Guess What!?

I know, twice in two days? But, it’s time to share the news. I’ve been waiting because I wanted the loose ends tied up into a perfect bow. Then, I woke up today, 5 years to the day after Audrey died, and decided that sharing now is important. It crosses into all areas of my life: personal, professional and philanthropic.
The idea actually came as a result of the room where she died. The gathering place, if you will, that our family embraced our gal in her last moments.
In our situation, we knew Audrey’s death was imminent, and we wanted the opportunity to call our family and closest friends to be there. Because she was in the care of the NICU, it complicated their ability to allow our large family to be with us in that dark hour. NICU’s are very cautious to protect the littlest of human’s and limits the number of people in, no matter the situation, understandably.
At The Children’s Hospital at OU Medicine, a Comfort Care room was created specifically on the Oncology Floor. Rarely is this room open and available for use by patients from other floors in the hospital. On this particular day, it was. We were blessed in a way that impacted us deeply. They gently moved Audrey to this Comfort Care Room. It was spacious, airy, and ironically warm for a hospital room. There was a couch that would be the spot Chris and I intertwined our arms and enveloped our darling watching her live her last moments. Wondering if she would fight for her life. Breathing a fleeting sigh of relief when she didn’t. She simply slipped away.
I didn’t move from that couch for what seemed like hours. I quite literally curled up with her in a way I couldn’t in all the weeks before because of those life-giving tubes and wires. They were gone. So was she. But I held her body close to mine for as long as I possibly could.
That is what have longed to help give to others. That moment. A pause of comfort with their child, no matter how old.
And so, that idea has now become a reality.

