Mat Kearney’s song Closer to Love has a line it in that I love because it so simple and accurate: “I guess we’re all one phone call from our knees.” In my work in the Emergency Department, the hardest days are those where I witness firsthand the aftermath of those fateful phone calls. I’m not so naive to think that some day that same call wouldn’t come my way.
During the month of May, I received an email and a text that brought me to my knees.
The first was an email from my father at the beginning of the month. He had a bit of a health scare that required an outpatient MRI. My ER nurse instantly went to worst case scenario that my father was dying. (I can be a biiiiiiiiit dramatic when it comes to the wellbeing of my family.) I dropped all my non-essential plans and decided to go home for the weekend. As I teasingly told him when I got home, simultaneously hugging and punching him, “there’s much easier ways to get me to come home.”
The pain of that uncertainty was horrible. I hated the helplessness of waiting in the uncertainty with him and my family. I hated that all my fix-it self could do was sit, pray, and hope. I’ve learned enough about illness and suffering in the world to pray for merely a clean state of health. I prayed more for a heart ready to receive whatever the result was. His MRI came back negative, thankfully. His health scare was just a scare. I can just hope my stubborn father tells me his health concerns as they develop in the future. (Nudge, nudge, wink, wink, Dad!)
However, I’m quite thankful for my dad’s little health scare because it prepared my heart for a text that has brought many of my friends to their knees and continues to keep us there as we keep vigil.
At the end of the May, I received a text from my dear college friend that mutual friend of ours were in the ICU with their 14-month old son who was having uncontrolled seizures. Our friends Maggie* and Jim* were out of town for her family member’s wedding. I had just seen my friend Maggie and her baby boy Colby* when I drove through their town on my way home for Easter. Jim was at work. Colby was his usually happy, quiet self. Maggie was doing very well. We had chatted about this wedding and how excited she was to get out of town with her little family. It was hard to imagine little Colby so sick he needed intensive care when the image in my head for their vacation was so peaceful.
The text said to sit, pray, and hope. Updates were going to be through the grapevine. Our friend had texted family only, her sister-in-law had texted my friend, and she had texted me. I knew she and her husband were likely overwhelmed with Colby’s needs and their other young son’s needs. The pain of their uncertainty was even more horrible. I hated the helplessness of just being able to sit in the uncertainty when I knew their little family hurting so far away. It was even more frustrating and painful to not even being able to visit or offer a word of consolation.
After a few days in Florida, Colby was in stable but critical condition. He needed to be intubated (have a breathing tube) because of the powerful medications he was being given to stop the seizures. Once he was started on this medication and many other anti-seizure medications, his seizures slowed. Maggie flew up with Colby in a med flight to my city (the nearest pediatric Trauma I hospital to their hometown) while Jim flew back with their other son.
Finally, I had my direct line of communication. Maggie texted me a day or so after they had landed, saying they were here and told the story. I admitted I already knew and was praying for Colby. Being a former inpatient/stepdown nurse, I knew critical care areas were scary and lonely places, so asked if she were in the mood for visitors. Thankfully, she was.
When I came to the pediatric intensive care unit (ICU) for the first time, my heart was racing. Colby was sick, but stable, she had texted me. I had said those words countless times to patient family members and friends. I had just never seen what sick but stable looks like on the other end of it.
When I arrived, Maggie and Jim appeared fairly at ease, which put me at ease. But that sweet, sweet boy, was attached to all kinds of tubes, wires, and monitors. His usually perfectly set hair was mangled around EEG probes watching his brain for seizure-like activity. He had a central line in his neck. A probe sat on his belly, monitoring his kidneys since all the drugs he was on could severely disrupt their usual functioning.
I was afraid to touch him, and with my time in critical care, I can navigate around a large amount of tubes in my sleep. But Maggie and Jim were used to the extraneous appendages, and they did little to stop them from cooing at their beloved little one. Maggie and Jim were so sweet to their boy. “You’d hate your hair right now,” she’d say. “We’re so proud of you,” he’d say. It was simultaneously heartwarming and heartbreaking to see my friend’s unconditional love persevere in a tumultuous time.
