reflect on her, her life and the journey since she left us.
If you were to ask me how I’m feeling today, the truth is, right now, in this moment, this space? I feel whole. I accepted two incredibly simple, yet deeply profound truths that I needed to come to in my own time.
First, I had a conversation with a person I trust and doesn’t lightly tap dance around conversations, instead blazes to the heart, ready or not. At one point, he reminded me that Audrey has eternal life in Heaven. HEAVEN. She doesn’t need me. Like, at all. At first, yes, I had all the mama feels. I was whiny and my feelings were pouting. I wanted her to need me. But, no – no, I don’t. I cannot begin to fathom how incredible her life is now. There is something weightless about this feeling for my child, knowing she has more than I could possibly give her. She. Doesn’t. Need. Me. Isn’t that wonderful?
And secondly, I often view Audrey’s life as one cut short. When I mindfully accept her 81 days as her full life, her story is whole. I can get lost in the “I wish’s” and “if only’s” and that wasn’t meant to be – what was were her 81 days. She lived her whole life and not a minute less. I’m not missing moments with her. No. I received 81 gifts. Of course I wanted more. It’s my flesh. My human. There will be days I still wish for and dreams I mourn, but more and more often I’m seeing Audrey whole.
This year, I’m honoring and celebrating some people on behalf of Audrey. I had the unique and humbling opportunity to see life through her eyes, noticing the people. People make up the great love song of her life and I want to make certain they know – they mattered then, they matter now…they will always matter.
That being said…when I made the decision to share the life of Audrey in this written and open way, you – yes you, became a part of her lyrics. Do I regret the decision? Not a single, typed word. Her story is written down, chronologically saved, for my own memory, but mostly for Cooper and for Emma to know their sister’s life. Her story has a depth and a texture that it otherwise wouldn’t have known because you chose to know her and love her right along with us, in real time – through the celebration and the grief and the layers in between. Even though she is gone, you have helped our family in beautiful ways through the years.
So, today, four years later, let us celebrate the day Audrey Claire was born alive and breathing. The day hope filled the hearts of those who love her. The day a miracle was gifted to us. The day a mom and a dad saw the face of their daughter for the first time and chose faith beyond fear. The day Jesus broke down the barrier of their guarded hearts and love truly conquered all.
Cheers to you, Audrey Claire! You are the gift that keeps on giving…
This art piece was a gift commissioned by PawPaw Mark by talented artist, Michael Volpicelli, they met while his wife was expecting their first daughter and was delivered by Mark. The words used to create the art are literally Audrey’s life. Mark sent certain blog entries from her life to Michael and together they determined what would be used. Every time you look at the art, you see a different word or phrase.
(Scroll to bottom for Audio)
Somehow, along the way, writing has become like breathing. There are times I feel as though I might burst with words.
I think a part of my affection for the written word is that I have, what seems like, an unlimited number to “tries” to express myself. If it isn’t quite right, I get to start over, begin again or try tomorrow.
I love the backspace key. It is the reminder that imperfection is a given, inescapable, but there is an eraser. Sin. Jesus. I can find Him everywhere. Even on my keyboard.
When I say words out loud, there is nothing particularly special about how they sound or the way I mush them together to form sentences. I’ve never really been slow to speak and quick to listen. I speak too quickly, resulting in thoughts that aren’t fully formed. And, like the tube of toothpaste lesson we all know and love, once it’s out there, we can never get it back.
The written word feels relatively safe to me. Sure, at times I bare my soul and that is a risk, yet one I am willing to take. That is a part of what I allow by sharing, by opening up and, in turn, by allowing you in.
Yes, writing. Just as I really settled into it, when I found a comfortable position, I was called to move. To stretch. Just maybe…to grow.
It is one thing to be asked by an organization to speak for a quick 10-minute ditty at their secular-type event. I have come to enjoy those and my level of fear has gone way down…however.
However, when I was asked to speak at a faith-based women’s event about my personal journey of faith through the love and loss of our Audrey Claire, I had to really think about my response.
My head reminded me that I’m untrained, unqualified and ill-equipped. Who am I to speak in front of women far wiser and experienced than I? My journey was, is and will continue to be messy.
My head was actively shaking “no” as my heart tugged my voice to say “yes”.
