Last week I took Kiki and Judah to Disneyland for a little vacation from all the stress. It felt a bit odd, leaving our baby so far away when he could die any second, for something as frivolous as entertainment. So. Glad. We. Did. Something changed in my perspective as we raced around from ride to ride, enjoying the amazing weather, defeating Zerg, encountering pirates, flying through space. My boy Judah is barely 4 years old, and he has dabbled in the whole roller coaster thing, but he is a hesitant child by nature, and while he desperately wants to be as bold and adventurous as the Valkyrie Kiki, he has not yet reached that level. We did convince him to ride Space Mountain for the first time. Kiki and Judah sat in the front row, and I sat right behind them, somewhat terrified that my skinny little boy would fly out of his space ship halfway through the ride, so I held on tight to his shirt. Kiki the Great LOVES adventures of any kind, and fearlessly faced the dark with a broad smile on her face, all her teeth showing, arms waving in the air, laughing and screaming, she was so happy NOT knowing what would happen next. She welcomes fear because she knows that, as she has said before, “when you are scared, you have the most fun!” All those dark surprises just intesify her joy and contentment with life because she is 100% certain that in the end, all will be well. And then she can’t wait for the next terrifying ride, and seeks it out until she finds it. There is no fear when one faces darkness with this kind of certainty.
With Judah, it was a somewhat different story. When the ride stopped, Judah had NOT flown out of his space ship and he was smiling, but he was not eager to ride again. He said he thought he’d wait a while, maybe until he was bigger, to ride again. However, he was determined to ride again.
It occurred to me that I have been like Judah over the past 6 weeks. We have been on this utterly frighting roller coaster. Some days we are soaring with joy, so elated at tiny bits of great news. Other days, we are terrified, watching him die, watching him survive by some miracle of God’s grace, giving him one more day, to the astonishment of all the specialists. Through it all, I am okay with my boy dying and suffering because I know that in the end, whatever happens, there is no tragedy when an innocent is given more life, or runs into the arms of Jesus. I am happy with every extra day we get with him, but I have not been considering the joy in the darkness or the unexpected, drastic twists and turns. I am tired of being hauled up hills and sent plunging down – how far? It is too dark to tell. You just have to wait until you (hopefully) reach the bottom. I would really rather not be experiencing this right now, but like Judah, I am not scrambling off. It is odd to realize that unlike other parents, we actually have the option to GET OFF this ride. We can actually get up and walk away. We can, as one person suggested to me a few weeks ago, “give him back and ask for a different, healthy one.” But like Judah, we are committed to riding this out, this baby is our son, not legally yet, but to us, a piece of paper is not that important. Our boy is our boy, with or without a finalized adoption.
The change in perspective has been this: I have made a conscious choice to be content with all of this, and to have joy in this life we are living as a family. I get it that it is okay to feel sad. To feel sad is not to be any less joyful. To be sad is not to be malcontent. Joy and contentment are a choice, a matter of believing that these trials are GOOD, for the sake of joy every single day until joy is a habit. We have known this for ages. Aristotle wrote extensively on habituation in our actions for the sake of virtue to the end of eudemonia, as did the biblical authors. James famously wrote, “Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing.” When we consider something, we think about it from all angles, develop beliefs beyond our feelings, and look at the whole picture, both in the short-term and the long-term. James et alia remind us of this choice to actually consider something beyond our immediate feelings, which are not under our control, and delve into the world of beliefs, which are under our control, and they clarify the long-term result, which is habitual joy and contentment in all circumstances. It is a life where one literally lacks nothing. I imagine these biblical authors were referring to their own ancient beliefs regarding experiences of God, had by their forefathers. For example, King David wrote, “The Lord is my shepherd, I lack nothing.” I could go on and on with examples of the Christian mandate to choose to live life such that we choose beliefs leading to joy and contentment, as the evidence is overwhelming. Furthermore, those who wrote these things were engaged in something like a ride on an amazing, dark roller coaster. The didn’t know what would come around the next bend. Many of them were facing execution for what they chose to believe, which certainly must have made them feel bad at that moment, but it made their beliefs leading to joy and contentment stronger. They were like Kiki, facing the roller coaster with the most amazing faith that in the end, this terrifying ride will have been so worth it, that it OUGHT to be enjoyed, even while fear is felt. Furthermore, like Kiki, they begged for more terrifying roller coaster trials right away, knowing that the more trials one endures, the more joy and contentment becomes a habit. It becomes easy and habitual, like brushing one’s teeth, to live a joyful, contented life. However, this life is unlikely available to those who choose not to get on the roller coaster. And if one persists in waiting until one is “bigger,” like Judah, the life of joy and contentment takes longer to achieve.
And so, what is up with the little Mr. Bug? The court hearing to remove life support has been called off. What? Why? We don’t fully understand why this decision was made. Perhaps it was our meeting with the PICU doctor when we made it clear that we were no longer in support of that decision. Perhaps it was that his little lungs actually healed of most, if not all, of the holes the ventilator had made. Perhaps it was the fact that literally none of the doctors wanted to go to court and testify in person the reasoning behind removing life support. Perhaps there was dissent in the PICU specialist ranks. Whatever the reason, we thought it more than a coincidence that the day after we made our mind known (let him keep on fighting or let him die without adding any new care, but don’t remove him from life support if it is no longer harming him) we received a call indicating that life support removal was no longer on the table. Phew!
Not only that, in the ensuing days, his lungs became well enough so that he could begin the process of weaning him off the ventilator. Now, this is a long, tedious, horrible process for everyone involved. There is a “make or break it” mentality right now, and they are being very aggressive about this. I think they get it that Mr. Bug is a fighter, has been his entire life, and NOW is the time to get him better if at all possible. They have used all their medical powers to heal him, and it did not work, so now they are using his own little body as a weapon, and it has to either work or die. Either way, things are progressing. The ventilator is at the lowest setting in 6 weeks. Now, this does not mean a whole lot since he is still requiring an insane amount of support. It is as if he is held up by an enormous rope, and a few tiny fibers have been sliced so far. There is a very, very long way to go. At any point along the way, he can crash, and it is quite possible that they will just let him go rather than pulling him out of the crash. I think everyone agrees on that. But so far he is tolerating the reductions in the ventilator very well!
Please keep praying for him! He needs to go so far to get out of this mess he is in! He has been so sick for so long, it might be easy to forget about our pleas to the Father for his complete healing, but please don’t forget! That he is still alive is NOT normal for the circumstances he is in, and even though we ride this crazy roller coaster, and will continue to do so for many, many months, if he survives, he needs daily prayer from everyone who has even a tiny bit of care for him. He needs a year-long prayer plan from EVERYONE!!! This is not instant gratification, nor is it daily good news. Sometimes it is terrible news, and sometimes we, as his parents, doubt. We are relying on the faithfulness of the saints to remind us every single day that we need to make joy and contentment a habit, and part of that is hope in miracles!
Lest I forget, thank you all for your love! We are overwhelmed.
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