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!!!

View Full Album

The Golden Sky Blogfest

I received a comment recently from a bereaved mother and author of a book "The Golden Sky" a memoir written about the loss of her son Zeke.  Thank you for the invitiation to join your blogfest!

It has been such a long time since I last wrote anything on this blog.  My focus has been shifted to the Zoe Rose Memorial Foundation website, Facebook page, and Twitter account...not to mention raising Zoe's surviving sisters, Avery and Lily who will be five years old in just over a month!  I've also been fortunate enough to work with the Mississippi Perinatal Association in various ways and to connect with other parents like me who were changed forever by the premature birth of their baby and, in some cases, the death of that tiny beloved child.  Life has been busy and it has been full.  The Lord has truly revealed Himself to me in so many ways in the years since our triplets were born and Zoe died.  He has strategically placed people in my life at certain points along this journey we call life...these people have made significant impacts in my life as I have wrestled with, defeated, and often wallowed in my grief.  And each and every one of them were believers.  Believers who truly hold on to the fact that God DOES work all things for good, that without Him there is no purpose in suffering, that our trials and our traumas refine our faith, draw us nearer to Him (if we so choose), and reveal that no matter what we face in this life...this life is only temporary.  We are here for "only a little while"...that one day He will lift us up with His mighty hand.  That all the nonsense and craziness and unfairness of this life will one day make sense.  One day we will have no pain, no tears, no sadness.  One day, we'll be where Zoe is...with Him in Heaven.

I have recently become fascinated with the role faith plays in the the human reaction to tragedy and our survival of unspeakable challenges.  Weekly, my email box is full of stories from parents of premature babies, parents of children with special needs as a result of their prematurity, and parents who held a child and lost a child...no matter if they were only able to hold that child in their heart...most of these stories share three things:

1. The insatiable need we have to share our story, to tell people what happened to us and to our children.  I don't get the sense that these stories are shared with me so I will pity them...but rather they are so changed by their experiences, they have to tell others and they have a desire that builds deep inside to help others who experience something similar.  By telling their story they can assure another parent that they too have been there, have lived through it, and have survived it.  To tell them that there is always hope.

2. The strength, courage, and will-power to keep living amidst some of the most tragic and traumatic life experiences...these parents continue to fight for their children, fight for their families, and fight for their role as a parent...even if they have no living children.

3. Faith and belief in a God that will take care of them.  An assurance that He always has and always will provide for his children.

Before I became a Christian I wrestled with the common misnomer that if you believe in God and you believe God is good, then bad things shouldn't happen and yet bad things happen daily, all over the world.  I was astonished if I heard a Christian say that God has a plan and his plan is good...as they stood in front of the hurricane ravaged ruins of their home or as they sat vigil at the bedside of a loved one dying a slow and painful death.  Loss, pain, grief...how could this be good???  How could anyone still believe in God if THIS is what happens.

Now that I am a believer, I say thank you to God for my trials, for my suffering, for my grief...because the good that has come out of it has arms and legs and ripple effects that I do not even see with my human eyes.  Would I want to relive the extremely premature birth of my daughters, 9 1/2 months in the NICU, the near breakdown of my marriage, and the events of Saturday, February 16, 2008 when Zoe died...of course not!  But, I can say, with true conviction that I am eternally thankful for what I have learned as a result of these experiences.  I am truly thankful that I took the advice of a very wise Christian grief counselor who looked me square in the eyes and said "Keira, you have a choice to make and the choice is yours alone.  You can allow Zoe's death to make you bitter or you can let it make you better."  And she was right!  Had I continued along my path of digging my heals into the sticky and binding mud of my grief, I honestly don't know where I'd be.  I am even embarassed to say that I may not be living to sit and type this post tonight...it was that bad at some points.

