“Juli, are you sure you don’t want to wait until Chris gets here from the other hospital?”
“No, my friend is here. She has cared for children with rare genetic disease. She is here with me. He is caring for his patients, so I will tell him everything later. Go ahead. What is the report?”
And oh so slowly and so delicately, my favorite pediatric neurologist on the entire planet began to tell me that Robert’s seizures would continue…and…that the brain surgery had kept them away for a little while…but…there was no way of controlling them completely because they were now stemming from the base of his brain…and…then spreading to both brain hemispheres. That is a long, run-on sentence for a good reason. I need you to feel the weight of that moment. It was a blur of words, but with the cutting specificity that comes with that kind of medical report. There was no other way to say it. It was clear to me that I needed to hear his doctor and, at the same time, take it all in and feel that crushing news.
I must have looked as if I didn’t get it because my caring friend asked me if I understood what Robert’s doctor was saying.
“Yes, I do understand. I get it completely.”
But did I? Could I really? Because, in my mind, I was trying to figure out how I was going to be able to tell Chris that Robert would not be “growing out’’ of this. Robert would not live for long with us because the brain surgery only stopped some seizures, but these generalized, all encompassing, full-body seizures had found a new place from which to emerge and travel—like a web across his brain that no one could stop.
Robert’s doctor let me sit in this revelation for a few minutes. My friend did the same and sat with me quietly, still confirming I had heard correctly. I am sure she was concerned that I would fall apart after the doctor left the room, but I didn’t have time to fall apart, yet. I needed to get in the car and call Chris.
Even before I did that, I needed to call another dear girlfriend—one who shared my belief in the sustaining power of music—and ask if she could start preparing songs for Robert’s forthcoming funeral. That service would not happen until many years later but, at that moment, it felt like it would happen that same week.
Rain was falling in torrents as I began driving on the highway to get back home. And the tears…oh, the tears of anguish that flooded me as I tried to talk to my girlfriend on the phone. I could barely breathe. I could barely think. I could barely see! The raindrops on the windshield and the teardrops running down my face seemed to mingle together into one big imaginary puddle at my feet. I do not know how I navigated the rain on the drive—a route that I knew so well. I shared the desired songs with my friend, and she understood.
Then I called Chris. I “cut to the chase” because I knew he would not need much explanation. And he did not. The minute I told him the seizures were starting mid brain, his tears began. We cried together as he explained more deeply what that would mean for the care of our baby boy. In 40 years of marriage, I have only heard Chris cry out loud like that two times. Both times involved Robert. It was unfathomable that my husband, a doctor, could not “fix” his child. It was heartbreaking to hear that depth of pain.
Tears. The deep ones are necessary. But so are the ones that come now in celebration and memory of Robert’s life. The tears must flow.
May they flow like rain for each of us as we navigate these roads.
Listening Library: Gratitude (Linda Adler, my dear friend)
“Blessed are you who weep now, for you shall laugh.” (Luke 6:21 ESV)
Send some rain, would You send some rain? 'Cause the earth is dry and needs to drink again And the sun is high and we are sinking in the shade
Would You send a cloud, thunder long and loud? Let the sky grow black and send some mercy down Surely You can see that we are thirsty and afraid
But maybe not, not today Maybe You'll provide in other ways And if that's the case...
We'll give thanks to You with gratitude For lessons learned in how to thirst for You How to bless the very sun that warms our face If You never send us rain
Daily bread, give us daily bread Bless our bodies, keep our children fed Fill our cups, then fill them up again tonight
Wrap us up and warm us through Tucked away beneath our sturdy roofs Let us slumber safe from danger's view this time
Or maybe not, not today Maybe You'll provide in other ways And if that's the case...
We'll give thanks to You with gratitude A lesson learned to hunger after You That a starry sky offers a better view If no roof is overhead And if we never taste that bread
Oh, the differences that often are between Everything we want and what we really need
So grant us peace, Jesus, grant us peace Move our hearts to hear a single beat Between alibis and enemies tonight
Or maybe not, not today Peace might be another world away And if that's the case...
We'll give thanks to You with gratitude For lessons learned in how to trust in You That we are blessed beyond what we could ever dream In abundance or in need
And if You never grant us peace...
But, Jesus, would You please.
Songwriters: Nichole Nordeman
Gratitude lyrics © Ariose Music Group Inc.