Maggie and Jim gave me updates on Colby without me asking. I didn’t ask specifics, mostly because I didn’t want to overwhelm them. Too, childhood seizures and pediatric critical care is not my forte. However, it was quite providential that every time I came to visit them in the ICU, a team was rounding. Too, the room had a smart board with Colby’s current vital trends, labs, and medications. I didn’t need to pester my friends with specifics; I had a board and updates from rounds.
More than anything, though, I wanted to know how Maggie and Jim were, but I knew the answer without asking: it’s tense, it’s scary, and I have no idea what’s going to happen.
Within a week, I had a pretty clear picture of what happened and was happening. Colby started having a tonic-clonic seizures, which irritated a segment of his brain, which started more seizures, and the vicious cycle continued for a little over 24 hours. The irritated area was healing, but he needed to be in a medical coma to heal. Several things that made me particularly worried: multiple anti-seizure medications including a powerful, old-school barbiturate called phenobarbital, a vasopressor (medication to help the heart pump) called epinephrine, and the teams consistently saying in one way or another, “he’s quite sick.”
Slowly, but surely, Colby started to heal. I was there the morning the ICU team decided Colby could be extubated. I was there when he had his first bath in weeks. I was there when Maggie and Colby got to go outside for the first time in weeks. I was there when Maggie learned to give a medication in a tube for the first time. These little accomplishments were always exciting, but they were also heart wrenching because either Maggie or Jim was not there, and the other one and I both knew Colby had been capable of so much more before all of this had started.
Whenever I wore my scrubs and hospital badge when I came in before work, I looked like I belonged there. Doctors and nurses talked to me without dumbing anything down if I asked, which was nice. But Colby never looked like he belonged. Something about him in a hospital always felt unnatural. I desperately just wanted to see him home, and I knew my friends wanted him there even more.
Throughout the whole ordeal, Maggie and Jim were the best sort of patient family you could want. They were kind even when they were frustrated. They asked questions that were relevant and showed they understood the gravity of what was happening. They were involved without being horribly overbearing.
But under the surface of calm, I knew they were both frustrated. Frustrated that their little boy was sick, frustrated they were away from their other child, frustrated their lives were disrupted in the worst of ways, and frustrated that they could do nothing else but sit and pray.
Colby’s ICU and eventual floor bed were in the hospital adjacent to mine, which ended up being quite convenient. I stopped in at least twice a week to visit. Sometimes I brought food like fruit and homemade banana muffins, sometimes I brought books, once I brought Chick-fil-a because I was secretly craving it myself, but mostly, I just brought myself.
Whenever I came, Maggie and Jim consistently would ask me about work, my family, and my summer plans. At first, I felt it was a bit odd, given the situation. However, as I visited more frequently, Colby slowly improved, and I understood the monotony of the hospital in a new way, I understood why Maggie and Jim desired so very much to hear about my life and discuss concrete events and people we knew. A concrete answer was a moment’s reprieve to the litany of questions they were undoubtably asking in their minds: When are we going home? When he is going to stop seizing? Is that twitch a seizure? Is this medication helping enough? Is he healing like they want him too? Is this ever going to get better? What is causing all of this?
The pain of uncertainty was palpable. Trusting things would get better was very difficult, especially the days in the ICU when Colby needed equipment outside his body to perform usual bodily functions and the day on the floor when nothing seemed to change.
I was frustrated too. Frustrated that despite all my knowledge I could do nothing else, frustrated that words of consolation would fall short, frustrated that they were all hurting and I could not heal them.
That’s what was the most frustrating: Despite all my training, knowledge, and skills, I could not heal someone I loved even more than my own patients.
I would have given an eyeball (and I really value my vision) to see Colby out of there sooner and see my friends have some relief! But I could do nothing but sit with them and pray for them.
Being a nurse for over 5 years now, I’ve finally come to a realization that my work does very little to heal anyone. Sure, sometimes I get to give adenosine for supraventricular tachycardia and see a very real change like so:
However, a majority of the time, I give a medication, I offer advice, I teach about various health topics, and I do not get to see the end result. It was one of the hardest adjustments from inpatient to ER nursing, but if I’m honest with myself, I was so burnt out as an inpatient nurse because I expected myself to be the one to heal people, not Jesus.
