Happy Mother's Day

I Could Call You Beautiful

I could call you beautiful

because you are mine.

I could say you will change the world

because I have a mother's faith in you.

I could say you will be loved by everyone

because I love you,

But, today as I hold you in my arms

I can only say, dear baby

I am so happy you were born

Thank God!

by Marion Schoeberlein

The poem above was given to me by one of Zoe's primary nurses when Zoe was in the NICU; we were going on 3 months and Zoe was still sedated on the ventilator.  Life felt hopeless at times, I never dared ask about discharge because we were prepared to be there for a year, if not more.  It was a marathon physically, spiritually, and emotionally.  On a day to day basis I would flip-flop between feeling helpless as Zoe's progress seemed to move at a snail's pace and eager anticipation as Avery and Lily graduated to the step down nursery and were on their path to coming home.

Kangarooing Avery & Lily

Avery getting a bath

Bathing Avery and Lily was so exciting for me, being able to pick them up out of their cribs and hold them anytime I wanted almost made the NICU feel like my second home.  I brought real baby clothing in for them, blankets and little toys.  They even had a mobile above their crib and their very own CD player to filter soothing classical lullabies to their ears.  All of these things were so important to me because, while we were still in the hospital, I was at least able to do the things that "normal" mothers do for their babies.  For so long I had not felt like a mother, more like a bystander or a visitor; a common sentiment of NICU moms.

Daddy, Zoe, & Me

After doing Kangaroo care with Avery and Lily, I'd walk across the hospital to Zoe's quiet room in "The Garden" (the part of the NICU where the chronic babies go).  There she'd be, asleep, the rhythmic swoosh, click, swoosh, click of the ventilator breathing for her would fill my ears.  Zoe would shift slightly, grunt, clamp down on her ET tube and we'd hear a shrill "beep, beep, beep, beep" and the "ding, ding, ding, ding" of the various alarms measuring her heart rate, respirations, and pulse ox.

Me & Zoe

The room was grey, though I did have a big comfortable chair and when the proper number of nurses and respiratory therapists were assembled I would get myself situated just right, a boppy around my waist because as long as I held her I couldn't move.  I always feared she'd extubate while I was holding her so I would allow the muscles in my arms, neck, and back to tighten and twitch.  No amount of physical discomfort on my part could keep me from the treasured minutes of holding Zoe in my arms.

My first Mother's Day was spent in the NICU.  Avery and Lily had been discharged a few weeks prior and Zoe was making huge strides, moving to the newly built step down nursery on a high flow canula!  We still did not have a clue when we might bring Zoe home, but for a few hours that day I had all three babies in my arms.  Dressed them in precious onsies Richard purchased for them and I revelled in the fact that from this day forward Mother's Day would be a day I was allowed to celebrate!

My first Mother's Day

During our NICU stay, days stretched into weeks, and weeks ultimately into 9 1/2 long months and the definition of mother changed into something far greater than what the dictionary defines as "a female parent".  I prefer to think of NICU and bereaved moms as the other definition of mother: "something that is extreme or ultimate of its kind" (used in expressions like "the mother of all ships", allow me the liberty to manipulate the meaning just a tad).  

As preemie moms and mothers who have lost a child, we have to dig deep within our souls to uncover the strength that lies within.  Many have described motherhood as a primal instinct we often see played out in nature by a lioness' fierce protection of her offspring.  NICU moms and bereaved moms are quite the same.  We would take every wire and tube, procedure, medication, and surgery upon ourselves if we could so our babies wouldn't have to endure such things.  We would do more than change a diaper on our 1 pound babies if we could, and we would do anything, literally anything possible to protect, love, and nurture our babies.

Me & Zoe

And as a mother who has lost a baby, who has watched life slip away, and held the shell of my once warm daughter with sparkly green eyes; we would give up anything to have that baby's life back.  To have one more day, sing one more song, or have just one more snuggle to fill the void in our empty arms.

