Completion (GoFundMe Update3)

Phew, I just turned in my final literature review and the last assignment in my Neuroscience Advanced Writing class! I am done with another class! Pre-paper, my grade is 99% so I'm feeling pretty hopeful for an A in the class.

Since I'm closing the book, so to speak, on this class, I put all of the studies I read for the final paper into a binder. This doesn't include the online textbook reading I also did. Even though I wouldn't put this class up there with Biology and Chemistry in terms of difficulty, it was a challenge to read and interpret the data I chose to write about. I am just as relieved to see this class come to a close as I was excited about it beginning.

I hoped that studying neural tube defects after Abigail died from one would be therapeutic, and it definitely has been. It's also been extremely emotional at times, as all therapeutic treatments are. I had a mini health crisis in the middle of the term, but fortunately it wasn't on a day we had class. Doing it all online, thanks to Covid-19, actually saved me from having to travel by myself thirty-five minutes each way after a fainting episode of unknown cause. I don't know if Fall semester will be online, too, but I'm grateful at least that this term and next term are online.

I was also added yesterday to a Facebook support group for survivors of AFE (amniotic fluid embolism). The first thing I did was look up "vasovagal syncope" to see if it was something commonly experienced by AFE survivors. I was actually relieved when I found that others had similar experiences. I have a lot to process now because I've been warned that Sheehan's Syndrome is common after AFE. I already knew from my own scary experience losing consciousness that I would need to be aware of my nutrient levels, particularly electrolytes. This was a heads up that hormone levels may also be an issue. I am hoping vitamins will help my body to start regulating its own hormones so I won't need to supplement with synthetic hormones.

Who knew this experience would make me an expert in so many little known diseases? 😊

Our GoFundMe campaign to cover our medical expenses has been going so well, thanks to the generosity of so many new and old friends, family, and even a few friends of friends. Your kindness and gifts have blessed us in two ways: 1) the financial relief which cannot be overstated! and 2) the emotional relief to see such love expressed. We know we are not alone in this, the most difficult experience of our lives. Thank you!

We stand at $3,614 raised with GoFundMe and $129 donated outside.

That means we still need $1,329 to reach our goal and pay all the medical bills. Please consider sharing this fundraiser link:

https://gf.me/u/x7ftk4

I'll close by sharing a few pictures of the flowers blooming in Abigail's memorial garden in our front yard right now.

yellow snapdragon

pink and white begonias

purple violas

a budding white shasta daisy

Almost Touching (GoFundMe Update2)

Woot! We just cleared $3,000! THANK YOU! We are now 3/5 of the way to our goal of $5,072. That's math I like to do!

Keep sharing, my friends! We are optimistic about reaching our goal in just a few weeks!

Last night, after everyone was in bed, I drove to the cemetery to put more water in the vase by Abigail's grave. I love to run my fingers over the laser-engraved imprint of her actual footprints (bigger than actual size, but exactly the right shape and lines). Of course nothing can replace actually getting to squeeze her squishy little one-of-a-kind left foot. It was my favorite. We called it her baby doll foot.

Yesterday and today I've been working on revision of my literature review about neural tube defects like the anencephaly that affected Abigail. Next week I will turn it in as my final for the class. It has been incredible to learn much of the science and the mysteries behind the miracle of embryonic development. Babies are miracles, every single one. That so much went right with Abigail's growth and development is a miracle, one we are still celebrating. I hope I get to be part of finding answers to lingering questions. It's a struggle worth giving in this life that's worth living.

Thank you again for your role in our story!

A Fundraiser for Our Medical Expenses

We never imagined our beautiful daughter would come to us in this way. After being in discussion with the hospital financial aid office, we now know what our final costs are for Abigail's birth via C-section and her one day of round-the-clock NICU care, as well as my ICU stay for one day.

It's big. It's bigger than what we can do by ourselves, so we are asking for help.

Please share our GoFundMe: https://www.gofundme.com/f/baby-abigail-changed-us-forever

When you share, you are doing two things. First, you're helping us to share this beautiful video put together by Mike Crockett that tells Abigail's story, how she spent one day with us, yet changed us forever. Second, you're helping us with a very real and pressing financial need.

Thank you for sharing and for your generosity. We know we can never pay everyone back for the help we have received and continue to receive. But we do believe in paying it forward. 

We have endeavored to be the kind of people who serve in church and community, help people move, and give to GoFundMe and Facebook fundraisers when people have the courage to ask for help. It does feel strange to be so much on the receiving end lately, but we know we must be realistic about our needs and not try to do it all on our own. We also, as I mentioned first, very much hope and believe that this GoFundMe fundraiser can be a vehicle for spreading Abigail's story and influence even more widely. God's will be done.

We love you and thank you for your love and support!

P.S. If you are uncomfortable donating through the GoFundMe website, you can donate via Venmo: @Katrina-Lantz-1

Abigail's 3-Month Birthday

Source: https://pixabay.com/photos/babe-smile-newborn-small-child-boy-2972221/

Tommorow, Abigail will have been 3 months old. She would be chubby and nap a lot. She would be able to respond to sounds, and make them as well. She would begin to smile a lot and start learning how to roll around on her blanket. I would hold her every time I got the chance and look into her beautiful face.