I could have written a book in the amount of time I spent preparing and over-preparing for my evening with these women. I wanted it to go flawlessly. I wanted them to believe they chose well when they asked me to do this. I didn’t want to let them down. Or Audrey. Or myself.
And certainly not God.
And wouldn’t you know, there were some things that tried to creep in. Only the sly works of the Enemy, I’m certain, but at one point, I had a conversation with my friend and Father and said, “Dude. If this is what you want me to do…then, let me. I trust that if you want me to share this story, YOUR story, you will let me. But, you have to LET ME. More barriers that keep me from doing this will tell me it wasn’t meant to be. It’s up to you, Man.”
And you know what?
I had a blast.
I met some wonderful women, shared a little story and did something that scared the living daylights out of me.
I’m sharing my words a little differently this time. Should you have 30 minutes to spare (yeah right…who does?), I’ve included a “podcast-style” audio clip below of the words I shared. Sure, I could let you just read it, but I was asked to step out from behind the computer screen and use my voice, so perhaps this time, you will use your ears to listen with your heart.
I want to thank a few, because it isn’t possible to do something like this without a tribe:
Cristin Shelby You asked and I said yes that ended with what sounded like a question mark. My yes was reluctant at first, but your encouragement and enthusiasm truly helped me feel able. You made me grow, and for that, I’m not sure there are ever enough thank-you’s.
Chris My mind has been preoccupied and full. I’ve been committed to this and you only supported me – in fact, you nudged me onward. You make me brave, darling husband.
My Mom + Debbie You were my team, my support, my roadies, my eyes in the crowd. You keep showing up. You love Audrey as much today as you did the day you said goodbye. You never tell me it’s enough. You were my two wings that made me fly and try.
The Men My dad, my brother, my pastor, and it goes on. You encouraged. You gave me feedback. You helped me say yes when I thought I should say no. It was a women’s event, but I had you there with me. You were tucked in my heart, in my head and in my notes. You made me better…you make me better.
My Girls You said do it. You said it would be important. You are my bright spots when the shade is dark, gals. You are ever-present. You are a continuous and beautiful good in my life. I need you.
Cooper + Emma For when I wasn’t there, forgive me. One day, you will understand, sweet darlings. I didn’t sacrifice for you this time, I sacrificed time with you to be faithful to God. I hope that I can that explain that someday. For today, I love you, bugs.
Good Father I wrestle sometimes, I know. I ask so many questions and I don’t always understand. But I see you, God. I believe that you are Good…even if. Even when. I’m seeking Heaven, imperfectly. Flawed. Broken. Messy. Meet me where I am…but, please oh please, don’t leave me here. Make me better.
I’ve learned that in my deepest, darkest moments, writing is my catharsis. I purge the cluster swirling in a non-stop loop between my heart and my mind. Because, sometimes I reach what feels like the end of my rope, my full capacity, my limit in totality. I’m more afraid of the consequence of holding it in.
This weekend, I attended a gathering of wisdom. I turned down the volume of the noise that seems to be drilling into my head in so many areas of my life right now. I wasn’t sure what I wanted to get out of the conference – I simply wanted to be present; I wanted to be able to listen. I was one of hundreds of thousands of women around the world who listened to the same speakers, but did we hear the same messages?
I attended this conference after a tough week. I was challenged as a mother, as a designer, as a believer, plus my immune system shut down. I was drained, weak and clothed in a thin layer of apathy from being faced with a week of life’s opposition. I needed refueling.
What I didn’t expect was a reckoning.
Profound were the words that packed their way into my soul over a day and a half. Every quotable line dripped like honey and was worthy of being in a song. Eventually, I had to stop writing each and every astute point because word-for-word dictation was not actually my goal for the weekend.
When I put down my pen, in my stillness, I winced when I realized that there are still some dark corners lurking in the story of my faith. You see, a few years ago, I was faced with an opportunity to be obedient to God. After three decades of being the “good little girl” and being patted on the head by God, or so it seemed, obedience looked like choosing life for our baby girl growing within my womb who was imperfectly made.
Growing an imperfectly formed child was a daily opportunity to allow God to meet me where I was. I did the best I knew how. The truth is, I hadn’t “needed” Him on a daily basis in my then 30 years. We had an understanding, so it seemed. “Be a good little girl and I’ll pat you on the head, mmkay?”
