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.

------

"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

A Public Thank You Note

I felt the onslaught of distressing emotions coming over me so I hurriedly excused myself. I quickly made my way to my hotel room before I ugly cried in front of everyone. A mix of exhaustion, fear, and feelings of uselessness overwhelmed me again, and I don't remember how, but my sister-in-law noticed or was made aware of my quick escape and came knocking on my door. With apprehension and mistrust, I called out to her to come in.

In my mind, my sister-in-law and I were more acquaintances than friends or family. I didn't feel like we had much in common, and had decided ahead of time we probably wouldn't or couldn't be close friends. I excel at making snap judgements like that.

For example, my sister-in-law has incredible style and always looks put together compared to my own disheveled, frumpy look. My sister-in-law has amazingly smooth hair compared to my own unruly, puffy mess. My sister-in-law looks athletic, thin, and tall compared to my own short, squatty stature.  My sister-in-law feels comfortable in heels where I prefer comfort, period. My sister-in-law has a confident, welcoming smile where my smile is often offered along with a fear of encouraging a relationship I don't have an extrovert's energy for.

My sister-in-law has a gift of public speaking; she can speak almost off the cuff, coherently and with authority, in front of large audiences without seeming to need to refer to notes compared to my own emotionally choked, public speaking attempts that force me to have to read what I want to say. My sister-in-law has the gift of hospitality; she can easily welcome strangers into her home for a meal or a place to stay compared to my own selfish desire for privacy and fears of being inconvenienced. My sister-in-law has been called to women's ministry and leadership compared to my own not being sure of what my calling might be and desire, more often than not, to hide behind the scenes.

So as my sister-in-law came through the door, I knew she came not only as a family member or friend, but in the capacity of women's minister with an offer to council and pray with me in my distress. However, my apprehension and mistrust came from feeling like my sister-in-law could not possibly minister to me because my sister-in-law has not had to endure my challenging life experiences. In all my comparisons, I also considered (unfairly) that my sister-in-law's life trials have been easier than mine so I braced myself to feel no comfort whatsoever from her words. How could my sister-in-law possibly understand what I was going through when she had never walked in my shoes?

But my sister-in-law did minister to me. And I know she did it even though she was tired and emotionally spent from the work of the week, too. She entered my room with humility and compassion; she brought encouragement and comfort. She may not have walked in my shoes, but I know she tries to walk daily in the Word, something I have trouble remembering to do and could do better to follow her example. My sister-in-law brought words of Truth that did not need to be learned from life experiences.

That day I felt more than just being my sister-in-law's acquaintance. I felt my sister-in-law's friendship, and more importantly like I had a real sister, a family member, and a mentor in Christ.

Thank you for taking time for me, Mindy. I obviously haven't forgotten. And sorry I'm not good at saying these things in person and instead wrote it publicly. As my brother, your husband, seems to say a lot, "It's easier to just do it now, and ask forgiveness later." (Or something like that!)

P.S. Mindy has her own blog where she writes her thoughts occasionally (armslinkingarms.wordpress.com), but I would say her real gifts involve teaching, encouraging, and proclaiming scripture to women either one-on-one or in a public speaking format.

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.

------

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}

The Woman and the Tissue Box {Choosing Life: Chapter 3}

July 6, 2010

Facebook status, July 6th, 2010: “George Patrick lassos stork!"

Excitedly she pulled the glass door open to the women's clinic, breaking the seal between the hallway and waiting room creating a cool whoosh of air in her face from the air conditioning inside. She had brought her husband and two little boys, ages 8 and 11 for her first prenatal care appointment of her third pregnancy, the one where she fills out all the paperwork and agrees to a payment plan, the one where she pees in a cup and gets blood work done to officially confirm the pregnancy, and the one where they would get to hear the heartbeat for the first time!

When the nurse called her name, she followed her down the hallway to the exam room, alone at first. Her husband stayed with the boys in the waiting room. She planned to have them all come back once they got to the fun heartbeat part. No need to freak the little boys out with the peeing and exam part!

The nurse asked a few questions and took her blood pressure and then left her to undress and put on a gown. Once she had the breezy little gown on, she hopped up on the exam table and waited. Her nurse-midwife, the same gal that had delivered both of the other children, knocked quietly to see if she was ready and came in. They went through the routine of discussing her health and pregnancy history, she answered lots of questions and got an exam. Based on her answers to some of the questions, it was guessed that she was 10-11 weeks along. The nurse midwife asked if she wanted to go ahead and hear the heartbeat before they called the boys back to the room, and she said, "yes!"

As the nurse-midwife positioned and repositioned the fetal Doppler around her abdomen but couldn't seem to locate the baby's heartbeat, she began to feel more and more apprehensive. But her nurse-midwife brushed off any concerns and said after she came back from getting her blood work done, she would send her to get a fetal ultrasound.

She got dressed and walked in a daze back to the waiting room where her eyes met her husband's surprised look since he had expected to be called back with the kids to hear the heartbeat. She briefly filled him in on the plan and left them quickly to go to the Laboratory Department for the blood work.

She felt the panic and emotions welling up inside her. She sat down in a row of chairs off to the side out of the way, hoping to get control of herself. But she couldn't stop the flow of tears. She worried about all the things that could have gone wrong, and thought how funny that she could be so attached and so emotional over a 10-11 week old barely developed baby the size of a kidney bean.

As she sat alone in the waiting room of the lab, another woman across from her noticed her distress and without any words, quietly got up and brought her a box of tissues and then went to sit back down. She could barely see the woman through her tears and would not recognize her today if she tried, but she gave her a quiet thank you and an attempt at a smile. The fact that it felt like someone cared helped her finally get control of herself and continue through the motions of getting the blood work done and going back to the clinic where her family waited. She has never forgotten that tiny gesture of kindness.

Eventually she and her husband were ushered into another exam room. They left the boys just outside the room sitting in chairs in the hallway with threats to behave. After getting undressed again, she and her husband held their breath as the ultrasound technician lubed up the wand preparing for the up close and personal peek inside.

Immediately, the image of the baby popped up on the screen along with the unmistaken sound and picture of a beating heart. The baby was alive! He or she must have just been hiding. They both smiled and exhaled sighs and words of relief. Nothing seemed to have come from all her apprehension. The ultrasound technician pushed a button and printed out a tiny picture of a little monkey looking bean. She got dressed again, and she and her husband proudly went out to the hallway to show the boys.

{Choosing Life: Chapter 4}