All is transient.

I like reading weblogs a lot. Personal weblogs of people I know especially, but if I stumble across a weblog written by someone I don't know and they're entertaining and engaging I probably end up following it. Since Essie's birth I've read blogs written by other preemie parents about their time in the NICU and coming home, and have found other blogs through those blogs.

There's one in particular that I've followed. I don't even recall how I found it. Probably when I was doing a search on various medical things I was worried about for Essie. It's a blog written by a 23 year old single mom whose daughter was diagnosed as having anencephaly at 19 weeks gestation.

Anencephaly is a devastating diagnosis because there's no good outcome. Basically it's when the skull hasn't formed properly, leaving the brain exposed and the amniotic fluid eats away a large portion of brain matter. Babies with this diagnosis obviously have no chance of survival and it's often recommended that the mother terminate the pregnancy as early as possible. If they don't terminate the baby remains alive, being attached to the mother as life support, and develops as normally as it can under the circumstances until birth, at which point it passes away.

Some parents make the latter decision, knowing that they'll have only minutes or possibly hours with their child. Many of these babies are stillborn. But still some parents choose to do this rather than abort early, and feel that even if it's harder on them, it's worth it somehow.

I have very little personal understanding of how to make that kind of decision, or what I would realistically choose in their position. But I found this blog written by this 23 year old mother who decided that she'd carry her daughter to term and say goodbye to her when she was born. She knew it wasn't a standard choice and fought tooth and nail with medical professionals to have her pregnancy and birth treated with the same dignity and respect as 'normal' pregnancies and births. She had no usual baby showers, collected nothing beyond some clothes for her daughter to wear when she was born. Her support system was at least fairly extensive as she is devoutly Christian and the choice to not abort was a natural one in her circle, but she still carried her child knowing the probable date of her death.

So then her daughter, Faith Hope, was born by c-section. And she lived for a few hours with no assistance beyond feeding and pain management. And then a few hours more, and then a few hours more. And kept on living. Soon her mother took her home to live out her remaining time there.

Faith lived for 93 days. During that time she cried, smiled, ate, made regular baby noises, demonstrated that she could hear sounds and feel pain, fulfilled all of the list of reflexes babies are supposed to present ... pretty much did everything babies with her condition aren't expected to do. Her mother posted many, many videos on the weblog demonstrating all of this, and apart from the bandage covering the top of her head and eyes she looked and responded much like a normal baby. That in itself was unusual since babies with anencephaly often have a startling, alien appearance especially around the face due to the eyes not having enough cranial support.

Trolls eventually discovered the site and began making comments, telling Myah (the mother) that she was raising a meat puppet, an empty doll with no feelings or sensations behind the random firings of what few neurons existed. They told her she'd have been better off if her baby had died or she'd aborted her as soon as she knew what was wrong. They tore her down for having feelings and love for her daughter. She quickly took comment capability off of her weblog and set up her email to be screened by another person so she'd never see those emails. In her position what else was she supposed to do? Say, "You're right," and leave her daughter out to die?

Faith had health problems mostly related to her breathing. She was on medications for it and also eventually ended up on a feeding tube. There's no question that she wasn't a 'normal' baby. Her mother celebrated her every minute alive and gave her all the love and affection any mother could. But over the last week Faith developed bleeding ulcers due to her feeding tube and one of her medications, and on the 23rd she died.

I visited the weblog not expecting this at all, as the last report had her feeling quite well. The illness came on quickly and she died just as quickly. I was shocked, and ended up pretty much bawling my face off as I read about it and watched some of the videos her mother posted to remember her as she'd been in the beginning.

I questioned myself a bit later. Why was I so affected by this? And after processing it a bit I realized that I was crying not so much for Faith, who was never expected to stay in the world very long and who passed away peacefully, but for her mother. Myah probably felt incredibly protective and defensive throughout Faith's life, knowing that many didn't approve of her decision in the first place, and had to feel that way on top of the overwhelming emotional tumult that comes with having a child no matter what.

I think of what I felt for Essie while she was in the NICU, instinctively wanting to make her pain go away and make it all better. How did Myah feel, knowing her daughter had such an extreme condition and yet lived and even thrived against those odds? As proud as I did? Prouder? Then she got to know the personality she saw in her little girl and loved her even more every day, still knowing they were on borrowed time. No matter what her medical condition this baby was her daughter and it's obvious she loved her more than anything in the world. Since Essie's birth I can relate to that feeling so closely, so viscerally, that it makes me choke up to even think of how she has to feel without her little girl.

Is Faith better off dead? Is Myah better off not having to care for a child who would have been severely retarded if she'd lived on, requiring complete physical care for the rest of her life? I know it all depends on point of view and we're not the ones who held her as she died a few days ago. But I also know that I had no actual idea of what I could feel for a child of my own before Essie, and there's a possibility that despite all her appearances of doing fabulously there are still things that can go wrong for her in the future as a result of being a preemie. What I can't imagine is a single thing that would make me feel like life would be better if Essie weren't in it.