We chose life. She was born and miraculously lived against the odds. You see? He kept His end of the bargain. He affirmed my obedience. It was well. Though, not perfect. She was sick and needed a host of medical interventions, but alive and breathing when medicine thought she might not.
The days went on. We knew tall peaks and deep valleys. I stood on the foundation of the faith that had been instilled in me through the years. And remember, He and I had an understanding.
It was at exactly four weeks old that her heart was cut open and her life was somehow saved by a host of cape-wearing surgeons, nurses, and the like. Another pat on the head, whew. “Keep the faith, Rachel.”
This daughter of ours recovered eventually. She would never be normal by the standards of the world. She would never look quite like most or live without complication, but she was on her way home to us, her family. We had prepared her room. I had become educated on her feeding tube, infant CPR, oxygen, pulse ox, ordering medical supplies, and the list goes on. We were ready.
Throughout the pregnancy, her terrifying birth day, seizures, open-heart surgery, and so much more…my mutual understanding with God remained. It wasn’t easy. It wasn’t pretty. It wasn’t comfortable. But, I truly felt blessed.
He took her anyway.
As quickly as a wave can destroy that in its path; He took her anyway.
After 30 years of “good little girl” moments; He took her anyway.
My obedience of choosing life for this child; He took her anyway.
What I realized in my stillness, gathered by a host of faithful, incredible women, is that I have some dark corners to illuminate.
I am confident that I have appropriately and bravely grieved the death of our darling Audrey. I am in a healthy place with our second born. Sometimes I suffer from my own version of “phantom limb pain”. I say that with respect to those who literally do. I occasionally ache for something, someone that is no longer there. It hurts when I want to hold the child I grew, the daughter I embraced, the baby I knew. I believe I will feel a certain amount of pain and longing for her until the day she races back into my arms. And, I know she is whole, perfect and surrounded by the giggles of other little ones in Heaven.
What concerns me is the wrestling match I find myself in. I recently heard a man I deeply respect speak about what it means for us, as believers, to say “God let me down”. I am harboring some resentment toward God and I am only just now coming to recognize it. Is it possible that I have felt a sense of grief for the “mutual understanding” that I thought I had with God? That I was sort of “mourning” the realization that my theology was incredibly flawed and my worldly goal of making the “right” decisions was less about His glory and more about my reward?
Have I really been keeping one foot out the door just ready to bolt when I am faced with turmoil again? Because, what He taught me is that, He’ll take her anyway.
Will I temper everything against the death of our daughter for the rest of my days? Will that ever end? What I heard this weekend is that “when we don’t give things to Him, we forfeit His grace.” I know this to be true, but my own journey of faith seems to be knotted with the life and death of Audrey. And that is complicated. When I think of God, it is hard to separate Audrey.
He took her anyway.
He took her anyway.
Yes, Rachel, He took her anyway.
And the light bulb pierces my bloodshot, teary eyes as I type is this: I. Am. A. Sinner.
I am broken, flawed, imperfect and in need of a Savior.
In various ways over the past several years, I have been deeply focused on the purpose of our Audrey’s life. When asked, I speak, although I am not a public speaker. I do this to honor her. I write, although I am not a writer. I do this to honor her. I raise money, although I am not a philanthropist. I do this to honor her.
What if part of our daughter’s purpose was to show her own mother that I. Need. God.
What if, because of her, I have to grow up.
What if her life and death taught this woman that, without Him, I. Am. Nothing.
What if she is my arrow to Him – the reminder to honor HIM while loving her.
I’m on my knees.
As we sat across from Dr. Lantos on Thursday evening, I remember wishing I had a script or at the very least, rehearsed what we might say to him. I wanted to impress upon him the pride we have for our daughter while sneaking in appropriate medical prose. He has spent his life’s work on cases and patients similar to Audrey. Was her story unique? Would it be special to him?
Perhaps the most endearing quality about this man – physician, author, speaker, professor – was the way he genuinely cared for our daughter even, and especially, in her absence.
We would ask him a question about his life, but more often than not, he would pull a swift 180 and somehow keep asking about our life and story. I’m talking a feet-on-the-ground kind of humility, folks. An evening that began with a professional handshake ended hours later with the warmest of hugs.
Is it possible that perhaps his ability to provide Palliative Care never ends, even when the patient’s life does? Part of the definition of Palliative Care is to “improve the quality of life for both the patient and the family”. What does it mean for a person to add quality to life? Excellence. Value. Worth. That’s exactly what he brought to our dinner table and thus, to our life.
