Hey Jude—The View from Five Years Up the Mountain

Hello, my sweet boy. Tonight, I’m going to dinner with friends from church. We’ll dine at a nice downtown restaurant—Chuck’s Fish. I can see our party, thirty-something women, the day’s stress lines smoothed away with fresh applications of make-up, our hair glossy and styled…or at least shaken out of the typical scraggly ponytail, and our dresses…too flirtatious for Sunday School, but too nice for Target. To the other diners and our servers, we’ll look like a gaggle of moms, out for a much-needed night away from the husband and the kids.

While they won’t be wrong per say as we are all indeed moms, they will be mistaken for the cause for the occasion. Today marks what would have been the due date for one of the women in our group. She was due with twins who as I understand were conceived after a long and difficult battle and whose very conceptions were nothing shy of miraculous.

I say “as I understand” because I don’t know this mom, but I’ve walked if not in her shoes then down a similar path. I’m ashamed to admit that when I found out that she already had a daughter, a fraction of me was relieved, not because her daughter in makes up for the absences in her life, but because I know that having already had Lillianne when we lost you helped me cope; Lillianne was a reason to pick myself up and to be courageous, to get out of bed and face the day.

After I came home from the hospital, I remember wanting to clean the house, to undecorate from Christmas before your funeral. I didn’t care that it was December twenty-ninth or that the twelve days of Christmas actually starts after Christmas or that you’re supposed to keep your decorations up until the Feast of the Epiphany. I just wanted to get Christmas out. I’d ordered photos of you to be printed, so we could put them up at your funeral, the only birthday party you’d ever have, and at the house after the funeral, so the people who came to visit could see how beautiful you were.

That night, all of the lights were on in the house. Where the corridor spills into the den, I stopped, kneeled down very carefully—having just had a C-section, I couldn’t pick Lillianne up, and hugged your then eighteen-month-old sister and said, “You have no idea how much I’m counting on you right now.” In short, Lillianne was essential to my healing and to my strength after you died.


I soon considered myself fortunate…as fortunate as a mother who has lost a baby can, that you weren’t my first. In the pregnancy after loss support group I joined on Facebook, I soon lost count of the number of grieving and despairing mothers who’d lost their first baby, and many shared stories not only of their sorrow but also of their frustration over the “support” friends and family gave them.

For many women who lose a baby, well-intended yet unwitting friends and family say so many wrong things:

  • You’re young—you can always have another one.
  • There is always adoption. (Often said to those who battle to have babies with or without a miscarriage, stillbirth, or loss after birth. While yes, adoption is an amazing gift to give to a child who needs a loving home and to one’s self, it has nothing to do with the pain and loss of infertility or other loss.)
  • At least you weren’t that far along. (This is common with first trimester losses and is absurd. Early loss mothers often suffer their losses in silence. What is more, they, like the rest of us, never have a pregnancy afterward where they aren’t riddled with anxiety and fear.)
  • Thank goodness you already have other children. (Said in cases where people have other children, which…yes, thank God for my other child; however, Lillianne isn’t Jude, and he isn’t her. My heart has a special place that belongs only to Jude, and none of my babies, none before and none after, can fill that space. This is often hard for moms who are blessed enough to have rainbow babies, babies after loss, to cope with. Many pregnancy after loss moms report a mix of anguish and joy when they meet their rainbow, the realization that even though they have a beautiful, living, healthy baby to love and to celebrate, that baby will never be the baby or babies that they lost.)
  • Everything happens for a reason. (This can also be “It’s God’s plan.”)

In truth, I felt incredibly uncomfortable with the last reason because unlike some people, I do believe that our lives are purposeful. I love that we can sometimes and often find a greater purpose or sense in our chaotic world, a world where order is literally created from chaos down to the molecular level. We live in a divinely designed world, but grief and loss are painful and are terrible. It can be hard for many to wrap their heads around that those unpleasant things are also by design.

That said, while I believe that life is purposeful and that God indeed has a plan, and while I also believe that we can derive meaning and beauty from most anything, even the ugliest of things, I’ve come to realize that it’s never okay to remind someone who is aching with grief and sadness that “everything happens for a reason”. They will come to that when and if they are ready. Telling a grieving mother that her baby died for a reason or because God was trying to get her attention is like telling her that she got what was coming to her. It just creates pain and cognitive dissonance.


