Disclaimer: These are snippets of my mixed-up memories as truly traumatic events unfolded. Quotes from different providers should not be taken out of context, as they are my memories, which have been shown (on more occasion than one) to not be entirely reliable. Furthermore, this story certainly does not reflect the exact words of real people verbatim.
This is my truth, our story, and Carter’s story:
I delivered Carter on a cold November day. He was born on the twenty-second, almost right on time at 39 weeks & 4 days gestation. Carter’s due date was only a few days away, on Thanksgiving. Jason and I were tired, but it was the happiest day of our lives. Our family of two had grown to a family of three; all seemed right with the world. “Everyone was healthy,” or so we thought.
If only I had known then what was to come. I would have savored our precious time with Carter in the postpartum room. I would have cherished every moment, like the way I held him for the first time or the way I would stay up late just watching his little chest rise and fall. I was a new parent and I had no idea what I was doing — but I knew I was happy, thankful, and hopeful for the future. I still had my innocence then.
In those days, I vaguely had an awareness of the fact that Carter was jaundiced but I did not realize that the kind he had was a different kind of jaundice (neonatal cholestasis & hyperbilirubinemia). I had heard from one of my friends that sunlight helps with jaundice so I resolved to sit by the window in order to help my baby boy with some natural Vitamin D. (This is true of the normal kind of jaundice which can also be treated with phototherapy but would not have helped in the case of Carter’s condition).
I opened the blinds and sat by the window so that the sun could shine on my sweet son’s face. I held him close for some skin-to-skin time. I looked out the window, excited for what the coming hours would bring, not knowing what terrible things lay ahead. We had been told earlier in the morning that we were finally being discharged and we would get to take our new baby boy home.
Carter was on his way home, just not to our house in Eagle.
The nurse entered the room and asked us in a serious voice,
“Has the doctor come and talked to you both yet?”
We looked at her in bewilderment, “No?”
Her eyes wide with terror, she rushed out the door as it slammed quickly behind her.
Little did we know our lives were about to change forever.
The phone rang in our room; Jason answered. The nurse reentered the room as he hung up. Jason looked at me and with confused, sad eyes he said to me the words that still haunt me to this very day,
“That was the doctor. She said something is wrong with Carter’s bloodwork and they are going to take him to the NICU.”
In that moment, I was more than a deer in the headlights — I was a deer hit by a truck. I lay there cold on the road, almost dead but not quite. My heart was bleeding out as the quiet sounds of the truck’s engine muffled to a complete silence. When the truck hit me like a ton of bricks, all my hopes and dreams came crashing down. In a matter of seconds, my life had been ripped away from my me and the threat of death with its cold sting swallowed my dreams.
I thought, How can it be?
How could my perfect baby boy need to go back to the NICU? He was so small, he fit so perfectly on my chest? Why did they need to take him back? He was peeing, pooping, nursing, and sleeping? He was doing everything a perfect little boy is supposed to do? Sure, maybe he had a little trouble nursing the past few days, but he seemed to be getting the hang of it now? The nurses had said that was normal?
He was full term! I had thought the NICU was only a place where premature babies went; I had never heard the words “congenital anomalies” before. Little did I know, those words would etch themselves onto my heart, not as a piece of art but as a terrible scar.
Jason and the nurse looked at me and my baby boy as I clutched him tighter and cried out loudly,
“No, no, no! I can’t give him back! I just got him back!”
I was referring to a brief hour or so Carter had spent in the NICU the other day. Carter had swallowed a lot of my placenta (which had ruptured) along with lots of amniotic fluid. They had suspected this was why he was having trouble nursing and they had briefly sent him to the NICU for a “deep suck” where they emptied his tummy from all its contents, which they suspected were upsetting him.
During the brief window in which Carter had already been in the NICU, I was already traumatized. I had already gotten my first glimpse of separation anxiety and postpartum anxiety. I would awake from my pain-induced coma, see the empty bassinet, and hit the “call” button in a panic. I would cry out through tears, “Where is Carter? Where is he? Is he in the NICU? Is he in the NICU?!”
They would reassure me, “He’s okay, try to get some sleep, he’ll be back in your arms before you know it.”
I had just got him back.
I was supposed to take him home.
We were supposed to take him home.