As much as we medical professionals can diagnosis, prescribe, perform surgery, teach, prognosticate, etc., it’s really up the Divine Physician how the body will respond. We can try to predict which end of a statistic a person will end up on, but sometimes it’s impossible to tell. I’ve seen both miraculous recoveries from people never expected to survive and horrible recoveries from people who were expected to do well. Some people smoke a pack of cigarettes a day and live in their 90s while others like Dr. Paul Kalanithi are diagnosed with lung cancer in their 30s without ever smoking.
We don’t heal people; Jesus does.
But that hidden expectation to be the one to heal (not a vessel for the Healer) never leaves, however much I give my work over to God.
So, what do I as a lowly ER nurse really do? As I said to my patient the other day, who I could not offer food to because she needed an abdominal CT scan, whom I could not offer warm blankets to because she had a fever and could not take tylenol nor ibuprofen, whom I could not give pain medications to because the doctor was stuck in the trauma room, “I’m pretty much useless to you.”
And that’s what I was to my friends: useless. I wasn’t the one teaching how to give a medication. I wasn’t the one fighting to let Colby off the floor. I wasn’t the one bathing him. I wasn’t the one extubating him. I was useless company.
I brought along muffins, fruit, books, Chick-fil-a, etc. because in some small way, I wanted to help, contribute, relieve them, console them, heal them. But as I spent more and more time with Colby, Maggie, and Jim, I realized being useless was probably the most useful thing I could do. I couldn’t be the cause any good, but I could keep vigil with them.
A beautiful passage in the memoir My Sisters the Saints by Colleen Carroll Campbell is a conversation between the author and her mother. Tucked away near the end of the novel, the author is facing the difficulty of infertility. It goes,
“I can accept the cross of never having children,” I told my mother once. “It’s the waiting, the not knowing, that’s driving me crazy.”
“The waiting is the cross,” she answered.
After picking up this books years ago, I’d begun to think of Jesus’ condition of discipleship (“Whoever wishes to come after me must deny himself, take up his cross, and follow me.) in Matthew 16:24 in a whole new light. I’ve really meditated on what it means to journey with the cross and stand at the foot of the cross, even more so than I have written about.
Jesus must have felt great relief having his mother, beloved disciple John, and other friends at the foot of his cross, standing and sitting by Him in His darkest hour. That’s the image brought to mind when I think of sitting by Colby’s bedside, waiting, hoping, and praying next to Maggie. It was definitely a dark hour, but eventually Colby went home. It was such a happy day, and I honestly thought the worst was behind us.
But what about after Christ died? What about when the cross has become too much to bear and defeated us? What about when we have no spirit left and are spiritually dead like Christ after 3 hours on His cross? What about then?
Then, we continue to keep vigil. However, that vigil becomes more and more lonely.
The cross of Colby’s new onset seizures and my friends’ undoubtable anguish defeated me a couple days ago. That’s when I found out that results of Colby’s genetic testing: mitochondrial depletion syndrome. The results of rare genetic mutation, Colby started having seizures as a direct result of his mitochondria not reproducing in his cells. His cells die prematurely because they cannot feed themselves. Maggie and Jim were told by the genetics teams that was only a matter of time before his brain and liver started to fail. Colby was given a prognosis of 2 years.
The results were devastating. I got the text, started crying in a Goodwill changing room, and fell to the floor in disbelief and grief.
We are truly, as Mat Kearney sings, one phone call, one text, one new devastating piece of information away from our knees.
Mitochondrial depletion syndrome is the same subset of rare genetic disease that Charlie Gard died of in the U.K. After I posted my opinions about the heart-wrenching court verdict about removing Charlie’s ventilation because curative treatment was futile on my personal Facebook page, a friend of mine posted: “I know you think it’s a service to let this child die, but I don’t buy into that. What if it was your son, would you honestly be this compliant to just stop treatment?”
Well, he’s not my son, but Colby is someone I deeply care about. My heart breaks knowing that someday my dear friends Maggie and Jim are going to come to the point where medicine can do nothing more to cure or Colby.
“What if it was your son, would you honestly be this compliant to just stop treatment?” Her words are like daggers, poking me over and over again. Am I being complaint by admitting my own helplessness in the situation? Am I being complaint just collapsing in grief? Am I being complaint when I ought to be called to action.
No. I’m just being honest with reality and understand the devastation of the disease along with the limitations of modern medicine. I cannot do anything. I cannot say anything. I cannot research new treatments or petition cutting-edge physicians. The available literature is devastating.
