Friday, April 17, 2020

Dreams and the Inevitability of Change

Abigail's funeral gown, our angel, our princess

I can hardly believe it's been a year since my enthusiastic Hermione-esque post about starting my Neuroscience program at BYU. So much has happened.

BOMBS AWAY! is published in paperback and as an ebook. No audiobook yet, but I hope my readers will forgive me for being slow on that front. We've had some unexpected financial reversals due to the very unexpected arrival of our daughter Abigail in the manner she chose to come to our family. 

Abigail was diagnosed at around 22 weeks gestation with amniotic band syndrome and acrania/anencephaly. This is a life-limiting condition, so we knew we weren't going to get to raise her and we didn't even know if we would get to meet her while she still breathed. Some babies die before they are born, with these conditions. Thankfully, miraculously, we did get to meet her and she breathed like a champ for nearly 24 hours (it was 22.5 hours officially). Her beautiful face, though interrupted with a facial cleft around her nose and mouth, was our joy to kiss and touch and see. 

She was completely unique. Her hands were each different. The left one was normal, and the right had a miniature pinky finger where it had been tied up by the amniotic bands that give the syndrome its name. Development was also hampered in her left foot, which we called her baby doll foot. It was so darling, still with five tiny toes. Her right foot was normal except for some syndactyly, a fancy word for webbing between two of the toes. My oldest brother actually has a similar effect on his right foot, same foot as Abigail's, but different toes. We have always called them "kissie toes" in our family. Abigail was born three weeks early by C-section, because her head was sewn into the placenta with the amniotic bands. Incredibly, she was a chubby, hardy baby girl, weighing 7 1/2 lbs. That's how much I weighed when I was born, too.

I am so thankful that I got to meet her, that I got to caress her sweet cheeks while singing her the Angel Friends lullaby my mother sang to me, and that I got to hold her hands and talk to her while she still breathed. We were able to have a beautiful funeral service for her the Saturday after her birth and passing, because coronavirus hadn't yet arrived in America in any large numbers. I am so thankful that my family were almost all able to travel from Arizona and southern Utah to help us celebrate her brief but impactful life.

Abigail Reileen is our first daughter and we will always cherish her and wish she could have stayed. Her body wasn't built for this world, but her spirit was tenacious and beautiful. She died in my arms in a way that echoed both my dreams and my nightmares. I know she is just where she was meant to be and that somehow this was her destiny. I am so grateful to be her mother forever. You can read more about my family's experiences with Abigail on our blog all about her:

Because we learned of Abigail's diagnosis in the middle of my first semester back on campus, I struggled a bit to stay focused on my schoolwork. I managed to get every assignment and test done, but it was far from my best work. I passed both classes, getting an A in Neurobiology and a C+ in General Chemistry 1. I deferred winter semester so we could focus on Abigail's birth and funeral. It was all planned by the time she was ready to arrive in late February 2020.

We had been home recovering from all of this for a few weeks when Covid-19, the coronavirus that halted the world, began to be a household name and suddenly closed all American schools. Because we already homeschool and my husband already works from home, our routine didn't change much at first. It felt like a moment of silence fitting for our beloved daughter.

Now, as government officials talk of gradually re-opening the economy, we see life around us starting to go on as normal (well, new normal). It's a strange feeling. We are grieving. My arms feel empty. But even we have plans for the future, plans with dates that are fast approaching.

I have a deadline to finish my work for Ensign Peak Academy, the private school where my oldest son has been completing eighth grade this year. I am starting to feel the push to hurry up and write the third installment of The Drats Universe, PREPARE TO BE REPAIRED! And my next class at BYU will go on, even though it will be taken online instead of on campus. I'll be taking the Neuroscience Advanced Writing course, reading tons of academic papers about neuroscience and writing my own. I'm looking forward to it and dreading it at the same time.

Change happens whether we are ready for it or not. It is inevitable. The most we can do is make plans and dreams and shoot for the stars. As writers, that's what we are best at. The biggest change in me since last year is that my perspective feels bigger. It's like someone lifted me up from the cracks in the mud and showed me how small my ant hill was. From my view above, I see just how big the yard is. I can't claim to see beyond the yard, but I am definitely not as worried about the ant hill as I used to be.

In my writing, this change has come through as a desire to write more than an entertaining story for middle grade readers. I still want it to be fun, but I also want it to be meaningful. I like to think that DRATS, FOILED AGAIN! and BOMBS AWAY! each had a thread of deeper meaning behind the entertaining tale of two twin brothers with opposite goals and a common enemy. But I'm not as content with just a thread of meaning now. I can't say for sure how this will change the tone and breadth of the third book, PREPARE TO BE REPAIRED. I only know that it will change them.

To my younger readers, I would say, keep on dreaming. Life will throw you some curve balls, for sure. But that is the stuff literary masterpieces are made of. Les Miserables was written on the battlefield over decades of a life lived, not just written about. And Jane Austen's many beloved stories were born out of her own experiences navigating a woman's world in late eighteenth century England.

If you don't live, you won't write anything worth reading.

I hope you do live, and live BIG. Make dreams worth pursuing. If the world ever comes crashing down around you, don't let it stop you for more than a minute. Share what you've felt, what you've come to know in your bones through the trial by fire. It will be worth it.

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