Today I asked my family how they are going to celebrate Abigail's 3-month birthday (Daniel and Ben couldn't do it because they are at their grandparents house).

Here is the video:

https://youtu.be/U-N4p5tjXHo

And me? I'm going (try) to sketch a picture of Abigail and put it on one of my mirrors so that I can see it every day when I wake up.

Happy Birthday, Abigail!

Collateral Beauty and Getting Old is a Gift

Abigail is a gift.

She came like a shooting star, passing through the night sky of our lives, then vanishing from our view. But her beauty and the majesty of her mission stay forever in our minds.

During America's stay-at-home order for the Covid-19 Coronavirus pandemic, which some people have suggested should be known as The Great Pause, many have pondered aloud about the blessings of Coronavirus. Obviously, pandemics are frightening. We worry for ourselves and our loved ones and we feel protective, isolated, and uncertain as we take steps to "flatten the curve" and mitigate the disaster suggested in the word "pandemic." However, many people have seen beauty in the sudden pause, the forced rest, the togetherness of families, the spontaneous and planned acts of charity, the productive and compassionate use of technology to connect and bring hope. It's all beautiful when you look at it that way.

How we look at things makes a big difference in the message we receive from it.

Shortly after getting out of the hospital, Bill and I watched Jumanji II again. It was a movie we had watched twice in the theatre while I was pregnant with Abigail. The timing of the comedian/actors was impeccable and I found myself laughing through the movie both times. We bought it as soon as it came out digitally so we could watch it at home.

This time as I watched it, I tried to remember how much I had enjoyed it before, and how Abigail had kicked up a storm in my womb as I laughed and laughed. There were sweet moments in the movie, too--lessons for the characters to learn and express. Self-appreciation, the importance of leaning on your friends in your vulnerability, and forgiveness.

When I first got home from the hospital, I was relieved to be home and not in a hospital. I was happy to have access to my other children again, to comfort them and enjoy their personalities. And I was driven toward the work that had to be done for Abigail's funeral. Many of the arrangements had already been planned and prepared beforehand. The casket had been made. The funeral gown had been purchased. The burial plot was ready and waiting, and I had written my love note eulogy while still in the hospital. But there were still things to do. I focused on helping Bill to gather his thoughts for what he wanted to say, encouraging our sons to practice the song they were to sing at the funeral: "Families Can Be Together Forever." I focused on welcoming family who came from out of town to help us honor Abigail. All of this felt natural and precious and time slowed down for it.

But after the funeral, I felt physically and emotionally exhausted. It was finally time to feel the backward motion of what can best be described as emotional whiplash. Had it really happened at all? Had Abigail been born, spent her whole life on earth in one day, and gone on to heaven? Had we buried her already? All in less than one week? My head and my heart spun with the surreal speed with which the entire thing had taken place. Time is a luxury we take for granted.

Now that Abigail was gone, I didn't want time. It seemed to stretch out in front of me for miles with no rest stops, an unending march toward my own death so far in the distance. I just wanted to crawl into that hole with Abigail and be buried, too. The fact that I had died, that my heart had stopped, actually gave me a worse case of survivor's guilt. Why was this sweet spirit gone and my crotchety old self still here? I'm 36 years old, but I feel ancient. Life has been incredibly long and more painful than I ever could have imagined before living it. I felt tired. I prayed and prayed and prayed for God to help me to feel like living again. He sent me little messages, in the form of a special card written by a friend or the words to a song, the embrace of a child, the face of my husband.

I could barely pay attention to the movie as we sat on our bed watching Jumanji II. My heart was broken and my will felt so weak. I related less to Danny Glover's cheerful, smiling character who always saw the silver lining and more to Danny DeVito's grouchy old man. His character had just undergone hip surgery and all he would say to anyone who would listen was how much getting old stank. Never get old, he advised his grandson, the main character of the film who was going through his own existential crisis.

Yeah, I thought darkly. Never get old.

But that moment of resonance was only leading me inevitably to the moment at the end of the movie when his character arc would be complete, and when he would say the line that struck me to the core.

As he's playing a video game with his grandson, he starts the familiar phrase he's been saying through the whole movie. "Growing old..."

"Yeah, yeah, I know," his grandson interrupts. "Growing old sucks."

But no, that's not how he was going to end it this time. "Growing old," he says instead, "is a gift." Cue the twinkle in his eye. My spirit felt like a live wire inside me, and I knew God was watching me watch this movie and putting that scene in my path so I would experience this moment.

I knew it was wisdom. And I knew, of course, that life was a gift from our Heavenly Parents to us. It just didn't feel like one anymore. Abigail's life had been a gift. I hung onto that fact, and I added to it the message I had felt resonate in my bones: my life is a gift. Living right now is a gift.

Since then, I have continued to receive these little messages all around me, because I've been looking for them. My search for meaning intensified the day we received Abigail's original diagnosis of anencephaly on November 8, 2019. After her death on February 26, 2020, this search goes on. I am especially looking forward to the April General Conference of The Church of Jesus Christ of Latter-day Saints this weekend because the words of living prophets are a bounty of little messages when you're open to receiving them.