I promise you, NICU moms, no matter where you are along this life journey, even when you feel your weakest, you are far stronger than you may believe.  This seed of strength was planted the moment you knew there was going to be a complication.  You may not feel it yet, but over time it will grow and you will find yourself as that fierce lioness protecting and advocating for your child with grace and determination.  

And to the many moms whose arms may be empty this year, know that you are and always will be a mother.  You became a mom from the minute you dreamed of having a baby and when your worst nightmare was realized, and you had to let our baby go, your seed of strength was planted too.  Step by step, at your own pace, you will find a moment when you won't have to force yourself to smile, when moving your feet from your bed to the bedroom floor won't take quite so much effort.  You are stronger than you feel and for both NICU and bereaved mothers there is a vastly growing network of parents who have been where you are and want desperately to offer you just one small ray of light, one small piece of hope.

Lily, Me, Avery, Zoe (8 mos old, still in NICU)

I am in awe of all the moms I've met along my NICU and grief journey who have found a way to channel their experiences into something that helps even one other mom find that sense of hope we all crave.  Happy Mother's Day to the many, many moms I count as dear friends who offered me that hope, always at just the right time, exactly when I needed it.  I love all three of my daughters, and my two other angels in Heaven, with every ounce of my heart and soul and feel so incredibly privileged to be given the chance to be their mother.

Birdie & Lily

Namo with Lily & Avery

And Happy Mother's Day to those who have been like mothers in their own ways to me - my wonderful stepmom and my mother-in-law, both of whom love their granddaughters in an immeasurable way and did everything they could, when they could, to help us through some of my darker days.

Zoe with Mimi

To my own mother, I am usually great with words, but I find myself unable to properly express my gratitude for all that you've done.  You stood by my side, even when I locked everyone out, and you never left.  In your own graceful, quiet, and loving ways you held me up and even offered a mother's care to my babies when I was too grief-stricken to do it myself.  Quite simply, and very deeply, I love you! 

HAPPY MOTHER'S DAY!!!

Much love, peace, and hope to all of you!

Mommy with Avery & Lily

Small miracles

Before I had my girls and definitely before we lost Zoe, I might have commented on a coincidence - talking to my mom about my sister and then my phone rings, and its Naomi. Things like that. I wouldn't dwell on them and I certainly didn't look for coincidences. Since Zoe died, that has all changed.
I've opened up my heart and my mind to receive whatever gifts God sends my way - whether that's the ladybug Lily found on her bed this Easter, or the seemingly distant connection made recently between myself and an organization in Athens, GA called Lukas' Fund.  Or meeting Maureen, founder of MOST, thinking she was simply the leader of a helpful organization - only to see 5 years down the road that because of the connections she made for me, I am able to do much of the preemie support work I do now.  And of course, the many people placed in my path throughout my girls' NICU stay that became much more than a nurse, a respiratory therapist, or a long lost friend from high school.  Connections are made, people are brought together, ideas, thoughts, experiences are shared and in so many cases the meaning for it stretches well beyond the moment itself.

If you've read my blog you know all about my "ladybug whispers".  These ladybug whispers I can no longer claim complete ownership of because so many other people I know will see a ladybug and consider it their own little gift from Zoe.  And more often than not, these ladybugs show up for people at just the right time when they need reassurance, hope, or just a smile.  I will admit to being a little bit jealous if someone saw a ladybug, but I didn't.  Those are my ladybugs after all!  My feelings on this have of course changed and I am thankful for every ladybug Zoe sends down to Earth to offer just what someone needs at that particular moment in their lives.  I have this image of her sitting on a white puffy cloud, long curly dark hair flowing around her shoulders, with her magical bucket of ladybugs set next to her.  I picture her looking down on all of us from her Heavenly perch, just smiling and giggling as she sprinkles those little red bugs down around her.  Each one knowing exactly where to go and when.

