MicKenzie's Story

By Janella Mader, MicKenzie’s Grandmother

Pure and perfect love and joy were not the first words to come to mind when we learned of our granddaughter’s “incompatible with life” diagnosis.  Her diagnosis was a sudden blow that hit us all hard.  For a time, we were somewhat paralyzed by fear and heartbreak.  Eventually, the sun came out again and we found ourselves anxiously awaiting the arrival of our beautiful granddaughter, just like we had her older sister and the granddaughters we have been blessed with since.  We have a beautiful story we would like to share with you.  A story filled with pure and perfect love, beauty and so much joy!

We found out on the Fourth of July, 2015, that we were going to have the great joy and honor of being grandparents again.  Our newest grandbaby was due to arrive in February.  A few short months later, we learned that our precious granddaughter would not stay with us here on earth for long before she would be in Heaven.  MicKenzie had been diagnosed with a “rare” condition that many deem as “incompatible with life.”  Yes, MicKenzie had anencephaly, but she was most definitely not incompatible with love and joy.

Our daughter, Christina and I, shared breakfast the morning of her routine ultrasound.  Christina and her husband were so excited to see their baby.  As the afternoon went on, I suddenly became aware of time passing.  Too much time was passing with no word from Christina or pictures of our granddaughter.  Finally!  A text!  All it said was, “Can you pick up Hailey (our oldest granddaughter) from the sitter?”  It seemed like forever before a phone call came in.  I remember my hands shaking, already knowing the news wasn’t going to be good.  At first, I wasn’t able to understand what I was hearing.  Sort of a screaming kind of cry was coming through the earpiece.  One sound at a time started to form words.  Suddenly, I was putting together what Christina was saying as she sputtered out between sobs, “She. Has. No. Brain.”  Tears ran down my face as I searched for understanding.  Silently, I heard my brain say, anencephaly.  Our granddaughter has anencephaly!  How I knew the term, I do not know.

Anencephaly is a birth defect in which a baby is born without parts of the brain and skull.  Life expectancy for babies with anencephaly is anywhere from natural death before birth, at birth or typically no longer than hours to days after birth.  I have heard of many babies who have experienced many joys in life for much longer than this.  Our daughter’s doctor advised termination.  Actually, it was the only option they were given by that doctor.  According to Life Site News, over 95% of parents whose child is diagnosed with anencephaly opt for abortions.  Our daughter and her husband chose life!  They chose to defend the life of their beautiful daughter! 

Our journey with MicKenzie was not always an easy one.  It was a journey filled with both joy and sorrow.  But, the journey was worth it!  MicKenzie was worth it all!  After Christina’s phone call, my husband and I went to meet them back at their apartment.  When we got there, our son-in-law, Michael, was staring blankly.  Christina was collapsed on the floor sobbing over greyscale images of their daughter.  I hugged them both.  Realizing how this nightmare must be true because Michael held on.  So, I held him longer and simply cried before turning back to our daughter still lying and staring at the images before her.  They had been told by her doctor that terminating would be the best option.  Her doctor was unwilling to even discuss other options with them.  Christina told people that she could not and would not allow the baby that was growing within her, the baby with her own beating heart, to be killed.  The baby that was kicking and reminding her how full of life she really truly was!  Christina found a new doctor who was willing to walk the bittersweet journey alongside us.  This new doctor treated Christina and MicKenzie with much needed respect.  The sun was beginning to shine again.  Christina was once again a mom who was expecting a beautiful baby.  MicKenzie was this very lively little girl he was going to help be born!  He wanted to know Christina’s thoughts, hope and fears as he was very interested in the family that they really, truly were.  Her doctor and staff supported Christina’s wishes and desire to give MicKenzie every single day that God had written in his book for her before he ever formed her.  Many of her appointments included an ultrasound to check for all kinds of things.  I loved these little glimpses of MicKenzie.  I marveled at seeing all her fingers and toes, MicKenzie sucking her little thumb.  I was definitely in love!  Christina began making plans for welcoming MicKenze even further into our hearts.  One day she called and said, “I want smiling family pictures when MicKenzie is born.”  She said this with great confidence and even some enthusiasm.  I was honest; I told her I would do my very best.  I wasn’t sure I could pull that one off!

The doctor that gave MicKenzie’s diagnosis was not the only person willing to throw her life away as though she was worthless and her life had no purpose or meaning.  We heard from other people who said things like, “They aren’t actually going to go through with it, are they?”  Even after MicKenzie was born someone asked, “Did they have to go through with it?”  I responded, “Have to?  No.  They chose to.”

We realized that we could mourn all of MicKenzie’s days, or celebrate the moments we knew we had with her.  We chose to celebrate!  That does not mean that the grief didn’t show its face at times.  The reality was, we all would have to say goodbye sooner rather than later.  That goodbye would hurt us all deeply simply because we all loved her deeply.  Each day was another day closer to saying goodbye, but it was also another day closer to saying hello!

MicKenzie’s big sister, Hailey, created handprint owls that we would add MicKenzie’s prints when she was born.  Hailey still proudly has it hanging in her bedroom.  Hailey was excited to see the little hands that would leave their prints next to hers.  Christina wanted to choose a little outfit for her daughter.  I was more than ready to do my grandmotherly duties and hunt down the perfect outfit!  Or several!  In the middle of admiring all the tiny little clothes, grief showed up.  Christina started crying, “I don’t want to pick just one special outfit.  Why can’t I plan for longer than a few moments with her?  I can’t do this!”  I had a daughter who all but collapsed on the floor before me in the middle of the store.  Somehow, our daughter managed to pick herself up and leave the store.  I later bought the sleeper she seemed to like the best.  It was a soft, little grey sleeper with tiny gold hearts.  It would later be the sleeper that she would be buried in.  It would be the last outfit I would see her wear.

