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.