Difficult
As I reflect on his last days, I can’t help but be grateful that they are over. No one, less a ten-year-old, should ever suffer the way he did. While DIPG was taking the last bit of his physical abilities, we all were battling with fear in terrible, tangible ways.
May 13, 2016
I cannot think of a better word to describe this part of Josiah’s journey than difficult. He is struggling with all aspects of health: physical, emotional and spiritual. There are good moments… like 10 minutes ago where he acted like he was asleep to suddenly scream when I got close to his face. Well, good moments for him… he had a good laugh by my reaction (I bet you would have too if you had seen me jump).
I have no desire to memorialize his physical descent. But it has been a couple of weeks and I am sure you want to know how he is doing. He can no longer walk or stand on his own. He wears a travel pillow to tilt his head up while spending all day in the hospital beds at our houses. He cannot adjust his body in bed so we often adjust him while he watches YouTube or Netflix. He can barely open his mouth so eating and talking is extremely difficult. He had been biting his cheek in the middle of the night but is now on medication that helps that from happening… most of the time. He is also on medication for a double eye infection. Minus watery eyes, he is doing much better.
I was certainly on edge. It was probably good that Josiah scared the devil out of me that morning. Demons seemed to be having a hay day back then.
Hidden in the midst of the medical blog update were some of the worst moments of my life. I avoided going into detail because there was already too much reality and emotion at the time. Today I want to give a glimpse behind the curtain. Maybe through this peek behind the scenes, you may gain empathy to fill in the gaps of what people do not share.
Too many times, more than I am willing to count, I was awoken in the middle of the night by Josiah. What bothered me was not being woken from slumber but waking to the sound of him in excruciating pain. Being startled out of sleep is no joy. Hearing the faint noises of your son in pain is wretched. Rushing down the stairs hearing muffled screams and pitiful petitions is heartbreaking. Devastation is never knowing how long it took him to wake me from my peaceful sleep.
It only happened at night. I never witnessed how it happened. Perhaps his jaw, which was almost always locked shut, would loosen while he slept. Somehow in the small space in between his teeth, his cheek would fill the would void. Then like a trap set in the middle of the woods, his jaw would clench down on his cheek for some unknown, no good reason.
He couldn’t quite yell or scream while his clenched mouth was the source of his pain and problem. He could hardly move to make enough sounds to startle anyone. But through his teeth and locked jaw he made noises, I will never forget.
The first time I saw him like this I was helpless. It took me far too long to figure out what was wrong. Even when I finally saw the source of the problem, I could not figure out how to help him release his cheek. He was desperate and frustrated. I was desperate and frustrated. I tried to move his cheek and open his mouth with my hands but to no avail. After far too much time passed he was somehow able to relax, growing numb to the pain or an answer to many prayers, his cheek was released.
Consider what happens after you bite your lip or your cheek. You do it again and again and again, don’t you? Same for Josiah for many nights. I found a plastic knife I had from an old IKEA children’s utensil set. It had far more substance to it than a regular plastic knife. But obviously duller than a metal butter knife.
So I kept it in his room until he would need it.
Once he woke me, I would run in. I would try to calm him down. Then I quickly used one hand to open his bloody mouth and the other to slowly wedge the knife between his clenched teeth to free him from his nightly nemesis.
As time went by, it never seemed less painful, but we got used to the routine. It was just another insult he would endure as he struggled to survive. I could not keep him from the pain but only help him through it.
My mission as a parent had become managing his pain. I could not protect him. I could not keep these horrors from happening. I felt helpless to accomplish the baseline task of any parent ever, protect your child from harm.
But now I question that assumption. How much harm can we protect our loved ones from? How big a cushion can we create to keep them from the pains of life? We are only human and the dangers of the world are too great.
As a parent, I create boundaries of safe zones for my children. I communicate to them clearly and explain what they are there to accomplish. But as they grow older, they have more power to choose whether or not they want to live in those zones. The risks vary with the rewards and pains associated with the danger.
Ultimately we cannot build enough safe zones. We cannot construct enough cushions to keep our loved ones from harm. We must prepare our children for living in the consequences of their choices and the poor choices of others. And sometimes, far too often, there is pain for us all even when we “keep safe” and do things “right”.
No child deserves to bear the consequences of having a tumor grown on their brain stem. There is no amount of good nutrition or safe zones to protect them. So what does a parent do?
Love them in the pain. Share their tears. Pray to the One who has the power to do what you cannot do. Pray that He will step in and deliver. Trust He will even if He won’t.
Next week, I remember how He did not save my son. And I remember why my hope is still in Him.
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