And that was just over dinner, dear friends…
Let me start out by informing you that Palliative Care Day at OU Children’s Hospital was an all-day event that completely sold out. Registration closed a couple of weeks ago, in fact, they opened an overflow room to allow for additional participants. If you aren’t smiling or doing a little dance, check your pulse! Dr. Lantos provided two of the lectures that Wings for Audrey hosted.
The auditorium was peppered with healthcare professionals that ranged from neonatologists, pediatricians, NICU nurses, chaplains, PICU nurses, palliative care experts, and many more.
Dr. Lantos isn’t loud or demanding – his topics are. His data often requires a double-take.
He didn’t travel to OU Children’s Hospital to keep us still. He shared his time and expertise with 300+ professionals to push the envelope, to open all of our minds, and ultimately to help us grow.
And that, right there, was the very point of Wings for Audrey from conception.
The truth of the matter is when we set out to raise $100,000 just over three years ago, I was still moving in slow motion through life after the death of our daughter. It didn’t take long, however, for me to go all in. I poured just about everything I had into Wings for Audrey. For the better part of a year, I’m willing to admit, my days, my thoughts, my energy…my life was Wings for Audrey-centric.
And then I realized that no amount of funds raised would make my grief end. Incessant event planning would not bring her back. I allowed myself to accept these truths. Wings for Audrey became less about filling a void and instead a way to honor and tell her story while giving back.
This week was our first Wings for Audrey event. What went into this? Everything really. The death of a child, ultimately. And then, a thousand steps thereafter.
I’m overwhelmed as I look back at what all went into getting to this point. We are profoundly grateful to our family, friends and donors.
To OU Children’s Hospital & Foundation, thank you for believing in Palliative Care and introducing our family to Dr. Lantos. Thank you for your willingness to move forward.
And finally, Dr. Lantos, thank you just isn’t enough. You honored the story of our daughter by sharing your time, expertise and mostly, your self with us and with the State of Oklahoma. Your work is important and you make those around you feel important. You made our goal a reality in a beautiful way – thank you for your gift.
Last week, I promised you an update on Wings for Audrey. Hang with me while I give this the detail it (and you) deserves.
Let’s back up a little, shall we? It was in June of last year, 2016, we all reached our goal of $100,000.
Many of you have been with us from the very beginning. You have followed Wings for Audrey from its conception. Our collective agreement was to fund a lecture program. To educate, inspire and empower those who make it their life’s work to heal children.
As time progressed and discussions turned into potential plans, something was missing.
I, personally, felt a strong absence, although I couldn’t pinpoint what it was.
A year’s time has past. During those months, Wings for Audrey has grown to over $113,500, our third child has become a one-year-old and I discovered what is missing.
The wonderful thing about a lecture program is that it is an investment in the future; it creates the potential for lives to be impacted for the better. My dream is that Wings for Audrey would ALSO honor Audrey’s memory just as it was.
Can Wings for Audrey do both? Be both?
Early this Spring I had a meeting and another this past Monday to discuss just that.
Part 1 is a GO and it’s really exciting:
On November 3rd, we are honored to be hosting the
Wings for Audrey Palliative Care Lecture Series
John D. Lantos, M.D., Children’s Mercy Kansas City
Leading Expert in Bioethics & Palliative Care
Bioethics? Palliative care? I know, some of you reading may have checked out when you read those words. Please don’t.
At first, I wasn’t sure how this applied to Audrey’s story. I didn’t understand how hosting lectures on topics of this nature made sense. Let me give you a relatable example…
If you read the story of Audrey, you know her chart was thick. She had a plethora of issues. Each week something new came up. She failed to thrive. Period. But, for the most part, her care seemed to be treated acutely. What I mean by that is she had so many serious conditions, the focus seemed to be on whatever “fire” was burning at the time. Rarely, if ever, did I hear a report on the “whole picture”. I remember one particularly dark day (both literally and figuratively), Audrey’s team came to round on her, I only listened, didn’t make eye contact or ask questions. The team was neutral. Audrey wasn’t well yet she had no fires to put out. She was simply alive.
I spoke to the Nurse Practitioner and said, “It’s like they are giving up on her.”