I love my ladybugs...and while I didn't exactly get my own ladybug whisper on her angel day this year, there were other things that happened that filled that space.  Each year I struggle with how best to honor Zoe's life on her angelversary, or on their birthday or any other significant holiday.  I want to be sure we include her in a natural way, that remembering Zoe is never something Avery and Lily will dread or resent.  I always have a strong desire to be somewhere beautiful and peaceful, to have a chance to take in the beauty of the world God created for us as a reminder that Heaven is even better.  Maybe this is my way of self-soothing, to feel close to God and by default, close to Zoe.

This year we decided that from now on we would spend Zoe's angel day with just the four of us and we wanted to be somewhere special for the girls.  When I think of peaceful and relaxing I see myself cuddled in a warm blanket in a rocking chair on the porch of a cabin in the woods, enjoying a steamy, hot mug of coffee, listening to the birds in the trees.  But what are two five year olds supposed to do when its winter and they can't play outside?  So, living in the South, we opted for the beach which is equally tranquil and relaxing in my mind and even in the winter, the Gulf is gorgeous, with weather that is usually quite mild.

Avery and Lily had not been to the beach since they were 18 months old and do not have any memories of that trip of course, so they were very excited about going.  They knew the water would be too cold to swim in but they didn't care.  All they wanted was to build a big sand castle in the world's largest sandbox.  And that is exactly what we did.

The weather forecast was grim, calling for cool windy days and lots of rain.  God, in his infinite wisdom and mercy, gave us a 2 1/2 hour slice of sunshine and 70 degree temperatures on February 16, 2012.  Richard and I were both so full of joy on this day.  We couldn't help it because Avery and Lily had never looked or sounded so happy in their 5 years.  Their entire bodies were charged with excitement as we strolled down the boardwalk, each armed with a brightly colored plastic basket full of shovels, buckets, and other sand toys.  For the last 3 1/2 years Avery had heard all about how, as a toddler, she hated the feel of the sand on her feet.  So much so that when we tried to set her down she would hike her feet up to her ears!  We got to the edge of the boardwalk to remove our flip-flops and she looked tentatively at the soft white sand.  Carefully, she placed each jelly shoe in her basket, stepped slowly on to the sand and in a flash looked up at me, eyes gleaming and exclaimed "Mommy!  I like the sand on my feet now!  I like it!"  I think she was relieved to learn this about herself and off she ran to catch Lily, who did exactly what she did as a toddler and headed straight for the water without hesitation.  I truly think that had we let Lily wear a bathing suit she would have had her own polar bear swim!

The girls spent the next few hours running and screaming, laughing and chasing each other.  The wind carrying the sweet melody of Lily's giggles to our ears.  They dug in the sand, buried their feet and even stood at the edge of the waves, letting the icy water lap against their ankles.  Never before had I witnessed such utterly pure joy in another person.  There was nothing left for Richard and I to do than hug each other tightly and marvel at our girls, soaking in every ounce of this beautiful, most perfect day with them.

I knew we were enveloped in prayer on this day.  My small group at Bible study, among countless others, sent warm sentiments to us and prayed without ceasing for all four of us.  For the first time, I didn't have to force myself to remember the good parts of Zoe's life, and I was so thankful that I have these moments to remember.  Far too many parents never get a chance to get to know their babies, but for whatever reason, we did.  I didn't have to force myself to smile and laugh, it came so naturally, and honestly, was unavoidable.  The comfort and peace of the Lord washed over me.   I didn't sit in a fog all day, feeling anxious about whether or not I was "acting right" for a grieving mom on the anniversary of her baby's death.  I know I'm still grieving.  Of course I'm still sad, but on this anniversary of the worst day of my life, I remembered with joy and love in my heart and I always keep my ears open for my ladybug whispers.

While I didn't have my own ladybug experience this year, I was happy to hear from a number of friends and family members who had their own ladybug encounters on or near Zoe's angel day.  Some of the stories are quite wonderful and never cease to amaze me that whether or not you believe God or Zoe sends a ladybug down to Earth, the fact remains that when people have heard Zoe's story, seen a picture of her brilliant smile, and know the background of the ladybug symbol, when they see one they smile.  Friends and family who never had a chance to meet Zoe, even preemie parents and bereaved parents across the country I have yet to meet, smile when they see a ladybug and see it as a special visit from Zoe.  How amazing that something so small can have such a far reaching impact.