I can only pray and continue to keep vigil, no matter how difficult that is. And it’s been really hard to keep vigil and remain open to hope. Hard, difficult, etc. does not do the rollercoaster of emotions justice. Logically, I know God is near, that He is close to the brokenhearted and that He will not let my spirit be completely crushed (Psalm 34:19). However, my heart does not feel that way right now, and it’s very hard to walk forward with faith right now.
I sincerely believe as a cornerstone of my faith this truth that St. Augustine first wrote and that is repeated in the Catechism:
“For almighty God. . ., because he is supremely good, would never allow any evil whatsoever to exist in his works if he were not so all-powerful and good as to cause good to emerge from evil itself.” (CCC 311)
But I am so tempted to write off the whole situation as bad. I cannot imagine how any sort of good can come from an innocent child dying before he can even go to school. A child who can never grow up to fulfill his God-given potential. Where, O God WHERE, can you create some good in this. Because I don’t see how that can happen right now.
But allowing ourselves to doubt, truly doubt, is a hallmark of keeping vigil. I think of all the disciples and friends of Jesus keeping vigil after Jesus died on the cross. None of the expected the Resurrection. As Ven. Fulton Sheen writes in Life of Christ:
“The most astounding fact about this spectacle of vigilance over the dead was that the enemies of Christ expected the Resurrection, but His friends did not.”
“Mary Magdalene, Mary, the mother of James, and Salome bought spices so that they might go and anoint him,” writes Mark (16:1). These women thought he was going to remain dead and needed to be buried properly. Peter needed to see the tomb for himself (John 20:6). Someone else’s testimony was not enough for him. Thomas insisted on putting his hands in Jesus’s resurrected side (John 20:25). All of his friends’ testimony was not enough for him.
While Jesus’ friends brought burial spices or were otherwise convinced He was dead, the Jews insisted the Romans guard a dead body. Truly, as Sheen wrote, “the enemies of Christ expected the Resurrection, but His friends did not.”
As believers, we are sometimes the most doubting of the bunch. I think it is because we often write our own ideal ending to a situation and are not open to what Jesus has in store. At least, that’s what I’m struggling with right now.
My ideal ending since learning of the genetic diagnosis and poor prognosis is finding a dead person in the canonization process like Bl. Pier Giorgio Frassati or Bl. Chiara Corbella Petrillo who need another miracle to become a saint, Maggie and Jim getting all of us to pray to said blessed person of their choice, Colby being miraculously healed, and we all get a happy ending in Rome at said person’s canonization Mass and Colby running around, completely happy and healthy.
Jesus, that sounds pretty great to me. Can that be the ending, please, for the love of all things holy, PLEASE!?
But as my beloved Fr. Henri Nouwen writes in With Open Hands,
“Being so eager to arrange our own future, we of little faith close ourselves off from what is coming. We have no patience with the unspecified promises and we have no trust in the unseen situations which the future has in store. Therefore, when we pray with little faith, we pray without hope.”
This is me. I have no patience for non-concrete answers right now. I have no trust in the future that God will create more good out of this evil. I ought to be the most hopeful person because I call myself a Christian, but I’m so often one of little faith.
Even when it’s something simple like a co-worker looking into switching their holiday with me, I often have little faith and no hope! Jesus, how on heaven and earth am I going to have the faith to trust that You can work good in all of this!? I’m NOT capable of that!
But Lord knows I’m of little faith. He knew His friends and disciples were of little faith. If He had never been buried with over 24 hours in a tomb, would His miraculous Resurrection been so miraculous? If things do not unravel the ways He deems most good, would the miracle in store for all of us who love Colby dearly be so miraculous?
Colby will die, as we all do. It will be before he can ever go to kindergarten, before he ever learns to drive, before he ever leaves home and can be on his own, baring the healing miracle that I desperately desire for him.
But that doesn’t mean a miracle cannot take place.