This was a couple of weeks even before she passed away. I believe this is when a Palliative Care Team would have been in Audrey’s best interest, and ours. A team that views the patients as a whole, to provide an extra layer of care, communication and support.
And an example of bioethics? This isn’t something I have shared much, but I’m allowing you in because I believe it helps you understand a glimpse of what families go through at times.
On Audrey’s last night, you know, when the swarm of doctors were doing everything they could to keep her heart beating? You may recall the last resort was to put her on ECMO. In the chaos and hustle, we, her parents, were asked what we wanted to do. Move forward with ECMO?
I wanted a coach. Someone who could have called “TIME OUT” for us. I turned to one of the doctors and said, “Are we forcing her to stay alive?” Then the same question to Chris.
This was our experience with bioethics. When do you keep fighting and when do you let go? Thankfully, we received a clear answer through medical advisement and deep prayer.
Children’s Hospital at OU has made Palliative Care an important element since Audrey passed in 2014. We are eager to support their efforts and look forward to the brilliant way Dr. Lantos will fill the minds of people from all over Oklahoma this Fall.
Stay with me, team…the second part of Wings for Audrey…remember, the dream?
What I’m asking is a big ask. It’s a huge sell. It’s something that not everyone can easily get on board for.
On Audrey’s final day, we were incredibly blessed with being moved to what is called the Comfort Care Room. Typically, this room is reserved especially and only for Oncology patients and their families. On this Saturday, it was not in use, which is rare. Audrey was allowed to be there during last hours. It didn’t feel like a sterile hospital room. It was warm and memorable. Her passing was in a place that our family will cherish forever.
I want to develop a Wings for Audrey Room. A beautiful room that allows families to be with their little one as they take their last breath, or perhaps have passed and the family has just arrived, or even as a room where the family has space to make the most difficult of decisions about their child. Many hospitals have what is called a Bereavement Room, some especially for the NICU.
When I think of this room, I understand how difficult it might be for some to see the value. Hospitals are meant to heal, to save and to promote hope. I agree. AND, our story went differently. We had a daughter who lived a life within the walls of a hospital and her last day was as beautiful as we could have imagined for her. We want the same for more patients and their families whose stories are like hers and spend their last day at Children’s Hospital.
When we think of the whole patient, from beginning to end, how do we value their life even if their heart beats one last time? How can we honor their family? What if there is a place intended for just this purpose?
This dream is even more difficult than you can imagine to bring to fruition. Even a small space is a sacrifice of incredibly valuable resources at Children’s Hospital. It could be years before this might be able to happen, and that’s even IF the idea is approved by all the right powers-at-be.
The naïve girl in me thought this would take little convincing and it would be underway quickly. Patience isn’t really my strong suit, but I will be for this. It is worth it. I will fight for this because she deserves the honor. Because the children and their families who might have to spend time in this room are worthy of it.
For now, the announcement of Dr. Lantos and the lecture series this fall is something for us all to be proud of. We did this together!
As I know more about Children’s allowing us to develop a Wings for Audrey Room, I will let you know.
Thanks for hanging in there, with this post and through it all, gang. You really are the best of the best.
Love + Hugs,
Three years ago today, she took flight…I honor her by remembering the moments.
I didn’t realize the last time she opened her eyes would be her last. I wish desperately I could bottle her scent. I didn’t catch her last cry or yawn or sigh on video. I didn’t get a warning to tell me I was losing her. It happened before our very eyes, we had no control.
She had been doing well. Well enough to be scheduled to move rooms and go home within a few days. But on Friday, things changed. She started struggling early in the morning and continued throughout the day. She required more and more breathing support, at one point she had to be placed back on the high flow nasal cannula. It didn’t make sense, nothing explained this change. Her chest X-ray appeared the same, a heart echo revealed no changes. Blood work didn’t indicate infection or any abnormal results.
As the day turned to evening, she was stable and resting. We took the opportunity to go eat dinner. Chris wanted to go back to the hospital to tuck her in while I took Cooper home to rest. Not uncommon, and evenings like this had happened many times before.
But this night was different. On this night, my phone rang around 10:45pm, about 45 minutes after I fell asleep. Chris was calm but to the point, “Your dad and I are here. Your mom is coming to get you and Jason will stay with Cooper.”
My heart rate skyrocketed, I could hear it…I felt my pulse drumming throughout my body. It almost hurt. I didn’t follow the rules…instead of waiting patiently for my mother and brother to come, I got in the car, asked a neighbor to come be with Cooper and raced to OU Children’s.