My ladybug whispers and those of others aren't always in the form of a ladybug.  Sometimes it's Zoe's name.  Like the friend of a friend, named Zoe, who had a premature daughter on Zoe's angel day.  Or when I first finished writing the draft of this post at the library I breezed past their "staff picks" shelf, which I rarely look at, and a book jumped out at me among the 50 or so that were there.  It was titled "Baby names from Aaron to Zoe."

This year though, there was one in particular that sent chills up and down my arms.  Zoe blessed her Aunt No-No, my sister Naomi - named Aunt No-No by the girls when they first started talking and it will probably be her name for as long as they are around.  She lives clear across the country in Oregon and lives a life full of outdoor adventures.  The Saturday following Zoe's angel day, Naomi and her boyfriend Garrett went horseback riding on the beach.  Garrett is a writer for an Oregon paper and gets to enjoy all kinds of activities at no charge to write stories about his experiences.  Kind of like free advertising for the company.  Being the kind soul that he is, he brings my sister along and you will often find a photo of her among his printed stories.

Naomi said the day was perfect.  Now, Oregon is not known for perfect winter weather, usually being grey, rainy, and bone-chilling cold.  But on this day it was cool with a slight breeze and a bright sun to warm their backs as they rode.  The arrived at the beach to meet their guide and their horses only to find out that their guide's name was Zoe.  She was a young woman, full of warmth and kindness.  Naomi said she instantly reminded her of our Zoe's sweet and loving spirit and felt blessed to have this reminder of her niece.

I can only imagine the thrill of this particular adventure - galloping along the sandy beach, with the crash of the waves thundering in your ears, the sweet salt taste of the air, and your hair flowing behind you in the wind.  Magical, I'm sure!  Who wouldn't love to spend a Saturday afternoon like that?

After the ride was over, Naomi and Garrett walked hand in hand along the water's edge, smiling from ear to ear, sharing the excitement of the afternoon, feeling close to nature and to one and other.  It hadn't been long when they both stopped suddenly, jaws dropped, eyes wide open.  There, right before them, written in the sand was the name "Zoe."

Had the guide written it?  They don't think so because they had been with her the whole time and she wasn't anywhere in sight.  Did Garrett write it to surprise Naomi and commemorate a special day for her niece?  No, he had been at Naomi's side all day.  Who could have written it?  We will never know.

I'm sure there is a perfectly good, human explanation, hover, I prefer to believe it was written by the hand of God.  Maybe he didn't stretch his pointer finger down from Heaven and trail it along the sand, but I do believe God has a plan and even the smallest things work together in ways we cannot begin to imagine or comprehend.  Someone wrote "Zoe" in the sand without knowing the significance of the name for my sister and it happened to be on a beach in Oregon my sister had never been to, on the one day she would be there along the path of her carefree walk with her boyfriend.

Naomi was beyond stunned, as was I when she emailed me the photo.  I thought for sure she had written it and sent it to me as a loving gesture.  My heart skipped a few beats once I realized she had no idea who wrote it.  Some people don't believe in miracles or when they think of miracles it involves someone at death's door returning to full health or a child surviving a horrific car crash without a scrape.  Of course those are miracles in my book, but I believe, and have had many experiences since Zoe's death, of the small miracles God leaves in our path to remind us He is here.  I've written about it many times and I know it to be quite true, as our pastor once said "We don't have to wait for the big miracles to find God, it is in the things we consider insignificant at face value, the small things when we truly see the face of God, feel His love, and experience his presence."

My sister was blessed on that perfect Saturday afternoon.  She said she felt Zoe's spirit with her in such a profound way that she ahd not yet felt up until that day.  Cynics and non-believers may refute what I think happened, and that's fine, they are free to do so.  But I choose to hold on to this moment as special, noteworthy, and without logical explanation.  For me it was a Heavenly message meant just for Naomi and a reminder for me from the Lord that he loves each and every one of us so much that he will write a significant name in the sand, for just the right person, on just the right day, at just the right time.  Now who could deny a mother, who has lost her child and all physical bonds with that baby, this intangible sense of comfort she finds in the smallest of moments?