Today, I tell people I am doing pretty well. I cry and I struggle against thoughts of worthiness and worthwhileness. I try to get back that surety that I have felt at various times in my life, the surety that allowed me to walk through the fire with Abigail in the first place. And I watch for messages from the Lord. I need them now more than ever before in my life. I need them just to get out of bed in the morning. They continue to come through my children's hugs and tears, through my husband's words and glances, through scripture, in movies and music and books, through friends and flowers, even a cloudy sky.

We are all walking forward.

Shortly after I came home from the hospital, I moved Abigail's bassinet into my bedroom, right by my side of the bed, under the window. It's where I would have put it if she had lived and we had brought her home. It's where I needed it now, even though she wasn't here anymore. I filled it with a box of 4x6 photos, mostly black and white, of Abigail's feet and hands and my children holding her, and Bill walking through the hospital with her like her sentinel in his Batman shirt.

And I filled it with baby blankets, all the ones she used in her hospital stay and the big one that had covered her throughout the night, the one my mom had crocheted just for her. On the top of the pile I put the preemie sleeper outfit that she had worn throughout that special day of being alive with us. It was a turquoise blue and said "Little Sister" in pink letters. It rested now, lifeless, on top of a swaddling blanket still stained, despite washing, from the piece of the placenta that had been her crown and constant companion in this life.

For the first week, I stopped by the bassinet before getting back in bed, and lifted the tiny outfit and blanket to my face. I tried to inhale whatever of her essence remained in the weave of the fabric. Until one day I lifted it and couldn't smell her anymore. I still looked at it, and held the big crocheted blanket my mom had made. It was almost as big as Abigail, all folded up on itself, and I held it to my chest as if it were her.

After we planted her cherry tree, I looked out the window as I held the blanket and imagined the cherry tree in full bloom with all its temporary seasonal glory.

When my kids came to visit me in my room during my recovery, they sidled past the bassinet and tried not to bump it too much because they knew that would upset me. We had family prayers around our bed, seven people crowded around on their knees with their arms folded as we prayed together each night before bed. The bassinet made it quite crowded on my side.

I knew I couldn't keep the bassinet there forever, but I wanted her blankets and her little owl where I could reach them when I needed them. Thankfully, one night I had a stroke of inspiration. That happens often when you stay up an extra hour lying in bed without distractions. I planned it all out in my mind, and then this bench became the solution.

Before we moved, it was put outside while we tiled most of the floors in our old house. When I asked the boys to keep busy painting the table and chairs white, someone painted this bench, too. It looked like a child had painted it. When we moved the furniture into the new house, there was no place for this window seat. The new kitchen had no outside wall and no window for a window seat. I put it outside by the grill and forgot about it. The other day I pulled out the cordless sander and did my best to add to its character, bring out some of that pretty burgundy red. My body is still very sore, so I only managed to give it a little more character, but I'm happy with my efforts. The bassinet is gone. All the blankets are in this storage bench, and the owl sits on top.

This will be a good place to sit and watch the cherry tree in bloom.

I sent the picture of the bench to my mom and sisters. My mom said, "You're not forgetting, just moving forward." That is right.

*sigh*

This is hard but necessary.

Abigail has been gone a month. I don't think I will ever get over it. But I am getting through it. We all are.

Last week, Bill and I pulled out another favorite movie, Collateral Beauty. I had been afraid to watch it because Will Smith's main character is a man who recently lost his six-year-old daughter to a rare disease.

It hits so close to home, but I needed to watch it again. His journey to acceptance involves writing letters to the three abstractions: Time, Love, and Death. So many of the things he writes to them are poetic versions of my own grief-stricken thoughts. In the case of this film, the title is the lesson, but the audience goes on the same journey as the main character to accept it--because at first it sounds like fluffy nonsense. The stages of grief do not often brook fluffy nonsense. We have to go through all of the main character's conversations with Time, Love, Death, and his ex-wife, before we can believe that there is any such thing as collateral beauty.

"It's there," the ex-wife promises him. And it really is. Bill and I have seen it, felt it, practically swam in it at times.

God is good all the time. There is a Divine Order, as Jeff Olsen says in his book, Knowing. Everything is in Divine Order, though it doesn't often feel that way to us. A simple search of chaos theory on the internet tells us how much we don't know about the way nature functions. What looks like chaos is actually order, and it is designed.

Whatever you're going through, I hope this can be one of your messages for the moment you need it. You are known and loved, cherished even. The way we cherish Abigail times infinity.

God not only loves us each profoundly, but there is a plan for our ultimate happiness. It can't be seen in intricate detail because the future is to be lived moment by moment. So I try to be content with my little messages: the glass butterfly I found in Abigail's garden (or did it find me?); the March snowfall that covered everything in a silent, serene white veil; the pandemic that halted the world for my grief.

There is definitely such a thing as collateral beauty. It's the part that makes life a gift worth living.

What Was Beautiful About Abigail

The moment I saw Abigail, I was in awe of her. I had been prepared for a baby with no face, so to find this baby on my chest who was so developed was a big surprise. It was reminiscent of some of my dreams in which someone was handing me a perfect baby while I lay in a bed. In those dreams I was always confused because we had been expecting the worst. 