With tears in my tired eyes, I looked down at my precious baby, and then looked back up at the nurse and asked, “When do we have to go to the NICU?”
“Now”.
I was so confused. I’ll never forget how awful it felt to hand Cater off to the nurse for him to be taken to the NICU. He was my baby! Why did I have to let him go? Today, I can’t believe I thought that was hard. Because now I know true difficulty, I know how hard it is to hand your baby to God — the ultimate “letting go.”
I had been very private up until that point about my birth story and our days in the postpartum room. I threw privacy out the window as I messaged family and friends from near and far, “I am ready to ask for prayer. Carter is the NICU. Tell as many people as you can. We will take all the prayer we can get.”
“What? I thought you were going home today! What’s wrong?“
“We don’t know.”
In the days that followed, many tests were done on poor little Carter. These lead to more questions than answers. There was lots of “poking” for bloodwork on his little feet, which always made him cry. It broke my heart to hear from cry from pain, but I knew it was for his own good.
Back then, I was medically illiterate. It didn’t matter how many times I googled the definitions of GGT & conjugated bilirubin. I didn’t understand enough about the GI tract to understand what was going on or why it was bad that conjugated bili & GGT (liver enzymes) were high. Back then, my ignorance was bliss. However, it didn’t feel like bliss to me at the time. I was confused, powerless to help my sweet Carter. All I could do in those days was pray and hope.
I remember when one of Carter’s doctors said to us, “I want to switch him from donor milk to a soy based formula. He’s missing a few key symptoms of this, but based on some of his symptoms it could be galactosemia. On the off chance that’s what it is, we need to stop breastmilk immediately until we can rule that out with the test results we have pending currently.”
“Oh, so he’s just probably allergic to milk?” I asked naively, “That’s not so bad!”
Both Jason and the doctor looked at me with wide eyes as they tried to explain to me just how serious galactosemia is and why it was more grave than a mere milk allergy. For your sake, I’ll keep it simple: Galactosemia is a terrible disease. Although I would later learn this was not Carter’s diagnosis, I would soon have to face that he had another disease just as rare and just as terrible.
The doctor proceeded to tell us terrible news, with such great bedside manner, that the news almost fell on deaf ears,
“At this point we’ve ruled out the more common things it could be and we are looking for something more rare to provide us with an explanation”.
After he left, Jason looked at me and said,
“That was not good news.”
“No it wasn’t.”
We sat in silence for a moment.
Jason said in a grave voice, “Let’s try to spend as much time with him as possible. You need to hold him as much as possible. Let’s get on video chat so he can meet our families. It sounds like there’s a chance he’ll be okay. But it also sounds like there’s a chance he doesn’t make it. I don’t want you to look back and regret how you spent this time.”
I couldn’t believe what he was saying. It was unfathomable.
“If he doesn’t make it, what will we do?” I asked solemnly, only half joking, “Suicide pact?”
Jason said seriously, “We would bury him. We would have a really nice memorial. We’d cry a lot. And we’d have more children.”
I couldn’t believe this was my life. Suddenly I pictured myself on that day, all in black, throwing myself into my son’s grave, as I cursed God, screaming, “Why?!”
I could not have imagined, even in my worst nightmares, how terrible it would actually be to bury Carter. No parent should ever have to bury a child, especially not their newborn baby. When it was actually time to bury him, I couldn’t scream or curse God. All I could do was cry.
The timing of Carter being born near a holiday did not help his situation. Because of the holiday, it was taking longer to get pending test results back. There was lots of waiting, searching for an explanation as to why Carter’s liver enzymes (particularly the conjugated bili and GGT) were so high.
They tested Carter’s thyroid which was normal. They got an ultrasound of Carter’s liver which was, ironically, normal. This left everyone with even more questions than answers.
Later, a kind doctor, who would soon become one of my favorite doctors, came by to round on our sweet baby boy. Carter was awake and looking around with his big blue eyes. Our boy was so cute, the doctor couldn’t help but say, “Hi buddy! Hey little guy!”
The doctor sat down and had a long chat with us. He asked us many questions and entertained all of my medically illiterate questions. Little did I know, this would become the status-quo for me and my favorite doctor over the coming weeks.
My rounds of questions for him consisted of things like,
“Well I was Group B strep positive in pregnancy, could that be it?”
“But you got the antibiotic right?”
“Yes”
“Then that’s not it.”