I chose to turn the other way.  I leaned into God, not away from Him.  I looked to Him and to His Word for answers, for comfort, for assurance, for truth.  I searched for a security that could not come from anywhere else but him.  For a peace that surpasses all understanding...I know that peace now...I've felt it...it is real!  I have seen that peace in Zoe, throughout her short life and even just hours before her death.  She was in respiratory distress, and yet she looked at me through the bi-pap mask, squeezed my finger, and twirled a lock of my hair.  She was just a few short hours from death and yet here she was, lucid, aware, and calm.  Angels had to be surrounding her bed that night.  They had to be singing softly to her.  She was filled with that peace...that peace than can only come from the Lord.

I have experienced the hand of God in my life, I have felt his presence within my heart.  I have felt him fill that hole inside of me that aches for my daughter.  Though the hole may empty again from time to time, He never fails to fill me up again.  And I am so very, very thankful for it!

Before I had my girls, I thought I was a believer...but I only had head knowledge...I did not have heart knowledge.  Only after they were born 15 weeks early and survived and only after Zoe died at 14 months old did I truly find that heart knowledge.  It was Zoe's death and Avery & Lily's life that brought me to God.  Three babies...three beautiful, innocent little beings.  I believe that a child reflects God's love more purely than any adult...their love is so transparent...so adoring, so accepting & forgiving, so all-encompassing, and we crave that love from them, just like we crave His love.  We crave those smiles when they see us walk in a room or the squeals of delight when we first pick them up out of their cribs.  I've written before that children are not cloaked in life experience, they are not muddied by prejudices or preconceived notions...they are completely open to giving love and being loved.

Zoe exuded a calm and assured sense of grace and dare I say dignity (in a 1 year old!).  As I read through 1Peter in my Bible study this semester, I learned how important it is to quietly live out your life as a child of God because actions speak far louder than any words.  How we treat people is a reflection of God's love.  How we care for others is a reflection of God's love.  How we handle suffering and adversity is a reflection of God's love.  Our humility, our quiet grace, and willingness to serve others joyfully (however that may look in your life) is a reflection of God's love.  The absence of judging others is a reflection of God's love.  We are walking examples of God's love and how we act can draw people to Him or turn them on their heels and send them running off into the hills. 

Zoe had this love...this peace...this quiet grace.  And she had joy...an overabundance of joy despite the terribly rough beginning she had in life, despite the many challenges she faced in her development and yet to this very day...4 years since she was in the NICU...new nurses come on staff in that unit and they hear about Zoe.  They email me and tell me they feel as though they know her...that they have heard about how big her smile was, how warm her clear green eyes were.  That people in the hospital who weren't even taking care of her would stop by her room in hopes of receiving one of those gummy smiles or hearing her sqeaky laugh that shook her entire chubby body.  Zoe's life, though far shorter than I ever, ever, ever would have hoped...has impacted lives in far reaching places.  To meet me is to come to know Zoe and I hope to see God's faithfulness.  To see her photo and feel connected to this little girl who couldn't even talk and yet she would draw you in, pull you close, and grab hold of a part of your heart you will never get back...because she has it.  She has it with her, safely kept in Heaven until we see her one day and she can introduce us to the very God who made Heaven a reality, who made me a reality, and who saw fit to bless me with the priviledge of getting to know my daughter and to raise her surviving sisters.

Zoe...my love, my sweet Warrior Princess...I miss you every day.  Every day I wonder what life would be like if you were here.  Every day your sisters talk about you...sometimes even pretend to talk to you and tell us what you say to them.  I thank you for the assurance of your presence in our lives.  Eventhough I can no longer hold you in my arms or feel the silky softness of your dark brown hair, I know you are here.  I long for the day when I will watch you run towards me with your white dress billowing behind you, that smile I know so well spread across your face, and this time I will catch you and hold you to my heart and we'll twirl around and around and dance and laugh and sing together.  One day, Zoe...one day I'll be there too.

                                                                         Love, Mom

Zoe & mom, 8 months old

Zoe, two weeks before she died
14 months old

Lily, Avery, & Zoe 8 months old

Lily & Avery today...almost 5 years old!