In the video of that moment, where Bill is handing me our daughter for the first time and introducing us, you can't hear much of what we are saying. There is too much doctory noise in the ICU. But you can see in my face the wonder I feel, and you can read my lips when I say, "Wow."

What was so beautiful about Abigail was the life force that could be felt from her, the spirit. She was so clearly alive, despite her limitations which made her appear mostly unresponsive to her environment. She had reflexes but was mostly still and slept for much of her life, like a healthy newborn does anyway. Her presence is one I will never forget, though. Maybe other mothers and fathers will know what I mean when I say she had a quiet wisdom about her.

Wise babies, fresh from heaven, so filled with purpose. They are all amazing, aren't they? Abigail had that, too.

What was so beautiful about Abigail was the way she relaxed at the soft touch of love on her chubby cheeks. I could have stroked them forever, singing lullabies and watching her soak in the love.

What was so beautiful about Abigail was the softness of her cry and the wetness of her tears. I had no guarantees of hearing her voice, and the expectation was that she had no eyes. Yet we had the privilege of knowing her voice and her tears. It broke our hearts to know she was struggling near the end of her life. But wiping her tears and comforting her with our voices was part of that deep connection we formed with her during her tiny, brief life on earth.

What was so beautiful about Abigail was the way neither her hands not her feet were matching. Each limb ended with a different kind of hand or foot. The left hand and the right foot were visibly perfect, with a little kissie toe action (syndactyly) on the right big and second toe. But the left foot was clubbed and tiny, due to the amniotic band restricting blood flow, and we called that one her baby doll foot. It still had all its parts with five precious little toes. They were merely smaller and less standard in their appearance. Her right hand was also affected by the amniotic bands so that her pinky on that hand was a third of the size it would have been. Yet there was still a tiny triangular fingernail at its tip. It was my favorite hand. She closed her hands around our fingers when we touched her. Holding hands with my baby girl was another very special way we bonded.

What was so beautiful about Abigail were her perfect little ear lobes. They were so cute and perfectly formed. It was only above her ears that the skull had stopped forming. We loved singing and speaking softly into those precious little ears.

What was so beautiful about Abigail was the round little chin that looked so much like the rest of the Lantz chins. The beginnings of a chin dimple were there, just as all our other children had at birth. It was part of the joy we experienced on the day of her birth for everyone who held her to pick out these little family resemblances.

What was so beautiful about Abigail was the steadiness of her heart and how she fought to the end. Dreams had prepared me for this, but not enough. When her heart stopped beating against my chest and her breaths had been quiet for some time, I wept.

I kissed her ears and her cheeks and her eyes and her hands and her feet and her chin. I told her I loved her, and I rocked her little body, even though I knew she couldn't feel it anymore.

What was so beautiful about Abigail was that she was ours. She would have been ours, even if she had died in the womb or on the table in the OR. But she waited, and helped us to claim her as ours, maybe because she knew I needed that time with her.

My heart stopping in the OR didn't stop us from spending that day together. I responded lightning fast to the treatment of the anesthesiologist, and it's no wonder why. Death couldn't hold me back from her. I wanted to spend that day with her.

Our best day ever.

What was so beautiful about Abigail probably can't even be put into measly words. I'm still basking in her glow, through my grief.

Abigail had a certain glory in her body, but I believe she is even more glorious now. Free from pain and tears, she can smile now. Here she was as fragile and beautiful as a flower but in God's presence she glows with all the love she was created with and all the love we, her family, gave her here.

What is so beautiful about Abigail now is the scope of her impact, the lives she has touched for the better, and the way those ripples of love are still flowing outward into the universe. We will not forget her, the lessons God has taught us through her, or her connection to us as an important part of our family. For us she will always be present, in spirit or in memory.

How can we thank God for so much beauty?

One Week Birthday

Abigail Réileen would have been one week old today. We miss you, sweet baby!

#oneday

#foreverloved

#aliveinChrist

Abigail's Shower

We didn't have a baby shower for Abigail Réileen, but we have been so touched by all of your gifts! One of my favorites was from a little girl also named Abigail who came to our house and did a ballet dance for us. 🩰 Made me cry. We've received paintings and pictures, blankets and baby jewelry, a Christmas ornament to start our collection, flowers and other tokens of love and support. Another really meaningful one was the good friend who built Abigail's casket with Bill Lantz. We will always remember your kindness. 

As we begin the countdown from 7 days to Abigail's birth day next Tuesday, I am cherishing every movement and hiccup and hoping for all the memory making we are dreaming of. 

I can't really imagine life without Abigail, but on the other hand, I can't wait to meet her and hold her in my arms at last. 

Lots of mixed emotions. 

Thank you for waiting with us.  Your prayers have given us so much love and strength.❤️❤️❤️❤️

A birth plan, a funeral program, and hope

It's Sunday again, and we are 36 weeks along. Friday was Valentine's Day so Daniel (5) has valentines on the mind. He made this little heart during church and said, "This is for Abigail." 