A drive I could do in my sleep by now. A drive that became my daily commute. This drive felt different. I couldn’t get there fast enough.
I ran in. Literally, I ran through the empty, cold halls of the hospital, impatiently kept pressing the “Up” button. Never has an elevator ride seemed so long. Getting to the 7th floor seemed impossible. But in reality it didn’t take long at all.
When the front desk saw me coming, they didn’t stop me to check in, they simply opened the doors.
Those double doors I walked in and out of hundreds of times. This time, on the other side was an outpouring of nurses and doctors and equipment from her room.
I saw my baby. Only wearing a diaper but once again, covered in IV’s, lines, leads, probes, and so much more. Most importantly, she was intubated. Although she had a machine doing the work, breathing for her, it wasn’t enough. She started crashing. When her heart rate reached the 40’s as opposed to her normal 120’s, they quickly administered epinephrine. She responded well. Her heart rate went up, her saturations climbed higher and higher.
At this point, we were confused and frustrated. We hadn’t seen a cardiologist yet but the neonatologist was communicating with him the entire time. The thought was to put Audrey on ECMO (Extracorporeal Membrane Oxygenation), a procedure that uses a machine to take over the work of the lungs and the heart. This would allow her body to rest while giving the doctors a chance to learn what the culprit was. But, we were told the risks of ECMO were likely as high as opening her up and doing surgery in her state. There didn’t seem to be a choice.
Everything was set up. The baby rooming with Audrey was moved out. ECMO machinery brought in. Blood, so much blood, was hooked up and ready to go. Just about the time they were going to start, the cardiovascular surgeon, Dr. Burkhart, and the Chief of Pediatric Cardiology, Dr. Overholt, got to her room. They wanted ECMO to hold until they could have a chance to be brought up to speed and analyze her situation more thoroughly.
Dr. Burkhart operated on Audrey back in June during her emergency heart surgery and has been rounding on her daily since then. Dr. Overholt, however, was new to her case. A fresh pair of eyes.
He was handpicked to be there at just the right moment. After careful study of her heart/lung catheter procedure from two weeks ago, he discovered a game changer. He revealed to us that the culprit was not Audrey’s heart, nor was it her small pulmonary veins. It wasn’t her Dandy Walker syndrome. It was microvascular lung disease. Not in just one lung, but in both. Since her heart surgery, they assumed that her right lung likely wouldn’t last. With small, obstructed pulmonary veins on that side, it would have been expected for her to lose the lung completely at some point, living with only her left. Severe microvascular lung disease in both lungs was a new finding that Dr. Overholt discovered. His fresh eyes were able to see something different. Something no one was looking for, because as we were told, it is a miracle that she lived as long as she did. This disease in the lungs is progressive but started when she was in utero, they said.
Heart surgery to fix her Tetralogy of Fallot and to enlarge her pulmonary veins wouldn’t help her lungs. No treatment would save her life.
Plans for ECMO were put on hold. As we met with the doctors, gained a clearer picture of what was happening. ECMO would have given her body a chance to rest, but it would have prolonged the inevitable. Choosing not to do ECMO would allow us to have time with her throughout the rest of the night and next morning while family traveled in to say goodbye.
She remained sedated throughout the night. Her heart rate was consistent and, while too low, her oxygen saturations were stable. The team at OU made us as comfortable as possible, bringing in recliner chairs, water, blankets, and so much more. But sleep didn’t happen. A few minutes of rest here and there were appreciated, but sleep wasn’t important.
The sun started to rise. Another day began. Deep down I knew this was the last morning she would be with us. I knew this day was her last.
Throughout the morning, we cried over her, laughed with each other, played special music, used clay molds and made an ornament of her hand and foot prints, got her “going home” outfit all ready. Late in the morning, the team moved Audrey up to the 10th floor to a beautiful suite called the Comfort Care Room. It was very big with nice furniture. We were asked to go up before her, the ride up with her could be difficult and it was. They had to stop the ventilator during this time and needed to “bag” her manually. She quickly began to desaturate and they knew they needed to quickly get her hooked back up to the vent. Once they did, she stabled out a bit but she was battling. By this time the family had arrived. And really, it was time. She stayed with us as long as she could.