_20190501_Wings for Audrey- Plan & 3D cmp-2

Our family, along with hundreds of donors, fully endowed Wings for Audrey in 2016. At that time, I met with several people at Children’s Hospital about the idea of helping implement a Comfort Care Room that would be available to all patients, no matter what their situation or illness. While we were blessed and immensely grateful for the generosity the hospital provided, most in our situation do not have the same opportunity if their child is not within the Oncology Unit.
It became deeply important to me to make a change.
At the time, there were plans to completely renovate the PICU at Children’s. The PICU would be the ideal place for a room of this kind, however it would be several years before the renovation would be complete.
If you know me at all, I’m the least patient person on the planet. We had worked together to raise the funds. Quickly. And I felt stuck.
We were encouraged to host and sponsor speakers during the Palliative Care Week at Children’s the past two years, which we did. It is something we are honored to have been a part of. Bringing these two speakers, teachers and physicians to Oklahoma to enlighten and broaden those in Palliative Care was remarkable.
And then, I received a call last Fall.
Kendal Pinkston, Dr. Rachna May and Dr. Mo Gessouroun all played an integral role in helping keep my idea of a more available Comfort Care Room alive. And late in 2018, I began working with a team at Children’s, along with their team at Miles Associates, those coordinating the architecture, planning and interior design of the PICU renovation.
We had meetings, emails, phone calls, budget reports, design approvals and more.
I’ll save you the nitty gritty.
I’ll share with you the gold.
It’s here.
The renovation of the PICU at OU Children’s Hospital is complete and in use. And now, the work that has been done to create a Comfort Care space is coming to fruition.
Allow me to help you understand what this means. Because one day, someone you love might use this room. Because maybe you are one of those generous donors who helped make this happen. Because the death of one little girl sparked an idea and now it is going to impact families in their darkest hour. Because this matters.
When a family is faced with their worst nightmare, it can happen slowly or in an instant. A single room for this situation can be complicated. What Wings for Audrey has donated is the ability to turn any room in the PICU into a larger suite with specialty furniture pieces that are seamlessly brought in.
_20190501_Wings for Audrey- Plan & 3D cmp-1Remember that couch I curled up on with Audrey? There will be a couch that expands for added comfort.
I imagined the thing that brings the most comfort to children and their parents, and to me, that is the act of rocking. But I wanted a big, oversized glider. The smoothest motion that almost feels weightless. Oversized to make room for mama to rock her not-quite-teenage son. Or for daddy to snuggle his baby daughter with room for her favorite stuffed bunny. Or even still for big brother and big sister to hold their baby one last time.
The new PICU has an open, airy feel. Lots of windows and the doors are full glass. Privacy is comforting in these particularly tender moments. Not only for the family, but also for the patient. A retractable privacy screen is something that can be used on an as needed basis.
This screen was an opportunity to bring light into a dark moment. It wouldn’t be a Wings for Audrey logo, no, it wouldn’t have anything to do with Audrey or our family – this isn’t actually about us – it’s about them, their family, their child.
And here is more gold. I have had my eye on a painting by Deann Designs called “Carry You” for quite some time. When the team let me know I could choose what artwork would be on the retractable screen, I couldn’t help but think of DeAnn’s painting. But, DeAnn doesn’t know me. Would she allow her work to be used in this way?
All I could do was ask.Angel_Trial-01
And to my humble amazement, she agreed. For a significantly reduced fee, DeAnn has allowed us to use her profound painting “Carry You” as the art on this bigger than life screen.
Wouldn’t it be wonderful if these pieces were never used? Wouldn’t it be lovely if they weren’t needed. Yes.
Healing is the goal at Children’s Hospital. They aim the help children live better, longer. I believe Audrey did. She did live better, longer than she otherwise would have without their intervention.
Until medicine wasn’t enough.
For the stories that don’t go as planned, we want to offer a piece of comfort on behalf of the little girl who helped us learn to let go.
Soon, our family will gather for a small dedication ceremony. It will be something that takes place quickly, with respect and grace, because of course, it will be in a working PICU. What matter least is a photo. What matters most is that families will use these pieces and find some comfort in ways they otherwise would not have.
If you are still reading, bless you. I’ve written a lot in the past 24 hours. My gal pals snuck me away for breakfast this morning and this evening, we’ll gather with family to toast with our traditional “Whispering Angel” wine.
To you, Wings for Audrey Donors, you did this. We rallied and then waited and now, it’s happening. And guess what? The endowment is still funded even after donating all that we have. It had earned enough interest on it’s own that we were able to donate everything without going under $100,000. Remarkable.
To you, Children’s Hospital, you allowed our daughter to pass with dignity surrounded by her entire family. I have been a squeaky wheel over the years, but you didn’t throw me out – you filled me up, you blessed our family. And it is going to impact others for years to come. I applaud your dedication to your patients and their families.
Warmly,
Rachel

 

Advertisements

5 Mistakes I Made After My Daughter Died

Mistakes

5 Mistakes I Made After My Daughter Died

Shared by Rachel Leslie

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.      

Mistake #1: My entire purpose became finding the purpose in her death.

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.

Mistake #2: I viewed her life as one cut short.

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.

And…

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?

Lord,

Grant to me the serenity to accept that which I cannot change;

Courage to change what I can,

and wisdom to know the difference.

Amen.

 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.

Mistake #3: I assumed other people grieve just like me.

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.

Mistake #4: I thought counseling would mean I failed.

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,

Mistake #5: I never expected it would still hurt.

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.

If there is one thing I did right in the five years since our daughter earned Heaven, it is this…

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.”    

 

 

When Wrong is Good

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? ACS_0479

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.

ACS_0478Let 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. ACS_0477

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.

Stay tuned…

Love + Hugs, Rachel

Are there Birthdays in Heaven?

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.

Weathering The Storm – Audio

(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.

IMG_4272

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.  

 

 

He Took Her Anyway

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.IMG_3194

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.

But.

What if…

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.

 

It’s Real.

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.

IMG_1654

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.

(Miss the original announcement? Click here to get caught up.)

IMG_1655

IMG_1616

IMG_1615