A Candid Look at Grief

I came to know Franchesca about a year ago.  Someone sent me a link to her online magazine specifically for parents who have experienced infertility, pregnancy or infant loss.  In a word, Fran is an inspiration with a quiet grace about her that emanates in her writing and her art.  She is the founder of Still Standing Magazine, artist at Small Bird Studios, book author, an advocate for parents who experience a pregnancy or infant loss, gifted photographer, mother to beautiful children on Earth and her baby Jenna Belle in Heaven, and just a lovely human being.

When we spoke on the phone last year she asked if I would write a guest post for the magazine about my own grief journey and how I've found hope in the years since Zoe died.  I of course said yes, but then got busy with other things.  And then I started reading the quality of the articles that were posted in the magazine and I got intimidated.  The writers, all mothers who have lost children, are extraordinarily talented.  Sometimes I feel like I'm reading poetry, the writing is that good.  So I thought to myself, whatever I write had to be fantastic!  So I procrastinated.

I went through a period of a few months that were challenging for me personally.  I was really wrestling with my depression, working with a new psychiatrist on my medications and new therapy.  October through February are generally hard months for me as they include Zoe's NICU discharge anniversary, the holidays and her death.  That's five months out of the year that are more difficult than the other seven.  Nearly half a year and I have moments where I feel like my head is barely above water.  I hate that.  I don't like feeling that way, I don't like when I think I'm doing well the anxiety and depression will creep up behind me and gather me up again.  I want to change, I want it to be different and I'm working hard to make some changes.  But surely I could NOT write about that for Still Standing!  That doesn't sound hopeful one bit.  And isn't that what every grieving mother is looking for?  Hope???

I finally sat and wrote my reality.  During the process I uncovered some interesting details about myself...my need to label myself, my need to be a beacon of light, my fear that someone will pull back the curtain one day and find the real me that often feels broken.  I sent my article off to Franchesca with an honest fear that it wouldn't be what she was looking for to share with her readers.  To my delight, I was wrong.  Fran immediately responded she would love to share it and thought it would resonate with many moms struggling in the same ways.

Thank you Fran for encouraging me to share the reality of grief, the reality that healing takes time, it takes work, and it has peaks and valleys along the way.

You can read my article here: Broken, but not Shattered

Advocacy & Awareness

I've been honored to contribute guest posts to two different sites this month for Pregnancy and Infant Loss Awareness.  Please read and share them:

Life After NICU - offering support to families through all stages of their NICU experience and well beyond discharge day.  They have a blog and very active Facebook page.

Loving October, Living my Purpose

I love October.  Of all the seasons, Autumn is my favorite.  I love the crisp, fresh air that greets me in the morning when I step outside.  I love to pull my sweaters off of the shelves in my closet.  I love wearing my boots and hearing the crunch of the orange and yellow leaves under my feet.  I love pumpkin patches, state fairs, and hot apple cider.  While Autumn is the time of year when nature begins to wither away, I feel energized by the perfect sunny days that get me back outside after the sticky heat of the deep south.

October holds fond memories for me when significant experiences have occurred.  In 1998 my husband and I married on one of those perfect cool Autumn days in North Carolina.  If I could have hand picked the weather for that day, I would have picked exactly what we got.  Fast-forward nine years to October 7, 2007 when I finally got that wheelchair ride out of the hospital with the last of my triplet daughters, Zoe Rose.  My girls were born 15 weeks early and while Zoe’s sisters, Avery and Lily, spent 120 days in the NICU, Zoe was a much different baby with a far more complicated NICU course that lasted 291 days. Read the complete post 

National Premature Infant Health Coalition - a collaborative of professional, clinical, community health, and family support organizations focused on improving the lives of premature infants and their families.  Visit their website and Facebook page.

Story from a Parent

I usually like to remain in control.  I like to plan ahead and I love having a schedule.  Nothing gives me more satisfaction than making a list and then taking my dark brown sharpie and marking through one of my tasks.  When half my list is done, it’s time to start a new list on a fresh, clean piece of paper.  Control.  Having a plan and a purpose.  It really is just an illusion though, false security.  Any parent of a preemie or parent who has lost a child will tell you that and yet we may find ourselves grasping desperately for something to give us that security back, that sense of purpose.  While we may have once seen our lives laid out before us, after the trauma of loss or an extremely early birth, the future turns from high definition to fuzzy and unfocused.  How do we get life back into focus?  How do we find ourselves in a place where we can once again feel secure and grounded? Read the complete post

Remembering Zoe

Today, we remember and celebrate the life of our Warrior Princess, Zoe Rose.  Four years have passed since that sunny Saturday morning we said goodbye to our daughter.  It is hard to believe I am at this stage.  I remember early on talking with moms who were 5, 8, or even 10 years along.  I would think to myself “That seems like an eternity.  I can’t possibly live long enough with this pain in my heart to be where they are.”  And yet…here I am.