The other thing that people cannot understand is how a mother or father feels when they lose a baby or babies…at any age or stage. Most people are horrified, and they can’t imagine, especially if they are already parents. For most parents, losing one of their babies is a gut-wrenching fear, something they know that happens but that they believe will never happen to them, much like when we get into a car, we believe that we won’t be the one to get into the fender bender. That kind of ego is good. It gives us the confidence to brave the world on a daily basis, to put our children out there, to send them to school, to give them keys to a car at age sixteen. We know that school shootings happen and that foolhardy teens with no sense of danger get into fatal, high-speed car crashes every day, but we assume that won’t be our child. Most of us are lucky.

I remember one semester, perhaps the semester where I was expecting you, I was teaching a composition class at the University of South Alabama in the evening. One of my favorite things about evening classes is that I usually have more non-traditional students, students who have matured into adulthood enough to really value their educational experience, and by that I mean, to embrace what we’re doing in English composition (because it’s awesome).

That semester, I had a student. He was a tall, attractive young man in his mid-twenties who’d moved to Mobile from Florida. He wrote a paper about the frustrations of online dating. He was lonely but struggled to find a mate in the texting, Facebooking, hooking up culture of his Millennial peers. One evening as class wrapped up, he asked about feedback on his rough draft. In discussing the paper, he admitted he’d been in a long-term relationship prior to moving and that he’d almost become a father with his ex-girlfriend. He said that he and his girlfriend had become pregnant but didn’t realize it until they were fairly far along. They’d been happy once they realized they were expecting and quickly embraced the idea that they’d become parents together; however, somewhere between twenty and thirty weeks, they lost the baby.

He said he was sad, but he also said it was for the best. The relationship dissolved, so, how could it not be for the best? I expressed my sympathy, but at the same time, I agreed to myself that it must have been for the best. They were two unwed young people still trying to figure it out. Adding kids to that mix is like throwing a drowning man a cinderblock.

In hindsight, I wish I’d have been more sympathetic; I wish I’d realized that while he learned to live with his loss and to find a way to see the glass half full, there was a depth to his pain that scraped the bottom of the glass, a pain I couldn’t possibly have understood until I lost you

While that young man is probably married now with more children, but I’m sure he thinks about that baby, what they’d be like, how old they’d be…the same things I wonder about you.


Yesterday, I met a woman at my mother’s store who admitted she lost her son in his twenties. He was at work, and he and his best friend were simultaneously electrocuted. “He would be fifty-five now,” she said.

I have watched my best friend’s mother brush her hand across her son’s name on his headstone. He passed away twenty years ago when his sister, my best friend, and I were sixteen. I wept at your funeral when my best friend’s father collapsed into tears in a torrent of empathy and grief. I’ve seen a childhood friend’s mother post link after link and meme after meme to express a bottomless sorrow in the short year and a half after her youngest son passed away unexpectedly in his late twenties.

You, my Jude, will be five-years-old come December 26. In that time, I have started to climb the endless mountain of grief. I’m no longer in the pit of my despair.

I no longer feel threatened by the chasm of sorrow, the one that sucks a broken soul into it and takes their life in the way that the mother of the other man who was electrocuted grieved herself to death a few short months after her son died.

I no longer feel wounded, upset, hurt, and empty to see a pregnant woman or a woman with a new baby. That feeling faded after a couple of years. Now, I feel pure joy. I’m giddy for other people in their hope and in the blossoming of new life.

I’m no longer prone to lachrymose episodes at Target, in the car, on my pillow in the wee hours of the morning, in the shower, or any other place where the pain of reality capriciously strikes like a lightning bolt, where emptiness engulfs in a single gulp.

In fact, I no longer want people to pity me. I realize that sounds bizarre, but I like to be able to talk about you; however, I don’t need people to become moist and mournful when I mention you among my four children because I do have four children, and I am proud of all of you. I want to talk about all of you. It just so happens one of my babies is in heaven.