I asked him about things like the times I “cheated” in pregnancy. Like when I changed the cat litter box (toxoplasmosis), when I had sushi or coffee, and whether or not the estimated due date could be off, meaning he was simply premature? After all, many nurses had commented over the past few days about how Carter’s nursing struggles (poor suck/swallow reflex) were akin to that of a premature baby or “premie”.
“No, no, no. That’s not it…”
This was difficult to accept as I wanted to figure out the why. What caused this? I wanted to blame myself and find fault. Our doctor proceeded to ask me questions like, “Tell me about your pregnancy, did you have any complications?”
I proceeded to tell him that my pregnancy had been pretty normal. I mentioned that in his growth scans, Carter had been showing to be in the sixteenth percentile, but that my provider had told me they don’t start becoming concerned about growth unless you’re under the tenth percentile. I knew lots of small babies, and they were all fine. Right? Oh, how I wanted so badly to believe that everything would be fine!
The doctor asked me, “But you didn’t have preeclampsia did you?”
“No,” I said out loud as I thought to myself, “Or did I?”, as I looked down at my legs and ankles which were very, very swollen. The right ankle was particularly swollen compared to the left, which was still significantly swollen. My new friend, Anxiety, raged within in me. Back then, I didn’t know her name or how to fan into flame the raging inferno that was her embrace.
Unfortunately, that summer when I was pregnant with Carter, I had gotten into Downtown Abbey and watched the episode where (spoiler alert) Lady Sybil Crawley dies of preeclampsia shortly after delivering her baby. I remember how when I had watched that episode, I had sobbed and sobbed, praying for God to spare me in delivery so that I could watch my baby grow up. Oh, irony of ironies! In the episode, the premise is that they could have saved Sybil, had they listened to the doctor who was very concerned with how swollen her ankles were.
I looked again at my swollen ankles; I looked at my hospitalized baby. Here it was, I thought, the explanation! The reason to place the blame for Carter’s hospitalization on myself! Was it possible I was showing signs of postpartum preeclampsia and my Labor & Delivery (L&D) team had just missed it? Since the doctors and nurses did not know me very well, was it possible my ankles did not look so swollen to them? To me, they were off the charts and unrecognizable! Regardless, I put Anxiety on the backburner, without even knowing what it was I was even putting on the backburner. I mustered up the strength to focus on the very important conversation we were having about our sweet Carter.
The doctor proceeded to ask us question that would shape the course of our very future,
“His spit up, what color is it? It’s not green is it?”
“No.”
“That’s good. If you see any green spit up when you’re holding him, let us know right away. That would be very bad.“
The words floated around in the air for a moment as we all sat in silence. Little did I know that the words were prophecy God had already etched on His tablet that foretold the story of Carter’s life, a story where Carter rushes ahead of us to heaven.
The doctor proceeded to tell us the best thing we had heard in days,
“I look at the size of his head, how long he is, and his gestational age compared to how small he is…and I honestly think this could just be placental insufficiency. When the baby isn’t getting enough nutrients from the placenta, the body prioritizes growing important things like the head, which would explain his low birth weight and maybe why he’s having some trouble feeding. There’s no test for that though… But the thyroid looks normal and the liver ultrasound looked good… Even if he has galactosemia, we can treat that as an outpatient and he can go home. Right now he’s only here because he can’t take full volumes orally on his own and he needs the IV fluids to stay hydrated. He’s barely taking any formula right now so the IV fluids are primary source of nutrition.”
I found so much comfort in those words; finally, an explanation! Most importantly, an explanation that I could blame myself for: My placenta not being good enough. I was so happy, because while to some this may have been bad news, to me it was much better news than fighting a life long metabolic, genetic disease like galactosemia (or Alagille syndrome).
In my mind all we had to do from that moment on was get Baby Carter to feed better! Easy enough right? What babies don’t like their bottle? We ordered “better” bottles from Target for pickup and friends even brought their favorite bottles to the hospital, the kind that help a “spit-upy” baby.
I messaged the prayer chain with a spring in my step,
“Please pray that all that’s going on with Carter is placental insufficiency, which is the best case scenario for him. Pray that he can start getting good volumes at feeding times, so that he can go home in a few days.”
Honestly, I would give anything to go live in that alternate reality for even a day. How nice that would have been if that had been true.
