Choosing Life is Hard and Inconvenient {Part 3}

Choosing Life is Hard and Inconvenient {Part 2}

After I wrote the last post on choosing life, I left off with this question:

Since choosing life is hard and inconvenient, is it worth it?

My only frame of reference for this question is what I've personally experienced or experiences I've read about. Unfortunately, I read about these experiences daily because of the Facebook support groups I'm in, as well as articles that friend's post that I assume since they deem it important enough to pass along, it might be worth my attention.

I know I can choose to look the other way when stuff pops up in my newsfeed, and I did for a long time. Unless I was actively searching for stories of hope, I had turned off all notifications from any group that might make me have to contemplate hard stuff beyond what I was already dealing with. I tried to quickly scroll past any shared link that looked like it might touch on difficult illnesses or disabilities. I didn't need other people's stories. I was already living my own.

So in considering decisions to continue to choose life after birth and if it's worth it, my conclusion is...yes and no.

I include "no" because sometimes I just wish I didn't have to choose life. Sometimes it really doesn't seem worth it. I worry that my choosing life for my son has caused him to experience more suffering than what what a typical kid would experience, and I feel guilt about that. Also, as I've mentioned in the previous posts, I selfishly don't like to be inconvenienced and taking care of Austin is hard, and exhausting, and emotionally draining, etc. In fact, I thought about having a nice pity party here and listing all the things I don't like about caring for a medically complex child (I could call it "47 Things I Don't Like About Caring For A Medically Complex Child", and it would be republished by Huffington Post), but if you follow his Facebook page, you probably know the gist of what those things are.

When Austin turned 3 years old, I finally felt able to write the following. It probably best sums up the "yes" answer to the "worth it" question:

Dear Austin, 

Today as we celebrate your 3rd birthday, I marvel at what you have overcome to still be with us. I celebrate your beautiful little soul that seems to love and need us. I thank you for being such a fighter so that we can get to know you. And I thank you for being patient as we try to figure out your needs and explore ways to help you be all that God intended you to be. I still pray earnestly that your body will continue to heal and will provide you with more opportunities to communicate, move and interact with your surroundings and the people who love you. I thank God that he gave you to us to be a part of our family. We would not have been complete without you. 

I love you,
Your Mommy.

Even though it only took me one emotional night on the couch to decide not to terminate my pregnancy and choose life, it actually took me three years to get to the point where I could see past my grief and see the value in choosing life beyond his birth. I finally realized that just like I had a soul connection with him when he was in the womb when I could sense and feel his aliveness, I still had a soul connection with him after he was born, and probably even more so then because I could see and experience his aliveness, if only in his eyes. His body may be broken and often seem useless. I may at times hate his body because I have to exert extra energy to care for it, but I now recognize that his soul is what I've actually been entrusted with, and for that reason alone, as long as his soul seems content and happy to be here with us, I have to choose life.

I say "as long as" because there may be a point where his body has to work too hard to sustain his life, that choosing life means choosing interventions that induce or prolong suffering beyond what is typical, or that choosing life becomes a selfish act on our part while he is in the midst of despair with little hope of being happy and content again. I just pray that we will know, if and when the time comes, the point at which we need to back away and let him be.

God help me.

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"There are children who rely on the help of others to survive their entire life," Lee observes. "Many people think it is better for them to go to heaven as quickly as possible, because life on earth would be too difficult for them. But God sent them to the earth with disabilities. They're not the unnecessary ones in the world. God sent them to earth with a purpose. Disabled children teach many people, change many people and help people reflect upon themselves, which is why they are the educators of society." Pastor Lee Jong-Rak, The Drop Box

Choosing Life is Hard and Inconvenient {Part 2}

Choosing Life is Hard and Inconvenient {Part 1}

I feel like I can't just leave things like that. Confessing to the world that I am against killing unborn babies? Check. Peace. But admitting I could be on the fence about when to use medical advances to intervene and extend life? Uncheck. Still an unsettled question in my mind. So the next step in the conversation for me is:

As a Christian, when can/should we step away and not play God and allow a person to pass away when their body/brain cannot support life naturally?  (And don't get me wrong. I am all against suffering and totally for using medical interventions to alleviate any pain that accompanies passing.)

After Austin was born and we realized he was breathing on his own, that God did not take him, I sort of naively assumed we had been through the hardest part of the whole choosing life decision. I didn't realize that we would be making choices for him that involved other medical interventions besides being on a ventilator. I didn't realize that choosing life for him now that he was born meant a feeding tube.