It is challenging to control the knee-jerk, “It’s okay,” in response to the sorrowful, “I’m so sorry,” that comes when I mention that I have an angel baby. It’s not okay. It will never be okay. It’s okay actually just means that I’m okay. While I’m only at about base camp one, I’m also not at the bottom of the mountain.


From my (almost) five-year vantage point, I can see down a ways, and because of those who have loved and lost and lived before me, I can see a ways up, too. For those who are trekking these sometimes lonely mountain trails with me, take comfort in knowing that you’re not alone. Even if you can’t see the people walking beside you, behind you, and ahead of you, they’re there. You’re with them at the store, in traffic, at the restaurant, at work. They just don’t know your story, and you don’t know theirs. It’s for this reason it’s not only important to be kind to others but also to yourself. I’ve found the more I share my story, the more and more people I see walking alongside me. I know the terrain gets rough here and there, and there will be times, especially on your birthday, little man, where I am weak, where I slip, stop, and weep. I’m able to pull myself back up, though, and keep walking because I’ve seen those ahead of me do it.

It’s in this way that our losses are beautiful. Like an invisible thread of angels, you, my son and those other children, connect us. Weaving illuminated strands in and out of one another, you are the tether that we hold onto, that flows through our hearts and souls, and that allows us to reach out, ahead, and backward to others who are in pain and to say, “Let me help you. I understand. It’s okay to hurt. Share your burden and come walk with me. We are all in this together.” And so on we go.


Thank you, my sweet boy, for being beautiful. I loved you before I met you. I loved you more when I met you, and just as with your sisters, my love for you grows with each passing day. Until we meet again, my little heart.

 

 

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June 13, The Day Your Dad Almost Died

Every day, you are guaranteed a sunrise and a sunset, but you are not guaranteed every day. Recently someone posted something to Facebook about the novelty of the daily sunrise and sunset noting that we get so many but stop to appreciate so few, and let’s be honest…the few we stop to appreciate, at least pursuant to my generation, are often appreciated for posterity. We stop and soak in the sunset over the beach, the forest, the desert, the lake, the pool, the mountain, the ice-cream cone, the top of our daughter’s pigtailed head, so we can take a picture and upload it to Instagram. Look at this moment that I captured without living in it.

It’s dusk right now, and I’ve missed the sunset. I unintentionally missed my daily moment to sit outside and to watch the sun wash the sky with fiery pink and orange, signaling the resignation of the day’s intense heat, as the orb itself vanishes behind the trees in its rote descent toward the nadir.

On Wednesday, June 12, I was only vaguely aware of the celestial display happening outside of Sean’s hospital room in the progressive care unit. A liter and a half of fluid had been aspirated off of his lungs, and he was enviably doped up on what the nurse downstairs described as “liquid Xanax”. It had been a half hour after his oncologist, Dr. Butler, and his nurse, Blair, left when Sean started to run fever. His mouth was so dry, they had to take it under his armpit to register it—102.1. His cheeks were mottled and his skin felt like it was boiling. Tylenol and fluid were ordered, and Sean settled down. Uneasy, I left my phone number with the nurse. “Call me if anything changes.”

His parents visited, and in the time between my return to the house and getting the children to bed and them coming back, I’d already made up my mind. I was going back to the hospital. I hastily packed the small suitcase with wheels, gears whirring in my head, words thumping against each other. I opened a blank Word document on my laptop and emptied everything, what was happening and what I sensed was coming, onto the page.

By the time I’d uploaded the story, Sean’s parents were home and in agreement that someone should stay with him. It was after ten, well after sunset, when I checked back in at the hospital for what would end up being a week-long stay.

I hadn’t planned to be awake before dawn on June 13, but at 4:30 that morning, Sean’s cheeks were once again mottled. The nurse gave him two Percocet and more fluids to lower his fever. His heart rate was in the 160s. They put him on oxygen, and a respiratory specialist was called in. At 5:54 AM, I fired off the first text to Dr. Butler.

At 5:57, a response. “Worried about fever…could be tumor or infection. Highly complex situation. Glad he did not go home. He is very, very sick, but I think you are aware of this. We are trying our best.”