I was messaging back and forth with a few friends who were enjoying their pre-Thanksgiving festivities together. These friends were nurses, so I had sent them pictures of my ankles, asking for advice as I pondered the question of whether or not a missed diagnosis of preeclampsia could be contributing to Carter’s hospitalization. (Which looking back, based on what I now know about the medical field, no way was that possible).
Anyway, I had been hoping to hear encouraging words of comfort from my friends, despite that nightmare of an episode from Downtown Abbey which haunted me. To my surprise and dismay my friend replied,
“If you’re right ankle is that much bigger than your left, I want you to go to the ER now.“
Shocked, I thought surely this was an overreaction. However, they were concerned that the swelling could a sign of a blood clot which postpartum moms can be at an increased risk for.
It was very late at night (or perhaps, technically very early in the morning?) and Jason was already asleep in our room. So I chatted with Carter’s nurse about my ankles and we both agreed that the swelling and my persistent dizzy spells were something to continue to monitor, but certainly not enough to merit a trip downstairs to the emergency room.
I returned to my son’s beside and gazed at the cute turkey one of the nurses had made for him, using his precious little handprint. The colorful display read, “My first thanksgiving”. Now it is one of my most prized possessions.
It was very late, or very early technically, so I agreed with Carter’s nurse that I should try to get some rest. In those days I felt guilty doing anything small such as even eating or showering because I could not stand to be apart from Carter. But even I knew, I couldn’t recover from labor without sleep. I pulled down my mask for just long enough to kiss my baby goodnight, “Happy due date, Carter. I love you.”
Whether I was leaving Carter’s beside for a few minutes or a few hours, it was always the most difficult thing I’d ever had to do, up until the day I had to say the long goodbye to Carter — the truly most difficult thing anyone ever has to do.
I returned to our postpartum room across the hall. I had been discharged and was no longer a patient on the L&D floor. However, we were allowed to stay in the room for an indefinite amount of time since Carter was in the NICU.
There, I tried to lay down and get some rest but I was met by the friend who had not yet revealed her name to me: Anxiety. She laid down with me. I hadn’t slept in days, yet I couldn’t sleep. Anxiety is strange like that. My thoughts were racing and so was my pulse. My arms and legs were numb, tingling and vibrating. I was dizzy even though I was laying down. What was this feeling I felt? I had always been a worrier, but this was new. It was not simply worrying, it was an inability to control my own thoughts and an inability to control my own body.
Without realizing what the medical implications of a panic attack could be and without realizing that I even had anxiety disorder, I simply put on my L&D playlist of hymns and worship songs, attempting to let them sing me to sleep as I gave my best efforts to not worry about Carter’s future, as uncertain as it seemed.
I must have actually fell asleep at some point because the next thing I remember was waking up screaming. A nurse rushed into the room as Jason awoke to the sounds of my freightened screams. She flipped on the big medical lights as she quickly sprung into action and told Jason to turn on the blood pressure cuff machine to check my vitals, the reading: BP: 161/93, Pulse: 134.
Translation: High pulse & high blood pressure, especially given my weight and age. I don’t remember how I got into the wheelchair. I do remember asking the nurse,
“Where are we going?”
As she pushed me down the hall with my frightened husband in tow, she told me,
“We’re going to the the ER.”
I think I had already been sobbing before that point, but I remember asking her through my tears,
“Am I…Am I going to…di–“
“Don’t think like that! We’re going to get you the help you need, okay!“
I don’t know how I ended up on the hospital bed in the ER, but I remember how bad it hurt when one of ER nurses missed my vain to get labs and an IV started. My blood was so clotty that there was a discussion of whether or not it was worth trying to send down to the lab. The drugs they gave me to lower my blood pressure and heart rate to a normal level just about knocked me out. However, I have some memories from that night (or technically that morning).
I remember looking over at Jason, seeing how scared he was. He never said it, but you could see it in his eyes. In that moment he didn’t know what was wrong with his baby boy and whether or not Carter was going to make it, and now he didn’t know what was wrong with me and whether or not I was going to make it.
I admitted to him that it was my fault we were there in the ER,
“I asked God to take me instead.”
More tears flowed from my eyes. Perhaps I should have offered Jason comfort in that moment, but the only words I could muster with the little strength I had left were,
“All my worst nightmares are coming true.”