MicKenzie’s birthday was getting closer.  We had been trying our best to prepare Hailey for meeting her little sister.  We were busy preparing all of us.  We knew that chances were more likely than not that MicKenzie would only have one birthday.  The day MicKenzie was born, Hailey helped pick out birthday balloons, put up the Happy Birthday sign we had made and hung banners around the room.  We displayed MicKenzie’s doll and her little booties.  We had hats and outfits all ready for MicKenzie.  We decorated cupcakes while we waited at the hospital.  Hailey wrote a note for MicKenzie.  It said, “I know she’ll be awesome!”  Hailey was spot on!  MicKenzie was awesome indeed.

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Most people have heard the quote, “Life is not measured by the breaths you take, it’s the moments that take your breath away.”  Well, it wasn’t long before MicKenzie was born and took our breath away, even though she never drew her first.  Everything about her was simply breathtakingly beautiful!

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We were able to greet our precious princess.  I was not accustomed to silence in the delivery room.  Shocking silence, deafening really.  Christina was crying.  She so wanted to spend at least a few moments with MicKenzie before she passed.  We all did.  MicKenzie was all wrapped in little blankets.  I started to peel back those blankets with Christina to truly study MicKenzie.  I pointed out her little crinkled ears, her long fingers and her hair!  We couldn’t believe the dark hair with little baby curls!  And her feet!  Her feet were as big as they looked on ultrasound.  You could see beautiful love pouring out as Michael tried with big, thick fingers to gently tie the strings of the hat under MicKenzie’s little chin. 

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The time had come for Hailey to come on in and say hello to her little sister.  She came walking in with her proud grandpa.  With shy, bashful and hesitant eyes, she peered over the bed rail.  She studied MicKenzie’s every feature.  And then her beautiful eyes went straight to her mom’s.  Hailey was the big sister who wanted to be so strong.  Yet she wanted to curl right up on that bed next to Christina. 

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My mind was suddenly running faster than I could keep up with.  Thoughts were just tumbling everywhere!  Why was I feeling like something had been taken from us?  Nothing had been taken!  We were in the presence of this beautiful baby!  Look at the wonderful gift we had been given to share.  Then, I got to hold her.  I marveled at how truly perfect every ounce of her was.  It felt wonderful to simply hold her.  My husband held her.  My husband and I are proud parents to eight children here on earth and three more in heaven.  You would think that a dad that has held so many babies would love to hold them all.  Believe it or not, my husband would rather chase toddlers than hold a baby.  I had never seen him look more comfortable with a baby in his arms.  He was certainly ready to meet our granddaughter.  Then, suddenly, I realized that I was indeed smiling!  I was smiling big, proud grandma smiles.  She was here.  She was loved.  I was so worried that I wouldn’t be able to grant Christina her wish for smiling faces.  And here I was, smiling.  I wasn’t even trying.  Every smile was natural and filled with the joy that MicKenzie brought into our lives.  Hailey proudly shared her birthday cupcakes with everyone she could find!  Turns out, this really was a celebration of life after all!  MicKenzie was bathed and weighted.  We finished Hailey’s owl painting by adding MicKenzie’s handprints.  We had a great time putting her handprints and footprints in her baby book.  We created handprints and footprints with clay.  We took lots of pictures!

Then, the moment came, one of the many moments that I will never forget.  It was time for me to say goodbye.  It felt as though time momentarily stood still.  Everyone else had left.  Christina was getting settled into bed.  Michael and Christina were spending a few quiet moments together.  I had to say goodbye.  I had to let her go.  Our daughter and son-in-law needed their time now to truly say hello.  Hello was filled with great love and joy.  Hello was filled with great experiences to hold on to for a lifetime.  Hello was so easy and natural.  Goodbye…was not.

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I will never forget the way it felt to hold her that last moment.  Her little butt was resting in my left hand.  I help her close to me with my right.  My chin was nuzzling her forehead.  Then I gave her a little kiss and gently placed her in the arms of her mother.  No more smiles.  Goodbye was here.  Her mom and dad needed her.  They needed to finish their much-awaited hello.  Their own goodbye would come much too soon. 

We assembled beautiful photo boards.  We had the tribute video we made playing.  Her picture had been framed.  We had a little guardian angel for the top of her casket.  The baptismal gown that Christina and Hailey had worn was ready to drape her tiny casket.  Hailey had another note ready for her sister.  It read, “I am sad.  I miss you.  I wish you were home.”

Father was ready to begin her funeral.  It was time.  We all took turns for our last moment with MicKenzie before the casket would be closed.  Father and Deacon planned a beautiful funeral service for her, for all of us.  They both spoke volumes about a little girl whose life was brief.  Brief, but filled with purpose.  Brief, but filled with love.  Her life was worth the painful goodbye.

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I would rather have taken this journey, than to have never had the chance to meet MicKenzie.  The journey was not always an easy one, but it was filled with beauty.  We are deeply grateful that Christina and Michael chose to carry MicKenzie all of her days.  We will be forever grateful that we were able to meet this wonderful child of God.  They chose to let her live the life God had created for her.  They chose life!  Choosing life gave us the amazing chance to hold, love and know MicKenzie.  We have been forever changed by the gift of MicKenzie’s brief life.  Christina has said many times that MicKenzie was worth everything!  Choosing life leaves no regrets.  Would you choose life and love and joy?