Tuesday, October 27, 2015

Choosing Life is Hard and Inconvenient {Part 3}

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

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