Doctors proceeded to order a very extensive workup for me, including an ultrasound to check my legs for blood clots and even an MRI of my brain, which the anesthesiologist from L&D ordered because he was worried about the potential reaction my brain was having to the epidural.
I vaguely remember waking up in a drug-induced haze as the MRI technician asked me,
“You’re not claustrophobic are you?”
“I don’t think so” I said, half-asleep.
I resolved to close my eyes to avoid the claustrophobia, but couldn’t help but peek. They weren’t kidding, it was really small in there. I immediately regretted opening my eyes, so I shut them tight again until morning.
I awoke in the late morning, back in the postpartum room. How did I get it there? Had that all been a terrible nightmare? Was Carter okay?
No, it hadn’t been a nightmare. The bassinet was still empty. Carter was still in the NICU. The emergency room discharge summary sat on the beside table as a cruel reminder of the night’s events. The discharge summary told me that I had experienced a severe panic attack due to anxiety disorder and to follow up with my doctor. Oh, it also told me that I had a small kidney stone, no big deal. They had sent me away with medications to help pass the practically nonexistent kidney stone but nothing for the anxiety. All the other tests had come back normal: No blood clot and no preeclampsia, despite my self-diagnosis via Downtown Abbey.
This was the first time Anxiety told me her name. I was so confused and distracted by the kidney stone that I did not understand what she was trying to tell me. She wasn’t about to be some one night fling; no, she wanted to meet me at the altar, bound for life.
Today, knowing what I know now about myself and anxiety disorder, it is literally wild that the ER did not send me home with an anti-anxiety preventative medication or at least a medication to take in reaction to panic attacks, so that I could safely control the physical symptoms of a severe anxiety attack (i.e. high blood pressure) without a trip to the emergency room.
Unfortunately, I would battle anxiety without counseling from a licensed therapist or medical care from a provider for the rest of Carter’s short, but sweet life. It would not be until after his passing that I would come to realize that the panic attacks were not going away and that it is okay to ask for help. It took me a while to realize, there is a difference between worrying and anxiety disorder. One is something you can try to do less of through self discipline and prayer and the later literally physically affects your body in ways beyond your control. Honestly, sometimes I will literally be watching a sitcom and I start having a severe panic attack for no reason. It’s a physical reaction to posttraumatic stress. My head may know that Carter is in heaven and safe, but my body is always in flight or fight mode now. My maternal instincts are looking for my baby and they are confused, ill-equipped to grapple with what has happened.
Remember when I said my favorite doctor had spoken words of prophecy over Carter? There, in the quiet aftermath of that unhappy thanksgiving, the prophecy had come to pass. Carter was just about one week old when his nurse entered our room and proclaimed the coming of the prophecy, “Carter started throwing up green last night. We need to transfer him to Boise.”
Jason and I rolled our eyes so loud that you could hear them, and sighed so heavily that you could feel it,
“Okay, when are we going?”
“Now.”
Anxiety reared her ugly head again but there was no helping me this time because it was all about Carter. In his life, my anxiety would be anchored by the promise of his recovery. In his death, my anxiety would be untethered with no dock to bring this ship to port.
I don’t think I’ve ever gotten dressed or packed up a room so quickly. I remember the infant transport machine they brought in to carry Carter out to the ambulance. I wept. I hope you never have to see one of those. How is it that such a tiny person could need a machine so big and ominous? At least they let me ride in the ambulance with Carter. Separation anxiety in that moment would have killed me.
How lonely the drive from one hospital to the next must have been for my husband, Jason. Here he was, the protector of the family. Yet, there was nothing he could do to protect Carter or me from the traumatic events that transpired over the past week.
A week that should have been the happiest week of our lives, was in reality, one of the most traumatic weeks of our lives.
I look back on that week and see a lot of what we have come to call “happy-sad moments”. I remember how sad it was to watch Carter receive IV’s, get poked at, and prodded. But at the same time, I remember how truly happy I was to hold my baby boy, my firstborn. How in awe I was of him. Every heartbeat on the monitor, I praised God for. How I loved to rock him to sleep, sing to him, read to him, and pray for him, my perfect little boy.
Our ambulance was welcomed to the Children’s hospital as I stepped out into the cold on that Sunday morning with nothing but a thin cardigan. It was quite literally freezing outside, but thanks to my good friend, adrenaline, I was not shaken.