It's moments like this that I remember how incredibly blessed we have been as a family. When we announced our pregnancy to the kids, they were all excited because they love babies. It's precious to my heart that they see a new addition to the family as cause for celebration.

We were all hoping for a girl, but the boys were the most vocal about it. Sad to say, it might be partially because of well-meaning friends and strangers saying things that make them feel incomplete without a sister, like, "Are you hoping for a sister this time?"

Even after we broke the news that Abigail would ultimately become an angel for our family, the level of enthusiasm for Abigail hasn't diminished. Finally, they have a sister. And even though she isn't staying long, she will always be their sister. They know we get to keep her forever. I'm grateful for that sure knowledge.

This afternoon we put the finishing touches on our birth plan and printed a few copies so the whole birth team can be on the same page. Once that was done, we worked a little while on the funeral program and I asked my parents to sing one of my favorite songs for the event. All of this while Abigail Réileen makes her presence felt with kicks and punches in my tummy. I love her so much already, we all do.

The guiding principle of our home right now is hope. We know what can and probably will go wrong when Abigail is born. There is no false hope, but there's a kind of hope nevertheless. It's a hope that is born of our love for her.

We hope everyone will get to meet her who needs to, and that we will be able to make memories with her after her birth.

We hope to celebrate her life with music and prayer and poetry.

We hope she will always have a place in our family and never be forgotten.

We hope that knowing her and loving her changes us in all the ways she would have it do.

We hope this difficult goodbye brings all of us closer together.

We hope in Christ we shall all be reunited in a higher, holier sphere where none are sick or wounded and all are restored to perfect health.

I have struggled against hope throughout this journey, this past week especially. I have cried and cried out because the waiting seems unbearable. Not this waiting for her birth, but the promise of more waiting after her death. I have wondered aloud to my husband how I can go on after such heartache. 

In answer, I have heard the voice of God saying, "Live for the Lord," and I have been humbled because I am a selfish creature. I always think I know what's best.

Remember the painting of the pioneer woman that takes up an entire wall in the Payson temple?

I told how I had heard the hymn in my head before realizing the painting's title was from that hymn: "Blessed, Honored Pioneer." Today I went to church and the opening hymn happened to be this song, titled, "They, the Builders of the Nation," Hymn #36 in the LDS Hymnal. Each verse's chorus is slightly different but ends with the line, "Blessed, honored pioneer." No wonder I had thought it was the hymn's title. As we sang it today, I realized that I revere my pioneer ancestors exactly for the incredible faith they showed while suffering the deaths of so many beloved friends and family members, while facing death themselves. And I realized that to future generations, we are the pioneers. Suddenly the song became a call to action for me, like the words I had almost seen in my mind's eye written on my bedroom wall: "Live for the Lord."

My eyes went to the bottom of the hymnal page and I knew I had to read the scripture associated with the hymn.

It is Doctrine & Covenants 64: 33-34

I couldn't help the tears that formed in my eyes. This must have been a scripture that gave comfort to my ancestors. They had to have been so tired of being persecuted, driven from place to place, and despised wherever they went. They had to have been weary of the daily work that never seemed to be enough, while many of them lost their children or husbands or wives to mob violence, disease, exposure and hunger as they crossed the plains.

In the super convenient modern world, I had found myself complaining to my husband that I am tired. And I am. I am so tired. But there is no way I could be more world-weary than they were.

"Be not weary in well doing, for ye are laying the foundation of a great work. And out of small things proceedeth that which is great."

Abigail is a very small thing. She is tiny. But she has carved out a large space in our hearts that drives us to be more than we were, to be worthy to see her again. And that is a great thing.

Verse 34 reminded me of the message I felt like I heard or saw, to "Live for the Lord."

"Behold, the Lord requireth the heart and a willing mind." It ends with the promise of good things to those who give their all.

There's another scripture that comes to my heart as I ponder on these things: D&C 122:8

"The Son of Man hath descended below them all. Art thou greater than He?"

Of course, even these gifts of understanding don't make me totally okay or past my grief. In fact, sometimes they are met at first with bitterness. But I can't deny they are gifts. They are the grace that is sufficient to the day. They teach me line upon line and give me strength to take the next steps in my life. They give me that precious ingredient for a life of joy:

Hope.

Born the Same Month as Her Brother

Source: https://pixabay.com/photos/michelangelo-abstract-boy-child-71282/

My birthday is coming up tomorrow (Feb 8th), but I'm not quite as excited for that as I am for Abigail's birth. I used to think that it was coming in March, which was true until Mom decided to have an early one on the 25 of Feburary. "Is that OK?" she asked me. I was astonished. Why would that not be OK? Then it hit me. My mom was born the same month that her older brother was. My uncle's birthday is a day before my mom's. He is exactly 4 years and a day older than her. Now I saw why my mom asked me that question.

I am both excited and nervous for Abigail's birth. Being nervous can be a good thing sometimes. I once went to a Tween Author Boot Camp. I was very nervous. The last thing I expected to happen was that I would win. Those who didn't win were thrown into a pit (I just made that up but it was still pretty scary). I won first place in my age zone. That experience exceeded my expectations greatly. I'm glad I didn't have pride before I knew the results because I would have had less enthusiasm finding out that I won. I believe that being nervous for Abby's birth is a virtue. I know that she will bring love to our family. I know that she will do other great things for us that we just don't know about yet.