I remember the doctors telling us that he would be physically disabled and mentally impaired, but I don't remember them saying that he might not be able to eat on his own and what the consequences would be if that happened. I remember that we discussed with the NICU doctor before he was born that if he breathed on his own, we would like him to be taken care of like any other baby born with problems. However, exactly how that would look was never discussed. And I think that while we were praying for a miracle, we took the ultrasound doctor's word that he wouldn't be born alive, so why discuss what we didn't expect to happen?

It's difficult to look back now and wonder how we got through the pregnancy without discussing all these possibilities, but really, how would we know unless the doctors had laid it all out? Facebook was pretty new to me at the time so I wasn't aware of any "special needs parent" groups where you can go now and ask all these questions. So all my information just came from googling the internet and reading the few blogs of other special needs parents of kids with diagnoses different than my son's. So if I did come across the information, I certainly didn't internalize it. I really trusted we would be taken care of by the doctors, that they would help us along.

So while the first few days after Austin was born are pretty vague in my mind due to my own need for surgery and resulting pain killers, i.e. morphine (another story to be documented in the future), I do remember that the NICU doctor, even after promising during our pre-birth meeting to care for him if he breathed, did not follow through with her promise and relentlessly argued and tried to persuade us to take him home and let him die. (I assume now, she meant on hospice, but I don't ever remember discussing hospice care.)

We had no idea just how actively she was trying to make this happen. For example, instead of being taken to the NICU, he was put in a crib next to me on room air in my hospital room in the orthopedic wing, not even close to being monitored and cared for with all of his potential problems from his brain malformation. So even though he was constantly moaning, and didn't seem to be getting deep breaths, we just assumed he was ok enough to be there. I mean, the doctor and nurses knew what they were doing, right? Who were we to question his care?

One day, I remember my husband telling me that he went to ask about Austin's yellow color, and that someone in the NICU pointed to the bilirubin blanket and said, "You can put that on him if you want." On another day, I remember my husband asking if they were going to feed Austin, and they said something like, "Oh, you want to feed him?" Then they came in with an orange Nasogastric (NG) tube, threaded it through his nose into his stomach and poured in some formula. I don't remember ever asking or being told why they didn't try a bottle first.

Finally, after 3-4 days of almost non-existent care, a NICU nurse came to my exhausted husband in private and told him that if he wanted to give Austin a chance at life, he needed to get him out of this hospital and take him to Seattle Children's. She said the NICU doc was known for getting on a pedestal about how kids like Austin born with disabilities should not continue to live because they are a burden on society.

It became apparent we were not going to get support from this hospital if we were going to choose life for Austin. And because we are Christians, choosing life for our son felt right so I let my husband do what he needed to do to get Austin to a safe place. And really, in my mind, morally, I did not believe we had any other option.

My husband had no idea how bad things were until we tried to transfer him to the children's hospital on the 5th day. The NICU doc refused to say it was medically necessary so my husband had to sign off on the orders promising to pay for the life flight. Then, once the team arrived to transport Austin, they found out that basic blood work and procedures that all babies have done had not been done for my son. They had to delay the flight until all those things could be checked off the list. They also discovered that his O2's were low, and that he should have been on oxygen for the past 5 days since his breathing was shallow. I remember my husband telling me all this later when I wasn't so out of it, and I can still feel the anger I felt towards this doctor for failing to do as she promised.

But almost five years later, and after all I've been through with Austin since then, I can now look back to those days with some understanding (not sure if it's forgiveness or not) in my heart for that NICU doctor. I can now see where she was coming from, how hard and inconvenient choosing life beyond just giving birth can be. So perhaps she actually harbored more compassion in her heart for parents like us than I gave her credit for. Perhaps she could see into our future and anticipate how challenging things would be or the emotional stress we would endure. Or perhaps she just didn't want her taxpayer dollars going towards supporting kids like Austin.

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And of course, I can't just end it here either. Just because I'm being honest and admitting choosing life is hard and inconvenient, and that in a way, I wish I hadn't had the choice, I don't want you to think I have any regrets about choosing life for our son Austin at this point. So the next part in this conversation should and will be:

Since choosing life is hard and inconvenient, is it worth it?

Choosing Life is Hard and Inconvenient {Part 3}

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}