Thank the Lord, in this new and unfamiliar land of the Children’s hospital — here was a doctor who already knew Carter very well! A saint disguised in blue scrubs, he snatched Carter from the clutches of the menacing transport machine and welcomed my sweet son into the soft embrace of the radiant warmer.
This room, unlike the last NICU we were in, was not private or spacious. They had about 40 babies with 2 or 3 of them to one tiny, little room. We crammed in next to Carter’s new bed, unsure of what the future held. I was so confused as to how he could be so sick that he needed to be transferred when he looked fine and his vitals were stable, as they had always been. He was awake and alert, he was my Carter! Little did I know, at any given time there is so much more going on with the human body than meets the eye. One little thing gone wrong with the body, can have a domino effect on the whole person. Life is so fragile, and truly a miracle from the Lord.
We hadn’t even had time to go public on social media to announce Carter’s birth, yet somehow, the message of our brave baby boy spread so far and wide, that an entire airplane prayed for him that very day. Our church prayed at their Sunday service. Everyone was praying. All we could do in those days was pray and hope, while we let the doctors do what they do best.
I’ll never forget when the saint in blue scrubs introduced us to the pediatric surgeon. The pediatric surgeon is not someone you want to have on speed dial. Nonetheless, we would grow to know him very well over the coming weeks. I’ll never forget when the two of them told us they needed to “Go in there and take a look” at what was going on with his intestines. I didn’t even know what your small intestine did back then, but even I knew that couldn’t be good.
“Exploratory surgery?” I asked as started wailing.
How could it be? We had been praying for placental insufficiency, the best case scenario. Surgery sounded so scary. Why us, why our baby?
As the dreadful words “exploratory surgery” left my lips, they were followed by the silence of the ominous nods of the doctors. The other two parents who were separated from us by a thin “privacy” curtain fell silent. The sounds of my weeping filled the silence as Jason and the saint in blue scrubs comforted me.
Jason consoled me, “It’s okay, we’re going to find out what’s wrong so they can fix it.”
Carter’s surgeon added to the words of comfort, “This could be the best news for him yet, if this is a problem we can fix surgically once and then be done with, that is a much better prognosis than having a lifelong struggle with a rare disease like galactosemia.”
What comfort we found in those words! In the weeks to come, this would be our mantra for our family. We would praise God that the problem was only a surgical one. We would praise God as test after test (including the test for galactosemia) came back negative. Little did we know that these false hopes were only because the disease we were looking for was more rare and more unheard of than all the others.
God knew before Carter was born, the number of his days. God knew that when the sperm met the egg, Carter had Alagille syndrome. God knew that even though the syndrome would be proven “random”, as it would be determined to not run in our family (as the disorder often does get passed down through generations). God is sovereign and nothing is truly “random”. Carter was chosen. God knew my son was an angel sent to earth. God knew his days were short, but that He would use Carter to teach us all how to live. Carter would teach us how to hope, how to pray, and how to lean on God during hard times. He taught my husband and myself about a love I did not know existed. The type of unconditional love a mother feels for her children is indescribable. I didn’t know love like that existed before I saw Carter and that’s saying something because I really love my husband. And to think, that is all a mere glimpse of the love God has for us, his children, and the Church, his bride.
How could we have known then what God’s intentions were? How could we have not gotten our hopes up to see many days with our angel on this earth? We were new parents and mere strangers to the lonely club of infant loss; how could we have known that Carter wasn’t here to stay? No one teaches you as a child to only expect to have your child for a time. When you’re younger, they only teach you about stories with happy endings; they hide the books with stories as tragic as mine. They put those on a higher shelf and ban them from schools. We can’t talk with the children about mental health, they are too young to understand. We paint beautiful pictures of animals smiling on the ark and forget about the flood and the thousands of souls bellow it. We want the rainbow without the storm. We want the happy ending without the struggle.
Nonetheless, the storm was coming. And who knows when the rainbow will come to bring us a shred of hope for more than the next life.
Somehow, in that moment of the threat of “exploratory surgery,” in the quiet of that dark hospital room, I found the courage to ask the only question that was on my mind. Through tears I asked,
“Is there a chance….is there a chance he doesn’t make it?”
