As I endlessly walked laps around the second floor of the children’s hospital, my mind was spinning out of control. With each step I pounded out my anxiety, fear and pain. My heart was so incredibly heavy. I wrapped both hands tightly around my coffee cup, breathing in the warmth and feeling the steam on my face, my heart pleading for some of that goodness to seep into my soul. I was broken, withered and exhausted. The circles I walked were as dizzying as the jumbled thoughts spinning through my mind.
I was hanging on by a thread, clinging to my tightly kept schedule with the guy at the coffee cart in the lobby. Hot coffee starting around 4 am, and then iced at 7, hot around 10, iced at 1… and so on, throughout the long days. When the weekend came and the coffee cart wasn’t there I could barely function without this routine that marked the passing of time. I felt like a very unwilling passenger on a roller coaster and as the ride dipped into yet another valley I could feel hopelessness taking root inside me. I was on the verge of tears at any moment and this was not at all like me.
I felt so completely helpless watching our 8-year-old son fighting so bravely day in, and day out but still slowly losing the battle for his life. Connor had spent most of the last eight months cycling in and out of the critical care unit of the hospital, just down the hall from my personal racetrack. Life had become an endless saga of hospital admissions interspersed with short stays at home. Every time the phone rang we’d all hold our breath hoping it was not yet another test result that would send us back. Each admission brought with it almost constant discomfort and little to no sleep from the side effects of the medications he was on. He was miserable and I followed suit.
Throughout his life it always seemed like there were new treatments to try and things we could do to give him a better quality of life, but now even the treatments were making things worse and his overall condition was worsening rapidly. I felt helpless. I couldn’t promise him any more that things would get better. My role now was simply being there to hold him as he struggled through the long days and nights. I snuggled in his bed with him, reading books or watching the same DVD over and over and over. I tried to alleviate some of his anxiety by empowering him to do things for himself instead of always having things done “to him”. I tried to advocate with the medical staff to do something, anything, to manage his symptoms. I grieved with him as he lost more and more. I grieved with him when he could no longer eat, walk, stand up, or even sit up on his own. I did all of this every single day, but my seemingly strong appearance belied what was happening within: My soul was dying. My spirit lost. My heart shattered.
I felt like I had lost control of absolutely everything in our lives and felt helpless trying to help our boy. It hurt so deeply. After all, aren’t Moms and Dads supposed to help? Aren’t we the ones our kids are supposed to come to, to “make it all better?” My emotional state was rising and falling along with Connor’s. If he was doing ok, I was doing ok. If he had a better day, so did I. If his days were worse, so were mine. My mental and emotional state was rapidly spiraling downward along with his declining health.
As I circled the second floor clutching my cup of coffee, my heart hopeless and my head hazy, I had my epiphany. It was so incredibly clear, when everything else wasn’t. I heard the lyrics of a song in my head…
“I will lift my eyes, in the darkest night
For I know my Savior lives
And I will walk with you
Knowing You’ll see me through
And sing the songs You give”
The words to this song, by Chris Tomlin, burned into my soul. The “dark nights” unfortunately are part of life for all of us, living in the broken world we do, and our dark night was currently incredibly overwhelming. As the song played in my head, I clung to this phrase, “I will walk with you, knowing You’ll see me through and sing the songs You give.” I realized then, that while I could not control what was happening, or how rapidly things were progressing for our son, I could focus myself on my relationship with a God who loves me and rely on Him for the strength and stability I needed to cope with everything that was happening. I couldn’t change the song I was given to sing but I could change HOW I was singing it. I couldn’t control anything about our situation, but I could control HOW I was responding to it. I found that focusing on what I could do instead of what I couldn’t do, gave me renewed strength and hope.
Despite Connor’s worsening condition I was able to think more clearly. I was able to work with my husband and Connor’s medical team to make important decisions. What I needed more than anything during this time was to feel like I could do something and realizing that I could was incredibly empowering.
A few short months later we took Connor home for the last time. He lived only four more days and that time with him at home was so precious. When Connor died a part of my heart died too, but I did not die. For a long time I lived by seconds, minutes and hours, but I continued to sing. The new perspective I gained from my epiphany was a seed of hope planted in my heart that was growing strong.
Six years later I can look back and see how what I learned through all of those “dark nights” helps me to face the “dark nights” that are still present in our lives. I remember I’m never alone. I remember that I have a God who has walked with me and seen me through. I am so thankful for the gift of this epiphany and the empowerment it has given me.
{Your Thoughts}