In the past three years, on this day, and in the weeks leading up to it, I re-lived February 16th, 2008 – moment by moment, horrifying vision by horrifying vision.  I could smell the antiseptic soap at the sink, feel the heat of the lamps positioned over her bed, hear the beeps of the machines, the in and out breaths of the ventilator, and the quickly shuffling feet of nurses and doctors in and out and around our room.  In a futile attempt, I would desperately try to capture the memories of Zoe at home, before the sudden illness; to hear the sound of her voice when she laughed, feel the softness of her skin as I lotioned  her after a bath, and see the sparkle in her eyes when she smiled……

Four years have passed and much has changed.

I always rely on my memories to bring her back to life in my mind…that’s all I have left after all.  But in the previous 3 anniversaries of her death, I went straight to the most painful memories…even trying to imagine what the pain was like for others close to us when Zoe died.  What was it like when my dad and stepmom learned of her death?  They were driving from North Carolina after receiving word Zoe was in the PICU, thinking they were coming for yet another visit to help us out with Avery and Lily at home while we tended to Zoe in the hospital.  Or when our dear support coordinator from Northside  Hospital, where our girls were born, found out Zoe was dead.  She dropped what she was doing and sprinted across the street to the Children’s Hospital where we sat with Zoe, lifeless, in our arms.  What was it like for my sister-in-law to have to call her husband and my mother-in-law to let them know what she had just witnessed in the past few hours?  As if my own pain and grief weren’t enough, I wanted to try and re-live the pain of others.  All of this to remember my daughter.

I don’t want to do that this year.  I don’t want to recount the trauma of the day.  Not on this anniversary.  I have expended much energy digging in my heels, refusing to move forward, sitting squarely in my suffering…all in an effort to feel something…to bring the dull ache that lives below the surface to the forefront, so I can feel it to the length of my bones.  At the time I thought this was my way to make sure Zoe knew I loved her then and that I love her still.

Four years have passed and much has changed.

I am not suppressing my grief this year.  I’m not locking it away, refusing to face it.  This is not denial charading as a coping mechanism.  Believe me the visions and flashbacks, they are still my companions, though no longer my best friends – more passing acquaintances.  I’ve had my moments, the song on the radio that makes tears instantly well in my eyes, the sweet email or note from a bereaved mother or  friend acknowledging the challenge of these days, the tightened throat, the fatigue, the sleepless nights, those moments are all still here.  And I do allow the trauma scenes to flow through my mind.  I acknowledge them.  I may even sit with them for a while, but then I say “That’s enough.  No more for today…I’ll see you next time.”  I wipe my tears, wash my face, breathe in deeply and pray.  “Lord, you did not take me.  You took Zoe, but you did not take me.  Give me strength to live the life you’ve left for me.  There must be purpose in this pain and hope will grow from it.”

Four years have passed and much has changed.

Today, I find myself in a different place – physically, emotionally, and spiritually.  My memories of Zoe are rich in smiles and joy.  They are full of her squeaky laughs and sense of humor.   I feel now as though I have gotten through at least one valley, maybe even conquered a hill.  There will be more to come as the clock of time continues to tick.  But today, I know I’m not alone.  While my 1st instinct and desire may be to withdraw, pull the covers over my head and turn off the lights; I know there is purpose in my grief.

As I reflect on the good that has come our way since Zoe’s death I am humbled and overwhelmed.  Beginning with the great fortune we had in the caliber of healthcare professionals and therapists who cared for Zoe during her 14 months of life.  Some of these very special people were even with us in that room the morning she died, at that moment when the last machines was turned off.  Some of them are with us today as close as any family member.   The kindness and compassion is woven into the fabric of the hearts of these men and women who dedicate their lives to saving, caring for, and supporting fragile babies like Zoe.

Our friends and family who flew and drove hundreds of miles to be with us for Zoe’s funeral.  They swarmed to us, gathered us in their warm embraces, listened to us, cried with us, helped us to lay our baby girl to rest.  There was the flood of donations for the Zoe Rose Memorial Foundation, when it wasn’t much more than a thought or a dream in our minds.  People we didn’t know gave generously and people we knew who had little to spare gave without a 2nd thought.  This laid the foundation of what we are building today.  The Speech School in Atlanta, whose gifted teacher, Linda, helped us work with Zoe so she could understand sound; memorialized our baby with a plaque, portrait, statue and garden in her memory. 

Our friends,  volunteers, and board members who have helped us form the organization and made it possible to begin our mission to support other families like ours.   I simply could not begin to name and list the hundreds upon hundreds of people who have stood by our side, entered our lives, and continue to support us in a million different ways.

And there were and continue to be emails…countless emails, from parents of preemies, parents of multiples, parents of babies gone too soon.  These parents share their most personal stories with us, their most traumatic life events, and in many cases we come to know their family members and their friends, we now get emails about subsequent pregnancies, and subsequent losses.  We cry with them, smile with them.  We share in their grief and in their healing.  The connection of losing a child was made and the connection sustains.