5:58 AM: I know. I’ve been praying over him and you all as well.

At 5:59, I put my hands around Sean’s and pressed my cheek to them, praying. Outside, beams of white light glinted off the spire of a distant church, off the treetops, and off the little brick Forensics building across the street as the sun rose to claim the day. This is the day, this is the day, that the Lord has made….

I felt rueful. I did already know that my husband was “very, very sick”. I knew from the moment that we got the refractory ALK+ ALCL diagnosis on June 4 that time, however much of it there was, was an even more precious commodity, that statistics were no longer as friendly as they were with the advanced stage Hodgkin’s disease, that science simply had yet to unmask all nuances of this rare and aggressive cancer…to undress it and to understand it intimately enough to know how it might respond and to unearth what would tame it.

Still, I thought we’d have more time to at least try. Doctors came and went, attentive, lips pressed into thoughtful lines.

The lead internist comes in. I’m told he’ll be moved to the ICU but that the ICU team will come by first. They might have to intubate him, the way he’s breathing. The internist squeezes my shoulder, and pauses making long, meaningful eye contact. I follow her into the hallway. “Do I need to call his parents?”

“If they can come….”

“They can.”

“Yes. You need to call his parents.”

I nod and slide back into the room. Tremulous. My body betrays my deliberation as I shake. I pace the ancillary room behind the curtain, trying to stop the tremors. Tiny little earthquakes violate me from the inside out. I walk to the bed. “Hey,” the swells of fear break the dam, tears pool and my throat tightens, so my voice is thick. “I’m going to call your parents, okay?”

Sean’s voice cracks, “Am I dying?”

“No,” I lie dabbing the sleeves of my sweatshirt to my eyelids, soaking up the unshed tears. “Of course not. I’m just scared. The ICU is a little scary. They said they might have to intubate you, put you on a breathing tube, and it might upset your parents if they have to see you like that without seeing you here first. No big deal.” The aftershocks reverberate, but I’m no longer lachrymose.

I call my mom first. My parents will need to head to the house to watch the children because I knew that once I call my mother-in-law, she’ll be beside herself to come. I’m worried she’ll panic when I call, but after a brief exchange with my efficient mother, I touch my mother-in-law’s name on my iPhone, and the thing rings. She answers quickly.

“You need to come to the hospital.” I measuredly explain that Sean will be going to the ICU and that they might have to intubate him. They feel it’s best if you see him before if they have to do that as they said it can be upsetting to family. My parents are on the way to relieve them. She understands and doesn’t sound alarmed. She also doesn’t ask questions. Good.

The oncologists, the internists, and the infectious disease team are at a critical crossroads.

It is very likely that he has an infection, so, the oncologist who rounds explains, to start chemo with an infection could be fatal as the chemotherapy lowers cell counts significantly. However, to not start chemo could also be a mistake. If there is no infection, then the cancer is what’s making him sick, and without chemotherapy, he will only get worse.

I watch his chest muscles work furtively as he breathes. His oxygen saturation is good, but why he’s struggling to breathe is confusing. It’s suggested the problem could be related to his cardiac function. An echocardiogram is ordered, and I’m ravenous for more information, for answers, for action.

One of my best friends, a nurse, someone who happened to be there the night we lost Jude, comes to visit. We stand in the hallway, and her face reads like an open book. Her clear, beautiful skin is tight and her bright eyes are wide. She understands the situation, and I understand her. She has the same expression she had four years, five months, and thirteen days earlier on the night Jude left us. Later, she tells me, when she has patients who present like Sean, they either crash or they recover. “He won’t be able to breathe like that—using just his chest muscles—for much longer.”

I’m anxious and relieved when we’re transported into the ICU. In quiet moments I pray. I pray specifically for the doctors and their choices. I ask Sean’s friends from his Monday night men’s prayer group to pray the same thing and to spread the word to our friends to pray, to pray for God’s agents on this earth, the doctors, whose choices would directly affect Sean’s life.

We’re not in the ICU long when the oncology team comes in. “We could keep poking and prodding him,” the lead on the team says from the head of Sean’s bed, “but we don’t think we will find anything. We will go ahead and start chemotherapy today.”