The lines in the Catechism about the healing of the sick are some of the most moving words I have ever read. But one particular line stands out (emphasis added):
“Moved by so much suffering Christ not only allows himself to be touched by the sick, but he makes their miseries his own: “He took our infirmities and bore our diseases.” But he did not heal all the sick. His healings were signs of the coming of the Kingdom of God. They announced a more radical healing: the victory over sin and death through his Passover. On the cross Christ took upon himself the whole weight of evil and took away the “sin of the world,”of which illness is only a consequence. By his passion and death on the cross Christ has given a new meaning to suffering: it can henceforth configure us to him and unite us with his redemptive Passion.” (CCC 1505)
I think the most radical healing, the most radical miracle that can come out of all of this (and could still include that brilliant radical miracle I mentioned above, Father) is for our hearts to grow closer to God despite the agony and to remain open to hope.
That’s what keeping vigil is all about. Keeping vigil means keeping our hearts open to hope.
Hope is something I am still very much trying grasp right now. I like the imagery of Henri Nouwen in The Wounded Healer,
“Building a vocation on the expectations of concrete results, however conceived, is like building a house on sand instead of on solid rock, and even takes away the ability to accept successes as free gifts. Hope prevents us from clinging to what we have.”
Hope is clinging to Jesus, Our Rock, not the little speckles of sand that so easily slip through our fingers.
When we cling to sand, we make God out to be a vending machine. I do this all the time. My prayer can sometimes be so short-sighted that I pray for concrete things to complex situations. And when the concrete thing I’m seeking does not come and the uncertainty continues, I can often despair. But hope is quite simple: hope is doubting that I all that I know, all the I have, all that I can imagine is all that exists and clinging to the Rock of Jesus. In simpler words, hope is leaving a healthy amount of doubt in my own thinking and therefore allowing Jesus who is beyond all knowledge to do as He wills.
Keeping vigil, then, means keeping our hearts open to hope, and therefore open to doubting our own thinking.
The disciples gave up doubting. They saw Jesus was dead, and that was it. Jesus was dead. Period. They did not doubt they could be wrong. Therefore, they did not hope in a Resurrection even though Christ had mentioned multiple times the importance of a death and resurrection. They were beyond doubt. They despaired, and they could not open their eyes or hearts to anything beyond their own thinking.
The Jews, however, were open to doubt. They wanted Roman guards outside the tomb in case Jesus was telling the truth. Jesus’ disciples were not open to the idea that Jesus could have spoken the truth when He said He would rise.
But it can be so horribly difficult to remain open to doubt, to remain open to hope. I am struggling to seeing beyond Colby’s life-limiting diagnosis and be open to the hope and good that will come.
I think to think of this vigil, of the disciple’s Holy Saturday, as my time working night shift times infinity.
Working night shift was difficult. After working it for over two years, I cannot come up with a better word than that horribly inadequate descriptor of difficult. Challenging? Demanding? Tiring? Hard? Doesn’t cover it.
How do you describe fighting your mind and body’s every natural tendency? How do you describe the challenge of forcing yourself to sleep during the day, through noises like lawn mowers and phone calls and construction and whatever other garbage goes on during the day? How do you describe the tension of demands between your body and your mind, not knowing when to sleep, not being able to sleep even when you’re dead tired, having your mind run at million miles an hour when your body is exhausted, feeling like a semi-functional zombie at all hours of your life? How do you describe the absolute tiredness, the nauseous tiredness, of staying up late at night on your little amount of inadequate sleep? How do you describe how hard it is to explain to friends and family why yes, I’m off at 10am tomorrow, but no, I cannot make it to your event because I’ll be sleeping?
No word nor explanation covers it. Night shift is just inexplicably difficult. Out of all the difficulties of night shift, the worst part by far is waiting for the sun to rise. It’s certifiable torture. You know it’s coming, but in a nauseous, barely awake, zombie state, sometimes you doubt it will. In the darkest, longest, most tired, most dragging moments of night shift, I legitimately thought the sun might not rise. It didn’t matter that it had always risen every other day; I legitimately was convinced it might not.
Yet, somehow, no matter how awful I felt and how convinced I was that this one time the sun was not going to rise, it always did.
And thus it is on our Holy Saturday nights when we are so exhausted that we have barely any energy to keep our hearts and minds even open to doubting our own concrete thinking: the sun will rise, and God will prevail.
As Sheen beautifully writes in Life of Christ:
The law He gave was clear: life is a struggle; unless there is a Cross in our lives, there will never be an empty tomb; unless there is the crown of thorns, there will never be the halo of light; unless there is a Good Friday, there will never be an Easter Sunday.”