Source: https://pixabay.com/illustrations/puzzle-heart-love-two-hearts-1721592/

I can tell that my little sister's birth will be a very special one. I can feel her love and I know that she will never really die. I will always have room in my heart for her. Nothing can give me more peace than to know that she will always be here with me. I am proud to say that I have an angel as a sister. Abby is my angel friend now and forever.

BIRTH UPDATE:

Abigail's birth was very special. You could just feel the love reflecting off of Abby and onto everyone else. She is and was a very special baby and we love her just as much as she loves us.

Searching for Mission and Meaning

Abigail Réileen is very loved. Every day we tell her we love her and I can feel that love like a wave through my body as it travels from my thoughts into her experience in the womb. It's one of the few gifts I get to give to her.

As I seek ways to honor her and also to rediscover purpose, mission, and meaning in my life, I am pleasantly surprised to find that there is something I can do right now in my life as a student at BYU majoring in Neuroscience.

In my path toward graduation, it's time to join a lab. Yesterday I visited with Dr. Stark and discussed what it would take for me to join his lab. He is doing work on the molecular basis of neural tube defects like Anencephaly and Spina bifida. One night when I couldn't sleep, I went to BYU's neuroscience department website and searched the labs and research going on at BYU. When I came across Dr. Stark's brief description of his research, my heart leapt.

Even though Abigail doesn't have classical Anencephaly, because hers was caused by amniotic band syndrome interrupting development of her head, I have gotten to know many other Anencephaly mothers through the process of coping with our initial diagnosis. We have something in common because we have all been told 1) that our babies are going to die, 2) that there is nothing anyone can do, and 3) that it isn't our fault and nobody really knows why it happens. For future pregnancies these women are often prescribed high doses of folate to protect against neural tube defects. But even so, some of them still have a second baby with Anencephaly. Many of them have rainbow babies, a healthy baby after an infant loss, but never stop wondering how their angel baby happened.

I know first-hand how understanding can be a salve for grief. Clarity goes hand in hand with comfort for those of us who just need to know. And knowledge is power, especially if research can find something more in terms of the factors, genetic and environmental, that are leading to this blip in development within the first thirty days of an embryo's life.

When I saw Dr. Stark's research, I felt joyful. An oft-expressed lament in the Anencephaly group is that the medical industry is disinterested in our babies. They often simply recommend termination upon diagnosis, as if it won't feel like as much of a loss if we stop the baby developing before we feel him or her kicking in there. But there's no hope given for the possibility of life, and it feels so wrong that nobody is doing anything to try to save these babies. As a parent all you want to do is protect your child. When I saw that someone IS doing research on the developmental hiccup that causes Anencephaly and Spina Bifida, I felt happy.

So I waddled across the BYU Life Sciences building and braved the stairs yesterday in order to meet Dr. Stark. On my way there I saw this sign.

I wonder at what God has done in my life, bringing me to this place where I may be in a position to help others.

It's not a done deal for me to work in Dr. Stark's lab. I have preliminary work to do before I can be accepted, and Abigail's scheduled birthday is in three weeks, so much of it will have to wait until my whole family is in recovery mode. It gives me hope to think that I may have a purpose going forward, that there is something beyond this monumental countdown to Abigail's birth.

If nothing else, it makes me happy to see that research into this phenomenon is ongoing and that a driven and capable scientist like Dr. Stark is doing it. Through him I've learned that others are doing research, too. Where Dr. Stark is studying the biological mechanisms and how known instigators of neural tube defects actually work, others are studying the genetics angle. Of course none of this pertains directly to Abigail's amniotic band syndrome, which doctors have explained to us as a "fluke." And even if it did, it wouldn't guarantee us more time with Abigail. None of this brings back the children of these other women, either.

All we have been left with is a forward-facing mandate to keep living for our babies and our surviving family. And that has to be enough.

A Spoonful of Sugar-Coating

January 7, 2020
I've mentioned how powerful and peaceful temple service has been during this time, helping me to grasp at eternity and to broaden my perspective to see Abigail's life in terms of forever, rather than the deeply felt loss of her life here on earth. Last week, we missed our temple date because Wednesday fell on New Years, and we just didn't make it out the weekend after.

This, combined with a rather unpleasant visit to the doctor's office on Friday, sent me into a dreary gulch emotionally that lasted beyond the weekend. Despite a long and cathartic conversation with my amazing midwife, I've struggled to shake this wave of grief. It's a grief renewed by some phrases and images conjured by a doctor who thought I needed to relive the diagnosis of ABS (Amniotic Band Syndrome) and the prognosis of certain death for my baby and potentially a very difficult labor for both of us.

He had communicated with the maternal fetal medicine doctor about her findings via ultrasound, and for some reason thought I needed a rehashing of the situation and his own worst-case scenario fears.

This was unwelcome and unhelpful.

Since November 8, I've gotten used to the phrase, "I don't want to sugarcoat things, so..."

