by Cheryl McCormack

“I wanna give her the world
I wanna hold her hand
I wanna be her mom for as long as I can
and I wanna live every moment until that day comes
I wanna show her what it means to be loved”

It was difficult to hold back the stinging tears in my eyes as Mark Schultz belted out the lyrics to his song, “What It Means to be Loved,” at the Belle Mehus Auditorium, one evening in late October…just days after my newborn niece, Grace Mary Axt, was laid to rest in a tiny casket; carried protectively by my grieving brother’s strong arms.

Baby “Gracie” was born with a neural tube defect, known as anencephaly, in which the fetus has very minimal development of their brain. The skull and skin that protects the brain does not form, leaving the remaining brain tissue exposed. A baby born with anencephaly has zero chance of long-term survival and most are lucky to live through labor and delivery. The defect is present within the first month of pregnancy, when the neural tube neglects to fold and close between the third and fourth week of development. My brother, Jeff, and his wife, Missy, learned of their baby’s condition just as they were headed into their third month of pregnancy.

After hearing the doctor’s prognosis for Grace, the couple was given two options-terminate the pregnancy or try to carry her to term, God willing. Jeff and Missy were going to have to make the most important decision of their lives, thus far. However, it didn’t take them long to come to a mutual consensus. They chose life for their baby, knowing the final outcome would be devastating. They wanted a chance to meet their child and love on her as much as they possibly could. They longed for memories of their first-born child to carry with them on the long journey that lie before them. Grace was growing and living off of her mother in utero. Her little hands and feet were being molded by the hands of God. How could they possibly end the beautiful life that was being created within Missy’s womb?!? They decided to leave Grace’s future in God’s hands, knowing full well that their baby would be lucky to survive labor; let alone minutes, hours, or days following her birth.

What Jeff and Missy had to do next is unimaginable! They had to tell their family and friends the devastating news. Not only were they going to lose their baby, a granddaughter, niece, cousin, and special friend would be lost to all of those that knew and loved the Axts. I still remember the heartbreak, disbelief, and denial. There were many days of questioning how God could create an innocent baby, so perfect and sweet, without the most functional organ in the human body. And why Jeff and Missy? They had desired a child for well over a year and were elated when they found out they were pregnant. Grace was loved and needed from that very moment.

Unfortunately, we can’t stop the hands of time. Between appointments and the work on their farm, the two of them kept rather busy. The summer months brought many distractions-planting, haying, spraying and harvest, which were a godsend. Missy spent her days at the McClusky Clinic as a devoted and loving nurse. Before long, she began to feel all the normal pregnancy symptoms-the first kick, bouts of hiccups, somersaults, being nudged in the ribs (many times!), and the 20 week ultrasound. They were having a girl! With each changing season, Gracie grew and became more and more active. The pregnancy was as normal as could be. Jeff and Missy had to pinch themselves to remind them of what lie ahead.

The closer they came to their October 8 due date, the more pressing it became to start planning. Not the nursery theme or a closet full of cute, little sleepers; rather, funeral arrangements. Planning a birth and a funeral all at once. Jeff and Missy discovered an organization ran by monks, called The Trappist Monk Casket Company, that donates or gives caskets at a reduced cost to families that have lost an infant. After ordering a casket from them, they made their way to the local cemetery to pick out a plot. As they were walking around the cemetery, little Gracie was kicking up a storm in her mama’s womb, making the moment that much more surreal.

October had finally arrived and with it came bittersweet feelings and emotions. Jeff and Missy were excited to meet Grace, but at the same time not ready to say goodbye. They scheduled their induction date for October 19, as most anencephalic babies do not go into labor on their own. And then they waited.

Grace Mary Axt was born October 20, 2011 at 8:35am, via cesarean section, after a long and unsuccessful attempt at an induced labor. She weighed in at 6 lbs, 9oz and was 19” long. She had soft, dark hair at the nape of her neck. She had her daddy’s long fingers and strong hands. Her mouth, chin, and the little toes on her feet were just like her father’s. And from her mommy, she inherited her tiny ears, nose, and the most beautiful eyes! Missy said it best when she said, “Looking into her eyes was like looking directly into the eyes of God.” She had the best features of both of her parents and she truly was beautiful! Gracie took everyone by surprise, as she was able to do many things that most anencephalic babies aren’t typically able to do-yawn, coo, drink from a bottle, and even wet a diaper! After being baptized and confirmed, she was able to meet both sets of grandparents, numerous aunts and uncles, and many special friends.

Throughout Grace’s day, there were instances when they’d thought they’d lost her. She had a couple of apnea episodes, where her breathing became irregular. After some skin-to-skin contact with her parents, she came to again. During the second scare, Jeff whispered to his little girl, “Just give me two more hours, Gracie. I’m not ready yet.” And that’s exactly what she did. She passed away, peacefully, two hours later and was pronounced dead at 11:39pm. She went from the arms of her parents’ directly into Jesus’ loving embrace. Missy and Jeff had guarded and protected Grace for nine months. Now it was Grace’s turn to protect her mommy and daddy with her beautiful, angel wings.

Her funeral was held days later. She looked like a precious, little dolly all swaddled up in her pink, John Deere blanket. Her daddy had picked out a toy John Deere tractor to rest in the grave with her. He bought a matching one to keep for himself. Across her chest lay a butterfly rosary. Butterflies became Gracie’s little sign-the sign of resurrection. At the cemetery, Jeff carried his little girl in that tiny casket to the spot she’d be laid to rest, near an evergreen tree. He needed to hold her just one last time! Family and friends gathered together and mourned the loss of one very special, baby girl.

Grace was surrounded by those that loved her every minute of her life. All she knew was love! She was born and died on the same day. However, in her short fifteen hours of life, she touched more lives than some people do in an entire lifetime! That little bundle of joy had developed quite a fan club, via a caring bridge website that Missy had created. She used the site to channel all of her emotions and easily keep everyone up-to-date. Lots of prayers have been and still continue to be lifted up to heaven for the Axt family.

As a mother of a sweet and vibrant two-year-old girl, I am truly inspired by my sister-in-law, Missy. She went through an entire pregnancy, watching her belly grow and move with the passing months, knowing that in the end she’d have to say goodbye. There was no guarantee that she’d even have the opportunity to meet and love on Grace before that goodbye. What a selfless thing to do! She has weathered the storm with so much strength and courage, making sure that Grace’s life would not be in vain. Missy’s love for her daughter is so very genuine and unconditional. Simply stated, Missy is an amazing mom!

After leaving the Mark Schultz concert that evening, I felt so fortunate to have met my niece, Grace. And even though Jeff and Missy only got to “hold her hand” for a short while, I am certain that Grace definitely knew “what it meant to be loved.”
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Missy and Jeff are still coping with the loss of their daughter; there is not a day that passes that they don’t long for their baby girl! Missy has turned to blogging and public speaking to help her cope with Gracie’s death and to educate others about infant loss. Her blog can be found here: graceful-butterfly.blogspot.com

Since this article was written, Missy has started a project in honor of Grace, called “Everlasting Grace.” Handmade blankets, hats, and booties will be donated to the St. Alexius NICU, where Gracie was well cared for during her 15 hours of life. Each blanket will have a copy of Grace’s story attached to it. “Everlasting Grace” is a way to help support families that are often times dealing with unexpected circumstances; every newborn baby will have a “blankie” to snuggle with and hat to keep them warm while in the NICU. This will be an on-going project, as Missy plans on replenishing St. Alexius’ stock every so many months. Anyone interested in contributing to this project through their skills or monetary donations may contact Missy via email at hilzende@hotmail.com or by phone at 701-363-2451.