How we pass from Good Friday to Easter Sunday is through Holy Saturday. Amid any struggle will come a dark moment (or two, or three, or many, many more), a moment of possible despair, and it is our call as Christians to doubt our own concrete circumstances whether it is the situation, possible outcomes, our own attitude, and hope in Our Savior.
Sometimes the situation changes in a way we could not have predicted. For Colby, I thought it was a life-long struggle with epilepsy. It changed to mitochondrial depletion syndrome and became infinitely worse. Sometimes the problem resolves. I’m undoubtedly rooting for this option! Sometimes we find interior strength we didn’t know we could muster. I’m not sure where that inner strength is going to come from, but I know God can work with even the smallest crack of hope in my heart.
No matter what, the Son will rise, and God will prevail.
I felt useless sitting at Colby’s bedside, back in early to mid June, talking with Maggie about inconsequential events. Yet, these events were tiny but concrete examples of God prevailing in my life. We’d re-visit people and topics we had discussed as time went on. Situations had changed. Some things had improved. I discovered myself changing.
I slowly came to realize these discussions about people we know and events in our lives were not just a moment’s reprieve to the litany of questions they were undoubtably asking in their minds; more importantly, they were concrete examples of Our Savior working in our lives. They were small signs of hope, encouraging us to place greater trust in Him even when it was more and more tempting to despair and not be open to the doubt that something could change.
I’m no longer at Colby’s bedside. He’s home. Maggie, Jim, and all of us who love them are coming to terms with this diagnosis in private. I just still cannot shake the memory of him playing with puzzles with me on that fateful day before they left for Florida, perfectly normal. Him with tubes is now going to be the new normal.
I’m bracing myself for darkness, praying to God I can find hope in all that will come. I’m quite thankful that I’ve been re-reading two of Nouwen’s books: With Open Hands and Reaching Out: The Three Movements of the Spiritual Life. In both, he describes prayer in one way or another as waiting in patient expectation. I’m re-learning how to pray at a time where it feels impossible.
This is what Nouwen’s friend wrote of hope, which he quotes in Reaching Out:
“Learning to weep, learning to keep vigil, learning to wait for the dawn. Perhaps this is what it means to be human.”
Tragedy is the human condition. It’s just been a very long time since it’s hit me like this. A lot of loved ones died in my youth. I’ve been so blessed with no major deaths since the death of my classmates in high school. All those losses fueled my desire to be a compassionate nurse. I’ve seen the sun rise, and I know from my own personal history that good can come of the most difficult and painful losses.
But I’ve forgotten how much loss and impending loss hurts. I’ve forgotten how hard it is to believe God is good. I’ve forgotten how hard it is to hope.
Night shift was always the most difficult between the hours of 3am to 5am. That’s when the nausea set in. That’s when I couldn’t keep my eyes straight. That’s when I didn’t think I could make it to the dawn.
But that’s when Jesus walked on water and met the disciples in the storm (Matthew 14:22-33). That’s when I believe Jesus resurrected. And in our darkest moments is when we will find the light.
That is the Christian life: having the faith, hope, and trust that dawn will come, no matter how dark the night is.
It is not the beginning nor end but the middle where we face the most interior difficulty. And right now, all of us who love Colby are keeping vigil. The nausea is setting in. Our eyes are having a hard time keeping straight on Christ. We’ve reached a dark hour, and we are desperately waiting for the dawn.
So we pray:
Out of the depths I call to you, LORD;
Lord, hear my cry!
May your ears be attentive
to my cry for mercy.
If you, LORD, keep account of sins,
Lord, who can stand?
But with you is forgiveness
and so you are revered.
I wait for the LORD,
my soul waits
and I hope for his word.
My soul looks for the Lord
more than sentinels for daybreak.
More than sentinels for daybreak,
let Israel hope in the LORD,
For with the LORD is mercy,
with him is plenteous redemption,
And he will redeem Israel
from all its sins.
Lord, help us keep vigil and let our hearts not fall asleep to Your love and grace.
* Name altered to protect privacy. Please respect Maggie and Jim’s privacy during this difficult time, but please also pray for them, Colby, and all who love them. We’re hurting right now.