It's not my favorite phrase. Like I've said, I'm the type of person who asks questions and wants to understand the full picture. I appreciate honesty in medical practitioners.

I also value my emotional health and sanity, and I understand that where you train your focus can often build your reality in incredible ways. I wish more medical practitioners understood that the mental and emotional state of a woman about to give birth is intimately married to her outcomes. A woman in panic will not have a peaceful birth. I can only imagine how a woman in grief will fare. As I fight for my emotional well-being in the face of discouraging worst-case scenarios, I could use a little help from the people tasked with supporting my physical well-being.

Mary Poppins famously sang about a spoonful of sugar helping the medicine go down. I appreciated the way Dr. Feltovich struck this balance. She may have had fears and worst-case scenarios going through her head, but she wasn't bent on planting them in my imagination. She didn't sugar-coat things, but she didn't knock the spoonful of sugar from my trembling hands either.

My biggest complaint, and this comes out of my gulch, the one I'm still trying to fight my way out of, is that some obstetrics practitioners take their detachment to an extreme. I am weary of hearing about how they are going to prioritize my physical health at the expense of Abigail's, simply because her expected outcome is poor. I am tired of being told that, since she's going to die anyway, the goal is to get her out without too much damage to me, as if she weren't real or important.

That's my baby you're talking about.

I know that people generally don't know what to say. Heck, I don't know what to say either. That's why you see so few comments from me after other people's beautiful and supportive comments on my facebook posts or here on the blog.

My wish would be that everyone who has something to do with bringing Abigail into this world could be on the same page about something: she's a person. She's our person. We LOVE her. We are grieving her and celebrating her at the same time. The language we use to talk about her is not detached, and we don't want your language to be detached, either. We are all humans dealing with other humans, and Abigail is just as human and just as valuable as I am. We want her birth to be handled with human dignity, and not with fear-based urgency.

I am trying to learn from the many, many mothers and babies who have gone before Abigail and me. One thing I've heard repeated from these mothers is how they wish they had spent less time dreading or fearing or mourning the future outcome of their angels, and more time enjoying the life within them. I feel that the well-intentioned lack of sugar-coating is creating more obstacles than we need to the goal of celebrating and enjoying Abigail's life while she is here.

It is unlikely that I will die during Abigail's birth, but if I die, it was meant to be. Neither of us needs for our final days to be made up of fearful dialogue and depressing thoughts.

I'm watching on social media as my favorite people all make New Year's Resolutions. It's a joyful and optimistic time for most people.

It's a beginning.

Though I know that something difficult and devastating awaits my family in the first few months of 2020, I also want to focus on what I can bring to this new year. The message I feel coming strongly through the veil between heaven and earth is to trust God in everything.

The saying goes that the devil is in the details, but I love to say that God is in the details. I have witnessed many miracles throughout my life, from prayers for the starting or stopping of rain to priesthood blessings to overcome serious illness. I have cheated death a few times, with angelic aid. I have healed from past trauma and sin through the atoning grace of Jesus Christ. All life is a miracle that I witness every day, flowers, mountains, pets, and people.

On facebook, a friend shared this Carrie Ten Boom quote:

NEVER BE AFRAID TO TRUST AN UNKNOWN FUTURE TO A KNOWN GOD.

The future is always unknown. Prognosticators will try to predict it, and we will always have wars and rumors of wars to keep us busy and fearful. But, "...God hath not given us the spirit of fear; but of power and of love, and of a sound mind" (2 Timothy 1:7).

That doesn't mean that difficult things don't exist. They are here mixed in with the good, like the life-constricting amniotic bands mixed with the life-preserving amniotic fluid in my womb right now. Opposition in all things is what makes this world grow and each human heart beat against the anarchy of the blood. We push up through the soil or out of the chrysalis or egg shell, and are born, over and over again, until we become ready for that final birth, the one called death. And there we are promised to enter into Christ's rest.

As my husband gently reminds me on a regular basis, because I need the reminder, we ARE keeping Abigail. But if we were allowed to keep her here on earth, Abigail would have soon learned to love to dance as much as I do. Like my five-year-old said, she would have gone to ballet with me. This necklace is the one I wear to remind me that she does dance. Club foot or no, she is dancing now in my womb. And soon she will dance with all the heavenly hosts. I do believe that one day we will dance together.

That's hope. It is as real and powerful as fear. Today, I choose hope.

Feel free to hope along with me, and thank you for the prayers and emotional support you have given to me and my family. I will never forget it.

The Journey to the Fire - Discovering Abigail's Diagnosis

I think the hardest thing is seeing online yard sale posts for baby swings, carseats, and cribs, things that just a month ago I was in the market for. At my appointment today (December 13, 2019), I learned that Abigail's specific condition means she will likely be stillborn, though it's not possible to predict for certain. Any dreams I had of laying her in her bassinet are fading. We probably won't get to meet her in this life. The only good news today was that her heart is still going strong and steady. Her heartbeat is perfect. I'm not ready to walk through this fire, so I'm glad she's not ready either. We will just stay like this for a while, connected and in love. 💔

When I came home, this note was tucked inside my door. Not everyone knows about Abigail yet, so I'm not sure if the writer of this note knows of our sorrows or not, but since we've moved to this small town in Utah, we have been visited by so much genuine Christian charity. It has definitely made a big difference in how supported we have felt through this journey so far.