A sister's love

This is a post I started around Christmas and just now finished...I'm posting it now especially for a friend missing her babies.                

We’ve entered a new developmental stage with Avery and Lily…a new stage of grief that had not been present up to this point.  I knew it would come and I assume that it will come again and again as they get older, as their beliefs solidify in their hearts, and their understanding of the world around them continues to shape and form.  The question stopped me in the middle of the kitchen.  I was busily preparing dinner for our family and my dad and stepmom, who were visiting from North Carolina for the holidays.  I popped in an educational DVD I contributed to for families about to leave the NICU.  It is full of the important topics like breastfeeding and nutrition, immunizations and follow up appointments.             

               In the course of the program I share our personal journey with prematurity and coming home with three medically fragile babies.  I tell the whole story, their early birth, extended NICU stay, and Zoe’s death.  I wanted the girls to see it because a lot of their photographs were used throughout the video and even some footage of them this summer, running and laughing in the backyard.

                As the video came to an end I walked to the kitchen to begin setting thetable.  Within moments I felt Lily at my side, holding on tightly to my thigh; she looked up at me with her big blue eyes and long brown eyelashes that seem to go on for miles.  Her sweet, small voice asked “Mommy, why did you say in that video, Zoe died?”

                Wham!  It hit me, like a dodgeball aimed right at mygut.  We never used the words death, dying, dead, die, or died with them when talking about Zoe.  We have always simply told them Zoe was in Heaven with Jesus, a phrase they’ve come to adopt as their own at times.  All the books and articles I have read on child grief have said to tell them the truth. Do not sugar coat it, do not make it seem scary, do not tell them the person who died went on a long trip or went to sleep.  Do not tell them only old people die, do not tell them they are up in the clouds. Tell them the truth.  Teach them the difference between being sick with a cold and having a terminal illness.

                I had only seconds to figure out what I was to say and in those few seconds I took a deep breath, and said a quick prayer with my exhale.  I quite simply asked the Lord for wisdom.  I fumbled over my words, I don’t know if I said the right things…but I told her the truth.

                I got down on my knees, right at her eye level, my hands clasped gently around her waist and said “Sweetie, I said that because Zoe did die.  She died and now she’s in Heaven.”

                “But Mommy, why did she die?”

                “Zoe got very, very, very sick.  A different kind of sick than we get.  And now she’s in Heaven.”

                I sat down on the floor in the middle of the kitchen and pulled Lily tenderly onto my lap.  She buried her head in my shoulder, clung tightly to my sleeve and cried. For the first time she cried about her sister, Zoe.  Her soft whimpers coming from that deep place inside that my own cries come from.  Sadness washed over her and the blanket of innocence that protects our children from the adult issues of the world became a little bit worn, a thread-bare spot was created as a filter of light shone on her understanding of life and death.

                A few minutes passed in silence, I stroked her hair, held her tightly to my chest and repeated “I love you so much Lily. And Zoe loves you too.  We all love you.  Its ok to be sad, its ok to cry, its ok to miss your sister.  I miss her too and sometimes I’m sad and I cry too. We all love Zoe and we all love you.”

                Slowly she turned her face up to me, her creamy skin now splotchy from crying, her crystal clear blue eyes, now red-rimmed with grief and said “I miss my sissy.  I want Zoe to come back.  When can I go to Heaven Mommy?  I want to play with my sister.”

                With each statement, each question my heart cracked a little more…nevermind my own grief of missing Zoe, especially at this time of year just weeks before their birthday and Christmas, now my heart was breaking for my living daughters.   Seeing grief overtake my little four year old daughter, I thought to myself “little girls should not have to even think about things like this.  Why does she have to feel this pain too?  I know this pain and it is a deep-seeded pain that stays inside of you.  Lord please help me.  Please help my daughter.  Don’t let me ruin this moment, help me use it to draw us nearer to you and nearer to eachother.”

