Showing posts with label neural tube defects. Show all posts
Showing posts with label neural tube defects. Show all posts

Wednesday, 17 June 2020

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


Saturday, 13 June 2020

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!

Wednesday, 3 June 2020

Homework

I finished my rough draft of a literature review on neural tube defects a few days ago. I still have the final draft to polish, but I'm happy with the progress I've made on the assignment so far. I chose neural tube defects as a topic because of Abigail. Her case of anencephaly was not classic. There's a different biological basis for her amniotic band syndrome than for classical neural tube defects like anencephaly and spina bifida. But even though her case isn't described in most of the studies and reviews I have read for this paper, a birth defect that impacts hundreds of thousands of babies each year worldwide is worth investigation. I feel a closeness to the other mothers in my anencephaly Facebook group. Our babies died of the same lack of a cranial vault and complications deriving from that. Learning more about anencephaly and its opposite neural tube defect, spina bifida, has been satisfying. I feel like I'm doing something.

I shared about this on my Facebook author page in a live video:



One thing I mention in the video toward the end is how hard it is for people to understand sometimes how parents feel when they receive this type of diagnosis for their babies. Sometimes medical professionals and others think terminating the pregnancy post-diagnosis would be the easiest thing, but it's not easy. A loss, at any stage of pregnancy, still feels like a loss. Pain is pain. Grief is grief. It does no good comparing one with another because these feelings are always keenly felt. They always feel huge. What most parents want, if they are shown their options and given enough information, is to have as much time with their children as possible. As a parent with intimate knowledge of how this feels, I feel like I have something to bring to this study that may be valuable to medical professionals and scientists. I want to study this more. Like I said, it makes me feel like I am doing something. I hope one day I will be able to add value to this scientific and human discussion on neural tube defects. For Abigail. For all the children with neural tube defects. For all the parents who are grieving and remembering their little ones.

Wednesday, 1 April 2020

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.

Wednesday, 5 February 2020

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.