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!

Abigail's Gifts

Not everyone can say that they have baby sister in heaven. I can. And I love her so very much. I gave her two very special gifts. 

Above is a picture of my two stuffed animals. The one on the left is the one from my birth. I once lost it and my mom bought me another one (the one on the right). I eventually found the stuffed animal that I got from my birth. I always wondered what I would do with the second one. Now I know exactly what to do with it. I am going to give it to my sister. I know that even though she can't really play with it, I have something to remind me of her. I will never lose it again the first one again.

Above is a letter that I wrote to Abigail. I am going to keep the pencil somewhere safe. Here is the text if you can't see it:

Abigail,

You mean everything to me. You give me so much hope. I love you. I love you so so much! I know that even though you probably won't live long on this earth, you will live forever in my heart. I can't wait to see you in heaven someday.

Till we meet again,

Sam Lantz

I know that God loves Abby and I and that families can be together forever. These gifts will help me remember Abigail and keep me close to her. No one can take my hope away.

Hope, Not What I Thought it Meant

Source: https://pixabay.com/photos/hands-open-candle-candlelight-1926414/

I used to hope that my sister would miraculously survive. Now I know that that is not what I should be hoping for. Now I hope that Abby will help our family become spiritually stronger. 

I did a short study on the word "hope".

In 2 Nephi 31:20 it says:

"...press forward, having a perfect brightness of hope..."

That scripture teaches me that if you lose everything, you can still have hope, and if you have hope, you have faith, and if you have faith,  you have God,  if you have God, you have everything you need.

Hope can also be defined as "a feeling of expectation and desire for something certain to happen."

I used a search engine that shows the origin of certain words. I looked up "hope" and this is what I found:

"Some suggest a connection with hop....on the notion of 'leaping in expectation' [Klein]."

"Late old English hopa 'confidence in the future,' especially 'God or Christ as a basis for hope,'..." 

There is also "Old Frisian and Middle Dutch hope, Danish haab, [and] Dutch hoop"

I also realized that "hope" sounded like "hoop" since the formal is eternal and can never be taken from you.

I also like the explanation hop for "leaping in expectation" listed above.

Words that are similar to hope are faith and trust (but not pixiedust!).

Here is a quote that I found:

The people of the Earth Kingdom are proud and strong. They can endure anything, as long as they have hope.

-Prince Zuko; Avatar, The Last Airbender 

Now I see that I was hoping for the wrong thing. I now know what the true meaning is. I know that Abigail and I will see each other again. I hope that she helps my family to be worthy enough for the Savior's return.

That Unsettling Feeling

Source: https://pixabay.com/photos/children-siblings-brother-sister-817365/

I love my sister. She may not be here physically, but she is always will me spiritually and I pray for her and I think about her everyday. I have been wanting a sister for a long time. My prayers are being answered, just not in the way that I expected or even wanted to expect. I know that my sister isn't going to have a perfect physical body but I know that she is going to have a flawless and whole body in heaven and that she will be waiting there for us. And I know that her spiritual body is and will be very beautiful. Here is my version of the story:

Today I was very excited. I was going to BYU with my family! We were going to eat chocolate-covered cinnamon bears and visit the bookstore. I hopped into the car with my family and we drove to the campus. After that, we were going to get an ultrasound for mom. Me and my siblings were really hoping for a little sister. 

Mom had some classes she had to go to. We waved to her goodbye and she went on her way. You can't forget the walk all the way to the building. Dad, my brothers, and I did all kinds of things like rolling down the huge slope and getting some snacks (remember the chocolate-covered cinnamon bears?). We went to the bookstore and to the art gallery.

It took a while but we finally got together with mom again. We drove to the place where we would get the ultrasound. When we got word that we were having a sister I was very excited. Though, I didn't feel the same excitement that I did for the last baby.

Something didn't feel right.

Sure enough, there was something that the ultrasound guy didn't recognise. He told my parents to get another ultrasound from someone with more experience. I looked at one of Abby's pics and saw that there was something probably blocking her face. Or was that just my imagination? 

I tried not to be too worried and told myself that it was going to be okay. I just hoped that my mom and the baby was going to be okay. 