                Avery stood by, looking on, a little perplexed, not quite sure why Lily wasc rying.  She lovingly stroked Lily’s hair and held her hand.  This moment was awful and yet wonderful at the same time.  To be witness to these raw emotions within my girls, the sensitivity and tremendous love they have for one another was astounding. 

                I kept breathing, slowly.  In…..and out…..in…..and out…..in…..and out.  I heard God’s whispers in my ear: “Take your time Keira, don’t rush them, don’tworry about dinner, this is more important. Be present.  Be available.  Honor their feelings, validate their grief, don’t try to fix it.  Do everything for them that you wanted done for yourself when your grief was at it highest.  Love her. Nothing more is needed, just love her.”

                Time passed with a few more questions that I didn’t have answers for.  I wished so deeply I could tell her when we were going to go to Heaven and I wish I could tell her if Zoe was a baby or a big girl, if she had a white bed like Lily and Avery, and if she liked todance.  My new counselor recently suggested I let the girls make their own memory boxes for Zoe.  Something that can be just theirs to keep in a special place.  So I brought this up and promised them we would go through Zoe’s boxes and they could pull out one or two of her toys or blankets to sleep with. Lily’s eyes brightened.  A tiny smile even found it’s way to her lips. She knows these boxes quite well, they sit high up on a shelf in my closet and only once or twice have I brought them down.

                We hugged some more and Lily took me by the hand to the shelves in our living room, she pointed to a photograph of the three of them when they were barely one year old.  It was the photo I used for our holiday card in 2007, the only Christmas we had all three at home together.  It was the card that served as my birth announcement because I had refused to send an announcement out when they were born as I wasn’t sure they were all going to survive their NICU stay.  Imagine that, I waited to make sure I knew, and yet I really didn’t know.

                Lily wanted the photograph to sit next to her at the dinner table.  When we all sat down to eat and held hands to say the blessing, Lily made Richard and I place a finger on Zoe’s picture to include her in the circle of prayer.  She seemed satisfied with my answers to her questions, appeared to like my ideas of finding special Zoe things just for her to keep, and so I think I walked over this hill with her in a positive light. It was only the beginning.  The next several days held more moments like this. Moments where Zoe was “present” with us…having a pizza picnic in the playroom she needed her own plate and napkin. Lily and Avery took turns holding her and often passed Zoe to me to hold and hug. 

                On the day of their school Christmas program, I brought a special birthday snack for their class; pink and purple flower cookies along with a dozen ladybug cookies.  All of their classmates hungrily gobbled up the cookies after singing happy birthday to Avery and Lily, while my girls sat quietly and slowly ate theirs.  Savoring every drop of sugar that came in contact with their lips!  All of the little girls and boys were off playing while my two sat silently with empty plates before them.  They whispered something to eachother, that secret bond of sisterhood and being multiples ever-present before my eyes; and then Lily looked at me and said “Mommy, we didn’t sing happy birthday to Zoe.  Tell Ms. Winnie Annison, we need to sing to Zoe.  Zoe is here and she wants us to sing to her too.”

                I obliged with the sting of tears behind my eyes and that familiar tightened throat.  Her teacher joined us and we sang to Zoe.  On my way out of the school I stopped by the office and offered cookies to the staff.  Heather, the director is one of the kindest women I know, with a heart so full of compassion and love for the Lord; she reminds me of Lily in some ways and Lily adores her.  She took a ladybug cookie, knowing the significance of that red little bug for our family, and said “I’m sure today was hard.  Good, but hard too.  I was thinking about you the whole time.”  What she doesn’t know is how much that helped me, to acknowledge the bittersweet moments of experiencing Avery and Lily’s“firsts” without their sister, not being afraid of my tears, and offering a hug at just the right moment.  Heather blessed me that day with words and an embrace that I know came straight from God.

Avery, Zoe, and Lily

November 2007

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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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!