We hadn’t ever had the chance to bathe her. It is something I wanted desperately to do. And they let us. Chris and I got to clean her perfect skin with warm soapy water. To touch her soft head and see her precious back that we never really did. We cleaned under her arms and between her tiny toes, behind her ears and over her many scars. It was such a precious memory. Such an act of love. Bathing our daughter before going “home”. To be clean, to be even more pure than she already was.
We then dressed her. First, a strawberry diaper. These were a signature during her life. Never has a diaper been put on more perfectly. The velcro straps lined up, the flaps around her bottom and legs ruffled sweetly. Then, a beautiful, classic pink outfit, short sleeves and legs, with little flowers across her chest. Her chest…the very area that took her life…adorned with tiny flowers. And, of course, a headband.
She looked perfect. Beautiful. Peaceful. Without struggle. Free of grimace.
At this time, we all held her. While she was still with us. We kissed her. Wept. Hugged.
Our dear friend and Chaplain, Trisha, came to be with us. To dedicate this baby and to pray over her. She was there the day Audrey was born, the day she went into emergency surgery, many days in between, and then on her final day.
Once her family said goodbye, they gave Chris and I privacy while the extubation took place and we helped her go.
The moment the tube was removed, she didn’t breathe once. They gave her to us. A perfect angel.
We cradled her in our arms. Took her in. All of her. We loved her. We sent her to Heaven. We trusted her to the Lord. We helped her fly.
Her heart slowed. Dr. Bhatti, the incredible neonatalogist with us throughout it all, checked her heart rate. It had slowed to about 20 beats per minute.
We told our baby it was okay to go. Told her how much she is and always will be loved. That she changed our lives for the better…for good.
And then she gasped. Though it was a tiny noise, it was loud. It was final.
We all knew in that moment..we knew she was gone.
Dr. Bhatti checked her heart and confirmed it…
At 2:27pm on Saturday, August 16th, Audrey Claire Leslie flew home.
81 days + 46 minutes after she was born, she was gone.
For the next couple of hours, we simply snuggled. Family trickled back in. We took pictures with her.
I laid on the couch with her pressed against my chest and wept, smiled, and felt so much love. I couldn’t move. Not until Cooper wanted to come in.
Cooper said goodbye in the best way he could understand how…he drew a picture and showed her. He was confused and a little detached but we didn’t force anything. He saw her in her final state. We were there with her as a family.
She was clear. Her body failed her and she let us know it was time. She had not one struggle or indication of pain. She simply slept.
When it was time to let her body go, the words poured out of me without even thinking. I just said it without control…
“Now I lay me down to sleep…I pray the Lord my soul to keep…”
And He does.
I want it all back. I want her back. Heaven got the better end of the deal. I want to cradle her close to my body. I want to feel her warmth. All the warmth left her sweet body. She turned cold.
The day was gloomy and dreary, then, almost the moment she passed, the sun came out. Tears from Heaven came down for her, then the rejoice of her through those pearly gates shined with golden splendor down on us. The ones left behind.
A message that she was home. A message that she is whole, healthy and loved. Beautiful in the most perfect place.
I miss everything about her. Photos and videos can’t capture how it feels to hold her.
And I never get to do it again. It’s not right. I hurt all over. My fingertips ache, my heart seems to be missing beats, the pit in my stomach grows and the lump in my throat won’t go away.
Her room sits empty, yet so full. It defines so much about her and her life. We created it especially FOR her, once we knew her. Now, her going home outfit lays sweetly in the crib, next to her tiny wrist splints, photos and her hand and foot prints.
We now get to plan a celebration of her life. Her close family was there to send her home, and now her entire family of friends and prayer warriors can help celebrate all that she was, is and will always be.
I have so many ideas, thoughts of how to celebrate her. I want this week to go slowly, because I know after the celebration it will feel…well, I don’t know yet, but I imagine it will have an overwhelming sense of finality.
The rest of the world will move on. The days and nights will come and go.
But how do I? How do we? Faith, trust, love and sweet peace, I suppose. Just as she was at peace when she went, we too must seek this each and every day.
She will always be our girl. Our daughter. Our son’s sister. Our parents’ grand-daughter, a cousin, a niece, a great-granddaughter, a friend, a patient who was loved and adored.
We all lost her yesterday.
But she isn’t lost, she is found. In all of us. You may not have met her but she knew your love and we all help define her.
