Choosing Life Is Hard And Inconvenient {Part 1}

Social media is interesting because sometimes it's not just entertaining, but it forces you to be exposed to and face some hard things in life whether you were looking to or not.

Yesterday, I was forced to confront (in my mind) two issues, slightly related, and now I feel compelled to unload my thoughts about them, once and for all, damned the consequences. I worry about not pleasing people with my words. I worry about offending someone. And I worry that admitting my own desires makes me look foolish. I'd prefer not to talk about either of these stories, but I can't seem to rest or have peace until I do. At least I hope it brings rest and peace. Anyway, here it goes:

Choosing life is hard and inconvenient no matter what age the person is, born or unborn, but our culture, medical advances and technology allows/forces us to have to play God all the time.

When I was 20 weeks pregnant with Austin, I was forced to make a choice about his life. Do we give him the opportunity to live as long as he can, or do we decide for him that his life is not worth living, that his life would be too inconvenient for us to adapt to, that life would be too hard to accommodate him.

I remember sitting with my husband in the obstetrician's office, the only guy in town who specialized in detailed ultrasounds and complicated pregnancies, and receiving the news that our baby was "incompatible with life" and would either die before he was born, or die within minutes, hours, or days of being born which would probably be true if we did not have the medical advances and technology that we have today.

I was devastated while very human thoughts of "how do I fix/avoid/get out of this" entered my head. The doctor went on to suggest that we terminate the pregnancy and said that he would perform the "procedure". I actually don't ever remember him using the word "abortion". He was very matter of fact and technical. I tried to listen as best I could while trying not to be distracted by all the photos of his own smiling, healthy kids and family he had up on the wall behind him.

(I now know four years later after being a part of several special needs and medically complex support groups, that the "incompatible with life" and "you should terminate" speech is the standard spiel doctors seem to give every pregnant woman if they see any kind of blip or abnormality in the ultrasound. It is a dime a dozen speech, and I should never have felt like I was the only one to ever have heard it.)

I knew what "terminate" meant. And, at first I thought, Yes, we have a way out. But for some reason, I went on to ask the doctor how he would go about terminating the pregnancy. So while I could feel my very alive baby flipping around and kicking me, he described what he would do to kill him. Halfway through, I couldn't take hearing any more. I grabbed a handful of tissues since I was crying, we made apologetic excuses, and practically ran out of the office. We made the decision that giving our baby the opportunity for life was worth the risk of inconveniencing our own, that our life path would forever be changed, it could/would be hard, but somehow, we would overcome and reap whatever benefits placing value on life incurred. We only placed the tiny caveat that if he did not breathe on his own, we would allow him to pass. If he breathed on his own, we would use whatever medical advances and technology was available to allow him a chance at life.

So yesterday, I was very much overcome with those same intense emotions because the Planned Parenthood hearing was apparently going on and news about it kept popping up in my Facebook newsfeed. I made the mistake of clicking on a couple of the posts, and reading some of what both sides were saying. Over the past year, as the exposé videos trickled out, I could not bring myself to watch any of them because the very thought of tearing apart a tiny human just makes me physically sick. I had done the best I could to avoid thinking about this appalling daily act of murder that humanity performs everyday, and I just couldn't let my mind go there. I feel like there is nothing I can do to stop it, so I'd prefer to not think about it. So my posting this today, is my one tiny act of proclaiming abortion's injustice.

As these stories were pushing all the buttons of my emotions, another post came up from a page I had recently begun following. The page was set up by a young mother with a similar story to my own (as I said, these stories are a dime a dozen), where the mother was given the same speech as mentioned above, and had decided to birth the baby anyway. Where her story differs was that instead of seeming to pursue life after the baby was born and breathing, she seemed to have already made concrete plans to let her pass with hospice or palliative care (I'm not sure of the difference). Her baby had to be induced early, and they took her home the next day without any stay in the NICU. At home, she attempted and was successful at nursing the baby, but the baby began having problems so they went to stay at the local hospice in order to determine what to do next.

I was torn between conflicting emotions. First, I was frustrated that she seemed to be misleading all the hundreds of followers reading her page including mom's with children with a similar diagnosis, all praying for her, for a miracle, and offering support if the baby lived through the birth. And she got her miracle, the baby lived! That is what she seemed to be praying and hoping for on the support page. So my thought was the baby should have been taken to the NICU to see what needed to be done to help her thrive. So all I could think was the very condemning and human thought that since she couldn't bring herself to abort the baby, she is still looking for a way out of this very hard and inconvenient life that could be in her future. And then I thought, That's not fair! I want a way out too! (While this is probably not what she is thinking, it's unfortunately what I'm thinking as a bystander. But I'm not walking specifically in her shoes so I have to trust she's making the best decisions under her circumstances.)

So the other human emotion that began to creep in was envy. What?! I seem to be taking a stand for life in this post, and I feel envious that she might take the way out that we didn't have the guts or feel ethically we could take?! But think about it, killing a baby before he is born is murder, but allowing the baby to pass after he is born because of failure to thrive is just the way life is. If he can't eat, he can't eat. It was the perfect way out. (I'll admit I had a big ugly cry while I had these seemingly conflicting thoughts.)