I think that is what resonates so deeply with me now; that grief, loss, love, hope and prematurity transcend all human boundaries.  There is no discrimination of race, religion, marital status, age, social or economic standing, education, culture, male or female – these single threads are easily broken when taken on their own.  But we become bound together as a rope woven by our experiences and we can be strong, stronger than anything else.  In my life – God holds that rope and is the weaver of my life – bringing moms, dads, and children into my existence – making me stronger and by our intertwining, makes them stronger too, I hope.  These parents, they may not yet realize they’ve been added to this rope, but as they begin to feel as if they may fall apart, our threads are there to hold them, sustain them.

I’ve been fortunate to have opportunities to share our story at meetings, summits, and conferences across the country in the last few years.  For 45 minutes I tell the story of all three of our daughters, their birth, their struggles, and Zoe’s death.  Those in the audience sit in rapt silence, barely blinking, wiping the occasional tear.  Our story is tragic, yes.  Parents who have not experienced a loss like ours simply can not fathom that it really can happen and are equally stunned that we are still here, walking around, living life, and able to even talk about it.  The truth is, our story is not unique, not by a long shot.  And there are countless families who have endured and suffered tragedies I can not begin to fathom.  But we can not compare or categorize loss as worse than or better than, easier or more difficult than another.  Each family, each child, each life is different…and each is to be respected.

It still stings a little when  Avery and Lily are referred to as twins by those who don’t know our story and by some who do.  Comments like “at least you still have two”, “at least she died quickly”, or “at least she is whole in Heaven”…those used to cut me to the core, like digging a knife deep into my heart.  My anger would rise hotly from my belly, burn my heart, and close my ears to anything else that may come.  A self-protection mechanism to avoid pain on top of pain. 

Four years have passed and much has changed.

I know now that I can not fault people for saying such things.  It isn’t their fault they don’t know how this feels to a bereaved parent.  And I am thankful that they don’t know this kind of loss and trauma.  They don’t know how deeply those words hurt.  I would like to believe that most of them really did mean well and were trying to say something comforting.  But, if you haven’t had a loss like this, you simply can’t know that, more often than not, saying “I’m so sorry” is all you have to say.  In the past years, I’ve felt strongly about making sure everyone knew that Zoe died and I will still tell people, but I have also found that in some situations, I just don’t need to.  I go back to what my counselor said to me so long ago…that it isn’t up to me to leave Zoe’s legacy, God will take care of that.  I rest in my faith in His plan and the comfort of knowing that I don’t have to force Zoe’s story on anyone.  Her story lives on and He will use it as it should best be used.

So, I trust my instincts in those situations.  When we’re in the check out line and someone asks if Avery and Lily are twins I may just smile or I may say “No, they’re my surviving triplets.”  You see, I have also learned that trusting my instinct, listening to the quiet voice, is trusting God and more often than not the response I get is “I had twin brothers who died”, “I lost a daughter 18 years ago” or “My son was born 3 months early”  You never know the story behind the people you meet, and you never know when your own story, your own experiences, and your own baby who fought hard to live and ultimately lost the fight, just may offer the glimmer of hope someone else needs as desperately as you needed it yourself.

Four years have passed and much has changed.

And much has remained the same. 

I love Zoe with all my heart, just as much as I love Avery and Lily and just as much as I always will, that will never change.  I also know that I loved Zoe then, that sunny Saturday morning.  My love couldn’t save her to keep her here on Earth with us, but my love was and continues to be, so great, that I let her go.  I do have moments of wondering if I gave up on her too soon, that maybe we should have asked them to keep working on her.  But she had had enough.  We both knew it and two years ago, when I read the doctor’s notes from that morning, it was confirmed.  Her words plainly said: “Agreed with parents to discontinue resuscitation.  On full support, patient was actively dying.”  Actively dying.  That phrase, though short, speaks volumes.

We never gave up on her…we just had to give her up…let the angels carry her back to Our Father in Heaven, the ultimate healer (Exod 17:15-16) and comforter (Jer 8:18).  He was with us then (Matt 1:22-23), He is our strength now (Ps. 42:9), He has given me rest and peace (Judg 6:24) these last 4 years, and has always been faithful (Deut 7:9).

Zoe Rose, my warrior princess, my angel; your heart was full of love, your eyes seemed sprinkled with a thousand twinkling emerald stars, and your calm determination was the very embodiment of what Peter wrote in his letter: that true beauty “should be that of your inner self, the unfading beauty of the gentle and quiet spirit” (1Peter 3:4).  Unfading beauty…that’s what you are my sweet girl…an unfading beauty.  You live on in our daily lives, and in our hearts forever.  We love you more than our words could ever truly express.

Love,

Mom
P.S. Thank you for my ladybug whispers :)

“The Lord your God is in your midst, a mighty one who will save; he will rejoice over you with gladness; he will quiet you by his love, he will exult over you with loud singing.” Zeph 3:17

“He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” Rev 21:4

Some of our favorite Zoe moments:
Also, look below to view our all time favorite video of Zoe!!!

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