Later, I got news that Abby had a syndrome. My mom said that it was anencephaly. Anencephaly. Anecepyhaly. That sounded familiar. It was in my mom's Neurobiology book! I was not expecting this! My sister had a syndrome that my mom was studying in Neurobiology! 

Source: https://pixabay.com/illustrations/brain-anatomy-human-science-health-512758/

I was sad as I tried to hammer the reality into my head. I was finally getting a sister and she was going to be deformed! I knew that I was going to find peace eventually. I knew that God was willing to help me in my sorrows. And most importantly, I knew that Abigail and I would be together for all eternity.

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.

Peace Like a River

For thus saith the LORD, Behold, I will extend peace to her like a river, and the glory of the Gentiles like a flowing stream: then shall ye suck, ye shall be borne upon her sides, and be dandled upon her knees. Isaiah 66:12

On Friday, Saturday, Sunday, Monday, and Tuesday, we grieved for Abigail. My heart broke. Bill's heart broke. We cried and we toyed with hope and then felt hopeless again.

On Wednesday, we went to the temple.

In the temple we do vicarious work for those who have already passed, and the veil is thin there. People have seen visions and felt the presence of loved ones long gone on. As we go through a ceremony of an ordinance for someone else who has left his or her body behind on earth, we also get to remember when we went through this ceremony for ourselves, and it's a beautiful reconnection with God. It's a time when we remember our promises to Him and His incredible promises to us. Bill had a family name, an ancestor whose ordinance work hadn't been done yet, and he brought a little piece of paper with that name to the temple to go through the ceremony on his behalf. I didn't bring a family name, but planned on getting one in the temple. On our way in, we met with a woman who asked me to take one of her ancestors' names for the ceremony.

This was our first time in the Payson temple. We moved up here in July, at the very beginning of my pregnancy and hadn't been able to get all our temple things together to go until now. I looked up at the beautiful building and took a deep breath. Temples have always been places where the Prince of Peace can reach me with His peace. We went inside, changed into white clothes, and met in the temple chapel where we waited with others who were about to perform the ordinance. We met Bill's parents there in that quiet, contemplative room. In the pews, there were book holders containing scriptures, and I picked up a copy of the Book of Mormon, opening it up randomly. It's one of my favorite ways to hear from God. I opened it to Moroni chapter 7 and read:

"Wherefore, my beloved brethren, have miracles ceased because Christ hath ascended into heaven, and hath sat down on the right hand of God, to claim of the Father his rights of mercy which he hath upon the children of men?
....and because he hath done this, my beloved brethren, have miracles ceased? Behold I say unto you, Nay, neither have angels ceased to minister unto the children of men." (verses 27 and 29)

I silently thanked God for these passages of scripture which spoke to my heart and told me it was not at all wrong for me to pray for a miracle.

If you have walked through a temple prior to its dedication to the Lord as His house, you have seen a Celestial Room. It usually has a high ceiling and chandelier, and is like the Holy of Holies of ancient temples, except that instead of there being one priest allowed inside with a rope tied to his leg, all who have come to covenant with God in the temple are admitted into it. The ceremony ended here and we sat on a couch and prayed and whispered reverently to each other. I was happy to see my parents-in-law there, and they spoke words of comfort to us. Abigail will be ours forever. She will not ever be truly gone. And she counts as one of our children. These true ideas had been difficult to get hold of. They kept slipping away from me as I was grieving before. But here, in this holiest place, I felt the truth and the comfort wash over me.

My soul experienced a vast transformation from the sorrow, anger, fear, and deep grief I had been feeling before. The grief was still there, but all fear and anxiety and anger disappeared. That night, I slept sweetly and awoke with words from the ceremony running through my mind. I repeated them in my mind over and over again, cherishing them and turning them into a prayer for Abigail. God's promises are sure. His love is real. His peace is unlike anything this world has to offer.

On the previous Monday, I had stopped by a store to pick up some clothes for Bill, and almost hit a whole flock of seagulls, Utah's state bird, sitting there on the asphalt.

