A Year From Abigail's Anencephaly Diagnosis

Here, in pictures, is my path on campus to my one in-person class.

I'm thankful today for professors, guidance counselors, and teaching assistants whose personal interest in my success has buoyed me up through what has been the most difficult year of my life. 

November 8 marks a year from the day we received the fatal prognosis of our first daughter's anencephaly. 💔

I still remember going to class the next time after and staying after class to tell my neurobiology professor about the anencephaly diagnosis. She hugged me and gave me the best comfort she could have given me about the reality of my daughter's spirit despite this birth defect.

Since then I have received nothing but support from every teacher. It hasn't always meant a good grade in the class or an easy time. It hasn't meant that at all. 

But it has meant shared humanity and kindness and shared growth. I'm grateful for that. 🦋🦉🌻🌷☀️

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!

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.