Except it isn't the perfect way out and the decision isn't black and white in today's world. We have so many options now to prolong and extend life because of medical advances, feeding tubes, shunts, stints, vents, etc. How do we decide when to use those measures? Where do we draw the line? Is it only in times of anticipated complete recovery to an independent adult life? Or is it also when sustaining that life is inconvenient and hard for those taking care of that person and hard on the person the measures are taken for?

I was then overcome with these emotions related to decisions people make regarding choosing life after the child is born, especially in the case of severe or potential severe disability or medical complications. Medical advances have taken the once "incompatible with life" statement and made life compatible. A shunt here, a feeding tube there, and a child (or adult for that matter) that wouldn't live past a week, can live an undeterminable amount of years.

So my heart breaks for her that she might believe she can't live life with a disabled child. And my heart breaks for me that sometimes I don't want to live a life with a disabled child either. So while it's easy to talk about choosing life on moral or ethical grounds (in my opinion looking through the lens of Christianity, not killing an unborn child seems fairly black and white in most cases), in reality the consequences of choosing life will be hard and inconvenient and life altering for everyone connected.

I wish we didn't have the technology that forces us to have to make life vs. death decisions. But since we do, how do we support those who do choose life?

Choosing Life is Hard and Inconvenient {Part 2}

Sometimes Social Media is My Life Line

I’ll admit it. As a mom to a medically complex/special needs child, I use social media as a life line, and (ahem) I overshare. I’m not ashamed of it because many times, it has saved my son's life...well...at least my sanity.

For example, at the end of February 2015, we were on our way to Texas with our son Austin for a Selective Percutaneous Myofascial Lengthening (SPML, say that five times) surgery in Galveston. After an eight hour drive from Arizona along I-10 through perfectly nice weather, we ended up in Van Horn, TX for the night. However, upon waking we found we would be driving through one of Texas’ freak winter storms for most of the day when we thought we had only nine or so hours left to get to Galveston according to Google Maps.

I was sitting in the middle row middle seat of our mini van next to my son’s car seat so I could periodically suction his secretions. I had a clear view out the front windshield of a gray, snowy, sleety, and cold highway. I started to panic a little as I realized we had stopped carrying winter gear in our car after we moved to Arizona.

My husband wasn’t helping my state of mind. He kept pointing out stalled vehicles, overturned trucks, and commenting that he kept feeling the car lose traction. We were only going 45 miles an hour and could barely see a few car lengths ahead. I kept my eyes peeled for tail lights in front of us. I also looked up the weather map on my phone to see how much longer we might be driving in this. Yikes!

I put out an APB on my Facebook status:

“We are traveling in the winter storm in Texas on I-10. We are supposed to be in Galveston tonight for evaluation tomorrow and surgery on Wednesday. I’m feeling super nervous because the map says we are driving through rain, sleet and ice for the next 200+ miles. The windshield keeps trying to ice up. We have already passed several recent wrecks and vehicles stranded on side of the road. There is ice on the road. We are driving slow.”

Immediately, comments loaded with prayers and concern were posted. And while comforted by the prayers, I was also comforted by the fact that even if we ended up in an icy ditch, friends out there sort of knew where we were.

Needless to say, we made it to Galveston safely, Austin had his surgery, and I stayed with him when he was admitted to the hospital for two days afterwards. As a mom to a kid whose been in the hospital a few times, I have learned the art of keeping myself entertained. Social media. I depend on everyone else outside of those three walls and a curtain to entertain me. I report on what’s happening with my son, and I live vicariously through other’s posts.

After being discharged from the hospital we had to make that same trek home along I-10. The entire trip included 18 hours of driving. For some reason after 17 hours (not including the stop in Van Horn overnight again), I had a vision of my son’s feeding pump cord still plugged into the hospital room wall! I frantically started looking through his bags, and not finding it checked how much battery was left on the pump. It usually lasted only a couple days after a full charge because he is fed continuously for about 20 hours out of the day. It had one bar left.

My stomach sunk with the realization that until I could get the cord back or a replacement, I would have to bolus an ounce of liquid food into his g-tube every half hour for 20 hours out of 24 hours everyday until we got a cord (he can only tolerate about an ounce at a time without puking). And since I had never tested that way of feeding before, I assumed the worst and figured he wouldn’t tolerate it after a while and would be puking it up anyway. The early stages of panic began.

Then the light bulb came on in my head, and I thought, Facebook! I quickly posted an SOS in one of my special needs moms groups, not really expecting anything but commiserating comments. But, lo and behold within 15 minutes, another mom offered her extra pump cord if I could stop by and pick it up.

“Where!?” I posted, and she quickly replied with her address. I Google mapped it, and it was only 15 minutes off our current route home. Seriously, I kid you not. Son's life saved...sanity saved. It's all the same to me.