Let us all love a little better, be a little stronger, live a little braver. Let her legacy live forever in each of us. Let’s all be better because of her…for her.
When we have her celebration of life scheduled, know that we will share the details.
We don’t know what we need now or in the future, but thank you for all you have done and will do.
Our appreciation runs deep and for a lifetime.
Her story continues, as will writing to her and about her. Keep reading. Never forget.
Stay tuned for a special announcement regarding Wings for Audrey next week. I have a meeting with OU Children’s Hospital on Monday and hope to be able to tell you some important updates.
There is a small but important part of my story that I have chosen to share beyond my inner circle. It started as a letter to my daughter living in my womb. It became a way to be a vessel for a little girl who could teach us all a thing or two. When her body left this earth, her story was unfinished. And so I wrote and shared and wrote even more.
I credit my survival of many dark hours to the following:
Faith//I never understood what it truly meant to have faith until life became uncomfortable. 30 years of undeserving comfort built my foundation, but never before had I felt I needed God. It was more like a partnership. I would focus on making the “right” decisions and He would bless them…Oh, if only I could go back and have a little chat with my younger self.
People//I learned a lot about people. I’ve learned it’s easier for most people to celebrate than grieve. Somehow, we were surrounded by an astounding number of family and friends who are the definition of showing up. They showed up over and over and over again. They know the story of Audrey by heart because they were there. And in countless ways, even after she was gone, they have continued to selflessly show up.
Writing//It became many things. An outlet. My therapy. A connection. An escape. It provided a space for me to gather all the incessant thoughts and release them from my fatigued mind. I was surprised by how effective it was. The thoughts and feelings were liberated and set free into the abyss of the World Wide Web so I could keep moving.
Something started to change recently. It wasn’t as distinct as a paradigm shift; it was subtle and bothersome.
I had so much to say. I became overwhelmed and ultimately stuck. It wasn’t Writer’s Block because, of course, I’m not a writer. The harder I tried the more my wheels just kept sinking and spinning.
Frustrated, exhausted and full of tension, I felt like a mess.
I had a fleeting thought that maybe it was time to meet with a professional. But even thinking it to myself made me cringe.
A shameful voice inside me uttered, “You don’t need help. You need to get it together. What’s it going to take for you to be content? No one wants to listen to you whine.”
I see you, Satan.
The truth is, I didn’t even know where to start. I didn’t know anyone who had done anything beyond premarital counseling. I felt a sense of shame saying to a friend, “So, I’m thinking about seeing someone for counseling, know anyone good?”
It’s a little more awkward than asking their recommendation for a hair stylist or pediatrician, is it just me?
Then one day, by no accident, a door opened for me to discuss all of this with someone I trust. What I learned is that this person took the same step and now sees counseling as an important part of life maintenance. I slowly opened up to a few other people and learned that I was in good company. I began to gain confidence in the idea.
It took me some time to finally make the call. But I did.
The day of the appointment left me feeling nervous and anxious. The idea of telling this person my life story sounded exhausting. But I valued that she would be an unbiased, new pair of ears. I feared the label. I didn’t want to be defined as this or that. I wondered if going would make me feel crazy.
I parked my car and took a deep breath. “Just be open”, I thought, “be willing.”
What I learned in the first 55-minute appointment was that I wish I had done this earlier.
But I wasn’t ready earlier. I didn’t think I needed it earlier. I was ready when I was ready.
There seems to be this invisible fence that surrounds “counseling”. I walked along the perimeter, thinking that crossing over was a bad thing. I believed that needing or even wanting to be counseled by someone wiser than me meant that I had failed.
I can’t figure out the hush. I’m often reminded that humans unite in their pain. There is a difference between sharing and complaining. I’m interested in suffering well together. Not everyone is, I appreciate that.
We get haircuts, we bathe, we exercise, we read, we get annual check-ups, we go to the dentist…we maintain our lives. I didn’t understand this before, but what do we do to maintain our minds?
For me, I’m crossing that invisible fence. I’m fighting against the stigma. My brother reminded me just today, “Let your mess become your message.” Writing is a part of me now. I can’t turn it off. But it is one-sided. And, as forthright as I am, I’ll always remain somewhat guarded and protective. I don’t have to do that with my new friend.
I always loved my guidance counselors growing up, I’m eager to have one now, as an adult.