Tuesday marked two months without my beautiful boy on this earth.
I’ve mostly avoided looking at my accounts of Tyler’s journey on CaringBridge, but I did go back and re-read the first CaringBridge post I titled “two months.” It was last November, two months into Tyler’s diagnosis and a time of intense physical and emotional struggle for him with his illness.
If my first month after losing Tyler was focused on absorbing the reality of the new void his death left in the universe, the second month seems to have had its own focus.
For some reason I can’t fathom, my mind is stuck back in the PICU during his last 7 weeks of life. I don’t even know how to describe it, but perhaps putting it in writing will help release some of the poison.
For the past several weeks, I’ve been having a delayed reaction to exactly how traumatic that time in the PICU was for us. When I look back, I am in awe not only that Ron and I were functional, but that we didn’t get sick, didn’t have any emotional collapses, and between us, never missed a day by his side. What we did then seems impossible to us now.
Tyler was so horrifically sick, both on the inside and outside. Except for the last couple days of his life, we wondered constantly if he was aware and suffering. For seven straight weeks, our hours and days were spent in the altered reality of the sensory overload of the PICU.
The lights glared incessantly, the machines loudly and relentlessly pounded out noise, his lines and tubes entangled us as we ducked under monitors to approach his bedside.
Mental and physical exhaustion was worsened by uncomfortable chairs, the lack of space and privacy, the constant urgent activity of staff, and the wails of grief, shouts of anger, and expressions of despair on the faces of those who had a child on the unit.
Even when we went back to the hotel or the St. Casimir apartment to sleep or take a break, we were in a constant state of vigilance – would the call come telling us to rush back to the hospital? An especially difficult aspect is that we had no sense of an end date to our ordeal – would it drag out for weeks, for months, for years?
One day at a time became one hour at a time. Every time we experienced the joy of hope, we were crushed by word of the next life-threatening crisis. I recall many days where I went hours without even moving from the chair by his bed – too afraid that if I went to the bathroom or left to eat, I would miss a doctor I needed to speak with, Tyler would need me, or something bad would happen.
My soul was assaulted by his near death experiences: the times we said goodbye, then found hope, then faced his death again. I believed in miracles, but didn’t know if Tyler would receive the ultimate miracle or not. I had to constantly balance the words of the medical experts about his prognosis against my faith and belief that God would heal him.
In the midst of it all, we just kept plugging along, being there with our son. Where else would we/could we be? Ron and I were often puzzled by people commenting that we must be so strong to hold up during this time. But what other option did we have? Our child desperately needed us to advocate for him. Besides, we had tremendous help from our relatives and friends, an incredible network of support, and a strong marriage.
Looking back on those seven weeks Ron and I went through with our son, I weep for the parents we were. Now, those expressions of surprise about our strength make sense. I have absolutely no human understanding how we kept standing through that time, other than being lifted by the prayers of others.
We had thousands of people around the globe that I know of – and I suspect it may have even been tens of thousands – praying for us during those seven weeks. I don’t recall once praying for strength; I simply had the faith God would supply all our needs. And He did! We were blessed with a God-given ability to bear our burden. God, and God alone, was the source of our strength.
Two months later, I find myself inexplicably reliving the trauma in my mind, but without the strength I had back then. Some aspects of my grief, I am learning how to navigate. I seem to be able to bring myself back to functionality despite simply horrible bouts of missing him, sorrow over losing his future, confusion over my current place in the world, and memories of his five months on the oncology ward.
But I can’t seem to get a handle on the flashbacks and nightmares of those last 49 days – the sights, the smells, the sounds, the fears. Why can’t I make peace with that experience? It all adds up to a very tricky part of my grief. I can only hope that with the distance of time, the feelings of panic will fade and I can go back to “normal” grieving.
I do know one aspect of the PICU I don’t really struggle with. That’s the question of why God would bring Tyler back to life by improving his lungs, only to allow his other organs to ultimately fail two weeks later.
God’s amazing interventions from the time Tyler entered the PICU to the time he died were so completely out of the realm of my normal experience, that it’s enough for me to have seen God act, both that night and on many other occasions where medically inexplicable things happened.
We can all speculate as to God’s reasons, and as humans, we can’t resist. While I don’t struggle with it, I do ponder it.
Maybe God knew Tyler was going to die on March 29th (the Bible says He knows the number of our days while we’re yet in the womb), but worked the miracles to show all those following Tyler’s story that He’s still active in our lives, that He hears our prayers, and that He’s powerful enough to heal.
Maybe God allowed it so that we could once more see Tyler’s beautiful eyes and absorb the peace in his expression. Maybe God wanted to extend Tyler’s life just long enough for someone who needed His touch to finally turn to Him.
Either of those reasons work for me, and I’m also fine if it’s neither of those things. You see, it doesn’t really matter. I trusted the Lord with my son at his birth, I trusted Him with my son during his life, and I trusted Him with my son at his death.
As I’ve said before, none of it changes who God is. It doesn’t change Him from loving to cruel, from close to distant, or in any other way. He cares for us, and He is in control.
Just as He did two months into Tyler’s illness, two months after Tyler’s death, God still frequently speaks to me, comforts me, and strengthens me through Christian music.
Given what the second month of grieving has tossed my way, I am especially drawn to Josh Wilson’s song, Before the Morning. The link to listen to the song is http://www.youtube.com/watch?v=mfWAG-bnttQ
Please listen to the song if you get the chance. And in answer to the song writer’s question, yes, I do dare to believe!
Do you wonder why you have to
feel the things that hurt you?
if there’s a God who loves you, where is He now?
Maybe there are things you can’t see,
and all those things are happening
to bring a better ending.
someday, somehow, you’ll see, you’ll see!
Would you dare, would you dare to believe
that you still have a reason to sing?
‘cause the pain that you’ve been feeling,
it can’t compare to the joy that’s coming!
So hold on, you got to wait for the light.
press on, and just fight the good fight!
because the pain you’ve been feeling,
it’s just the dark before the morning.
My friend, you know how this all ends.
You know where you’re going!
You just don’t know how you’ll get there, so say a prayer
And hold on, ‘cause there’s good for those who love God,
but life is not a snapshot!
it might take a little time,
but you’ll see the bigger picture.
Once you feel the weight of glory,
all your pain will fade to memory
once you feel the weight of glory,
all your pain will fade to memory
Would you dare, would you dare to believe
that you still got a reason to sing?
‘cause the pain that you’ve been feeling,
it can’t compare to the joy that’s coming!
Come on, you got to wait for the light.
press on, and just fight the good fight!
because the pain you’ve been feeling,
it’s just the hurt before the healing!
Oh the pain that you’ve been feeling,
it’s just the dark before the morning