The Maternal Fetal Medicine specialist I saw spent nearly two hours with me under ultrasound. We took one break in the middle so I could get up and walk around for a bit. For the doctor it was an intellectual challenge to decipher the ultrasound images to find exactly what we were dealing with. For me, it was an emotional challenge to lie there and process what I was understanding from our conversation. The doctor was pleasantly surprised when I asked about Abigail's meninges, the covering membranes between the brain and skull in a normal healthy person, and when she found out I had been taking Neurobiology, she was kind enough to talk to me as if I were capable of understanding what she was seeing. This was nice. Even though a fair bit of the vocabulary she used was still over my head, I feel I was able to get a much clearer picture of what is going on in my womb with my precious sweetheart baby.

Remember how I had said that Abigail's body was utterly perfect except for her head? Today we found out that it's not the case. Abigail doesn't have classic anencephaly, which is a neural tube defect where the tube doesn't close all the way at the top and the skull and brain don't form correctly. Instead, something went wrong quite randomly in the earliest days of pregnancy. The condition is called ABS, or amniotic band syndrome. The amniotic membranes around the baby rupture for some unknown cause, and the resulting bands of amnion can wrap around the baby's body, fusing with her skin, and, most importantly, interrupting development. This is what caused her anencephaly/acrania.

We have received much emotional support from an anencephaly support group on facebook for parents and grandparents dealing with the grief and joy of carrying a child to term after this diagnosis. We have so much in common with them because of Abigail's facial and cranial deformities and the reality we face of her impending death. But it didn't take me long at all to realize that most of the other parents on the anencephaly page were giving birth to babies with nearly normal faces, the only disruption being the back and top of the skull which were usually covered quickly by a baby cap after delivery. These babies look so sweet and, as I said, nearly normal. I already knew Abigail didn't have the same situation, and every time I saw the beautiful faces of the anencephaly children, I felt a twinge of jealousy that they could look into their baby's eyes. Before our appointment, we didn't know if Abigail had any eyes. And I knew, after my Chemistry professor handed out earplugs for a particularly ear-shattering classroom demonstration/combustion, that she couldn't hear because she didn't stir a bit when the explosion sounded.

During the appointment, we looked for eye sockets, anything that could be eyes. Even the experts couldn't find her eyes. She has lips and a nose, but the rest of her head consists of miraculously wired but abnormal brain tissue. This brain tissue allows her to move normally in the womb and her heart to beat strong and steady, keeping her alive with me. She is strong and beautiful in her own unique way, but she doesn't have what the rest of us were blessed with. She is blind and deaf. These were sobering realizations for me.

When the doctor saw that her little hand was actually classic to amniotic band syndrome, she began to form her theory. She searched around some more and found a club foot, also tied into the amniotic membrane. It also appears that amniotic band syndrome was the cause of her interrupted cranial and facial development. The skin of her head is tied into the placenta along the wall of my uterus. She seems to have one free hand and one free foot, normally developed, which are active every single day and help me to feel a connection to my child for which I will always be grateful.

When I got home, I visited a support/awareness page on facebook for amniotic band syndrome. Again, I found that Abigail's case is more severe than most. So many of the pictures on that page were not of tiny babies fighting to live but of healthy older children missing whole fingers, or hands, or legs. They used hashtag #luckyfin and were happy and adorable, despite their struggles.




There is even a famous NFL player with ABS who is missing a hand and rocking the football world. But in Abigail's case, the amniotic bands had taken more than a few fingers or a leg or hand. They had interrupted the normal development of her whole head. They had taken her chance to live beyond birth.

As the doctor prepared me for what birth might be like with a child who is so sewn into her membranes, I cried and cried and tried to be brave. She will most likely come out all at once, and she will most likely be stillborn. There is no way to predict for certain because babies have presented themselves to the world in many miraculous ways, despite diagnosis and prognosis. But given what we can see in the 3D ultrasound, it's not encouraging. Abigail has been alive for over six months, and she has less than three months left of life on this earth.

Less than three months to live.

In all the time she has been here, she has been living vicariously through me. She eats what I eat. She breathes the quality of the fresh country air I breathe. She experiences the vibrations and to some extent the emotions that I experience. To know her physical experience precisely would be impossible. There is still so much specialists can't perfectly determine about the function of the normally developed brain. Abigail's one-of-a-kind brain is a whole different story. However, I draw strength from the faithful words of my Neurobiology teacher, that Abigail's "spiritual senses are perfect." I believe that. I believe that she is having a physical experience that is suited and custom-made for her, and that her spiritual processing of that experience will stay with her forever. She will forever be bound to us in the love we share, and she will forever be "bone of my bone and flesh of my flesh." Our heartbeats pound together and settle down together. She is experiencing our family on a physical and spiritual level. She is ours and one of us, and these are the truths that really matter as we gear up to celebrate Abigail's first Christmas with the Lantzes.