December 31, 2014 was a bright, blue, beautiful day. Not a cloud in the sky. The high was about 55 degrees. We laid Jude to reset that day. Somewhere between the funeral parlor and sitting under a tent that crisp and chilly morning, the dove of peace dipped low in the sky and brushed against both Sean and me. It was an imperceptible moment, a passing from raw, scraped nerves to the understanding that we’d be okay. We weren’t sure how nor when nor why, but we both felt serenity.

It’s as if aloe has been smoothed over my burning fear. They’re starting chemo. Despite no medical knowledge whatsoever (I still say “boo-boo cream”), I know it’s the right choice. My bones stop shaking. All that stands in the way is the echocardiogram, one that after it’s conducted merits the ICU cardiologist to stop, turn to face me at the foot of Sean’s bed and say in his European accent, “I hate to be the bearer of bad news….”

Stop, I want to interrupt. I already know. There is no need for dramatic speeches, not now, not ever. Instead I stare up at him. Patient, unblinking. My mother in law’s form fills the doorway behind the doctors. “His life,” he pauses and holds up his finger, “is literally balancing on the tip of a pin. Any decision we make, even giving him a bag of fluid that he doesn’t need, could push him.” He gestured the pin tipping, the imaginary form on top, Sean’s life, toppling with it.

“I know,” I intone. “I understand. Thank you.”

I didn’t cry when they told me Jude had no heartbeat. In the flurry and fury of everything that happened that night and in the days after, I remember thinking when the doctor said there’s no heartbeat and my brain said to some part of me that could process information, “They are saying that your son has no heartbeat.” I thought very clearly, “What am I supposed to do? Am I supposed to burst into tears?” I searched myself for the appropriate emotional response. For any emotional response. I was aware of myself, sitting in the hospital bed, doing nothing.

Sean started to speak first, asking what to do. I knew there was a procedure, but I’d never given birth naturally to Lillianne, so I insisted we do an emergency Cesarean. My body, my brain, my mouth could respond to action, to hope, to a plan, so I insisted. Furiously. Immediately. Yes, cut me open, cut me now. Get him out now. Try to save him. Yes, I swear I just felt him move, right after I got back in bed. Yes. Now. And then those inner quakes started, and they were so violent, my teeth chattered so hard, that I can hardly believe my heart didn’t explode. I internalize everything, and when I can’t contain all of the things, I tremble and shake as my body betrays my will for control.

On this day, I also don’t cry after the doctor’s speech. I wonder if he thinks that’s weird. There will be time to cry later. Tears come when they want to, not when they “should”. I’ve already been shocked today. But at the same time, I already know that no matter what happens, we are doing the exact and only thing we can to save his life. The doctors have made a choice and are relinquishing control back to the higher power.

Chemotherapy starts. All there is now, I think, is to watch and wait. We’ve done everything we can. That night, I’m curled up like a faithful cat in the sleeper chair next to Sean’s bed, holding his hand, when his vitals settle. His heart rate drops to below 100. His oxygen stabilizes. Before we’d settled to sleep, I’d texted my friend who visited earlier, that I prayed I’d be able to send her a miracle text…that he was okay, stable, doing well. She said she hoped so, too. And in the early morning, after he was awake and the sun warmed the sky, and I knew he was okay, I did text her…just that. Miracles do happen. And this was one of those times.

Days later, a friend from church would share that she thinks that Sean had more prayers than a congregation on a Sunday morning that June 13, and I would read it to him, and he would cry, and I’d cry a little, too, because we’d both know it’s true, and we’d both know that those urgent words to God uttered, whispered, and thought in unison made a lifetime, whatever the duration of that life is meant to be, of difference.


PS: I love you, my sweet four-and-a-half-year-old little miracle son. We don’t know the duration of life. In a million years, I’d never have known you’d only live to be thirty-three weeks or that I’d never get to experience you outside of my own body during that time, but what a life force you are. What a presence you are. How dear you are to me, and, oh my sweet boy, I hope you know how much you’ve transformed our lives here. 

“The moment of the rose and the moment of the yew-tree are of equal duration.” –T.S. Eliot