Seagulls are the state bird of Utah for a very special reason. It hearkens back to the days of the Mormon pioneers who settled here and experienced the highs and lows of farm life right off the bat. A whole crop of wheat, still tender in the fields, was being devoured by a swarm of locusts. The pioneers went out with pans and bonnets and anything they had to beat back the swarm in a desperate attempt to save their fields from the devourers. And they prayed for a miracle. God sent an enormous migration of seagulls to devour the devourers and the pioneers were saved.

When I was a teenager, only fourteen years old, my mother made me a gorgeous pioneer dress with a full-circle skirt for dancing so I could be part of a pioneer play called Promised Valley. I didn't play a specific character, but I did get to sing and dance and act, and I will never forget taking off my bonnet and smashing at invisible "crickets" during the scene that reenacted this miracle. Seeing these seagulls at such a moment, when I was in the middle of my worst grief was a small miracle. And yet, I had so much trouble accepting it. It was as if they represented someone else's miracle, not mine. At that point, I was sure I would not be receiving a miracle. Who can argue with an ultrasound image like that? My baby was going to die and there was nothing I could do about it. No amount of healthy eating or daily walking would change what was. Neural tube defects are not something that resolves by itself in the womb before birth. 
It was just a flock of seagulls.

But I took a picture and kept it in my heart.

Sunday, that permission from the Lord to pray for and hope for miracles soothed my soul, and I came to see the seagull as a symbol not just for their miracle, but for all miracles.

Right next to the women's dressing room in the Payson temple is a giant painting of a pioneer woman holding a little girl while looking down at the sunflowers that have fallen from the little girl's hands. The expression on her face held me captive as I passed it, and I stood for several moments just connecting with her in her sense of loss. I knew that she was grateful for the child in her arms but that, all the same, she was experiencing grief. I knew that look because I had been wearing it for the past several days.

Loss looks the same on everybody, I guess.

And yet, there was a quiet strength in her visage, and I drew strength from that, too. Not only did this pioneer woman survive through everything that had happened to her, but she was only just beginning to create the foundations of a beautiful culture in a new land. She had more to give, even though her heart had been broken. There was just so much of the tragic and hopeful mixed in this painting, that I couldn't get it out of my head. The next morning, I was still thinking about it, and talked to my husband about how it had made me feel. Then I started singing a hymn: Blessed, Honored Pioneer. I didn't even know I knew so many of the words to that song. It is rarely sung except on July 24th, for Pioneer Day in Utah. I decided to look up the painting so I could see it again, and was awestruck when I saw the title: Blessed Honored Pioneer.

I cannot reproduce the picture here, but if you'd like to see it you can either visit the Payson Temple yourself or see it on the artist's website. Because it was commissioned for the temple, it is not sold in prints anywhere, so these are the only places you can see it.

Blessed Honored Pioneer

As if this weren't enough communication from heaven, there was more as the day progressed. On my way to class, I began to feel the anxiety creeping in again, and I determined to hold on a little longer to the peaceful spirit from the temple. I turned on the narrator on my Gospel Library app and listened to Moroni chapter 7 read aloud to me while I drove. It was comforting to hear those words again, and in the context of the chapter. It was a letter from Moroni's father, Mormon, to him. My scripture app automatically went to chapter 8 when chapter 7 was finished (it's a long drive) and I was startled to realize that the very next chapter was about infants who die without baptism, or the baptism of infants.

Verse 8: Listen to the words of Christ, your Redeemer, your Lord and your God. Behold, I came into the world not to call the righteous but sinners to repentance; the whole need no physician, but they that are sick; wherefore, little children are whole, for they are not capable of committing sin; wherefore the curse of Adam is taken from them in me, that it hath no power over them...

Little children are WHOLE!

For a mother with a baby that had just been diagnosed with a defect that left her without parts of her skull, brain, and face, these words could not have come with greater power. I was struck by the word "whole." It is comforting to know that my baby, whether she dies in the womb or lives a few hours or days, will be whole in Christ. When I meet her, on this side or the other side, I will see her that way, knowing she is whole eternally because of Christ.

I am thankful for the temple, for scriptures, the word of God, and the power of music and art in communicating to my heart. There is so much to be grateful for, though I still don't understand why this has happened and is happening. I know we are not alone. As my mother keeps reminding me, God loves me and God loves Abigail, and He has a beautiful plan. I just have to believe that there is beauty in this and that one day I will see it.

Not the News We Were Expecting

It certainly caught me by surprise.  I had happily taken the morning off of work so we could drop the boys off at their grandparents and Katrina and I could visit the ultrasound tech in peace. We were waiting outside for the tech to show up with my for-some-reason-sunburnt nose.  Katrina and I were laughing and joking with one another about the day and about our boys.

When the tech finally showed up, the office wasn't ready for visitors at all.  He had to move some items out of the ultrasound room and there were business cards all over the floor.  When we got into the room, the ultrasound projection screen wasn't working, so we tried to help him figure out what was going on.  He was able to find another screen that worked, so Katrina laid down in her spot on the cold bed and I took a seat next to her.  All these things added up to us just being in a real silly mood.  Maybe Heavenly Father was preparing us for the news were about to receive?  I really don't know.

It couldn't have been more than a few moment of the tech looking around at the baby, but sitting there in silence for those few moments got me uneasy.  I mentioned to Katrina that she should tell the tech what brought us to his office that day, how the college student who did the first ultrasound had though he saw a bubble or something around the baby's head.  After Katrina briefly explained, the ultrasound tech said that it looked like our baby had a pretty severe case of Anencephaly.  What the heck was that?  He started using words like "not viable" and after that, I couldn't really pay attention anymore.  My head started to spin and I had to leave the room. I walked into another room in the office that was a birthing room and sat down and put my head in my hands.  All I could think of was "what does this all mean?"  I sat there for a few moments and then got up and walked around again, not quite ready to go back into the ultrasound room.  "I figured she she might have a facial deformity" is the thought that kept going through my head.  "I never thought it would come to this".  This felt like too much to take in.

After what felt like forever, I went back into the ultrasound room, having no idea what they had talked about while I was gone, and it wouldn't have mattered, I could only think of "not viable".  I vaguely heard them talk about other options, more ultrasounds, 3D/4D to identify how severe the anencephaly, blood tests and the such that would cost quite a bit of money.  It's all pretty vague now.  But the next thing I remember, the tech is giving us hugs and telling us how sorry he is.  He gave me a big hug and refused to let go of my head for about 30 seconds.  It was probably good because I felt overheated and like I was going to faint again.  We got out of there with tears rolling down our faces and the little girls from the other family in the waiting room asking their parents what was wrong with us.

The drive back to my parents was even more painful.  In between tears, any talk of Abigail just brought more and more tears.  Were we not going to be able to see our little Abigail alive at all?  Were we going to have to go to the hospital to have this baby?  Were we going to go in for more tests to see if anything could be done?  Were we going to get to have our little Abigail forever?  The car ride felt like forever.

I just had to tell my parents that day.  We both couldn't imagine showing up to their house with our eyes all red and try to play it off like everything was fine.  I asked my parents if I could talk to them in another room and they knew something was wrong immediately.  One of our kids had told them about how the first ultrasound guy saw something off, so they knew we would have some kind of news.  I barely held it in, but was able to get out what I wanted to say.  Of course my parents were very caring and loving as they always have been, and offered to help pay for anything we might need.  All I needed at the moment was their love and concern and that was enough.

Katrina and I drove home in silence, with the kids being loud and playful in the back.  We talked briefly about the treats we were going to get and decide on the movie we were going to rent for them, but other than that, Katrina and I sat in silence.  Any mention of Abigail might have made the tears come flooding back.

We sat the boys down before we watched the movie and explained what was going on with Abigail.  The reactions were varied, as you'd expect from a group of kids from all different ages.  Layne, thinking of his favorite book/movie Wonder, wanted to find a solution to the problem.  Sam sat there in silence.  Ben had a few questions.  The two youngest were barely paying attention.  Afterwards, I barely felt like watching the movie.  I went into my bedroom and sat next to Katrina on the bed.  There was a lot of crying off and on the rest of the day.  I tried looking up anencephaly on my phone, but could barely stand reading anything about it.  I went to sleep that night exhausted and not knowing what or how to feel.