A pause so sharp it could cut glass and then,
“Of course, there’s always technically a chance. But I am not worried about that because he’s not sick. If he was sick we would be having a very different conversation.”
More words of prophecy spoken over our son, writing the foreshadowing for the ending of our really sad story. Up until that point, I had joked with close friends about how our lives could be the plotline for a situational comedy. If only we had realized, we were writing a tragedy of Shakespearean proportions. We simply never realized before this moment because back then, it was only Act One.
What a happy time that was, Act One! I would have give anything to have left the theatre at intermission and never return. Nonetheless, I was chained to my seat. The ticket was nonrefundable and God’s will would not be thwarted. The story continued to unfold before me like a train off its tracks:
“When will the surgery be?”
“Today at 5pm.”
We talked about their plans to make Carter “comfortable” and met the pediatric anesthesiologist. We shook many hands and many pleasantries were said. I was constantly weeping, constantly praying, and my chest was leaking.
I never knew what it looked like to be desperate until I saw myself in the mirror that day: Hair that hadn’t been washed in days, body frail from the pains of labor, and my shirt milk-stained because my child didn’t need my milk like the other babies. The hospital did a great job of jumping into action. They knew I had just delivered and they saw me in my puddle. So they lent a helping hand, giving me toiletries and pumping supplies. More importantly, they gave me hugs for comfort and tissues to dry my tears. Everyone in that unit really cared about my husband, myself, and, most importantly, my son. They cared about our family so much, they became our family. Little did I know then, together with our new family, we would all come to pray for Carter together when he got really sick and to mourn him together after he left this life for the next and was really gone.
In hours leading up to surgery, we prayed alongside thousands for our brave baby boy, Carter Matthew. I spent as much time with him as humanly possible and held him like it would be the last time. We walked down the long hallway behind his bed as they rolled him to the operating room. We kissed him and said we loved him. Then, just like that, they took away my baby from me. It didn’t matter how many times I gave my baby to someone else, it never got easier to be apart from him.
It’s still not any easier to be apart from him.
To think only a few months ago, my biggest fear had been a C-section. I had gotten pretty much my dream labor and delivery, but what did any of it matter without my sweet baby boy in good health? I cried tears of pure lament as they took my baby in for the abdominal surgery I never needed. I pleaded with God, bargaining with him again to take me instead. Could I rewrite my story, I would endure a thousand operations to let Carter’s heart beat again.
I hope you never have to sit in the deadly, silent chambers of the surgery waiting room, waiting for the phone to ring, or waiting for the doctor to come out with any kind of news. One step away from anxiety’s cruel threat of rehospitalization, I prayed as if my very life depended on it. In a way, my life did depend on it. As I have learned in the wake of Carter’s death, loosing him meant loosing myself. Somehow I must have understood this then, because even know heaven was what was best for Carter, I prayed for what was best for me: For Carter to outlive Jason and myself and to join us in heaven long after we were gone.
I read scriptures and sang songs of worship. I hugged my husband tightly who was not worried in the slightest. Jason knew then what in my medical illiteracy I failed to grasp, that this procedure was minor and the odds were well in our favor. I don’t know how I knew, even then, that odds were not my friend. I would be the new statistic and I would fall into the one percent with the rest of the outcasts and forgotten. Those of us that only God remembers and that God sets apart for a special kind of tribulation, more weary than most. Little did I know, what I then thought was the worst day of my life, was dress rehearsal for the coming tribulation, the one where in the wake of what should have been a happy Christmastime, Carter would need emergency surgery even though he was very sick. The one where me and my friend, the pediatric surgeon would have a different kind of conversation. The prophecy was coming and my prayers could do nothing to stopped it.
Still, in my limited wisdom, I prayed healing over my child; I prayed for God to guide the doctors and to give them wisdom. I prayed for God to give me the gift of raising my son and for more time. Some prayers were answered the way I wanted and some were not. God always answers, but sometimes the answer is “no”. He teaches us to pray in this way, “Lord not my will, but your will be done.”
If I’m being honest, I don’t like His will for my life very much right now. Moreover, I don’t understand what my purpose is, if not to be a mother to Carter. Of course, I still am a mother to Carter, just not in the way I had hoped or planned. I cling to the promise that one day I will see my son again. I pray to Christ for a speedy return, that all of us who believe may be gathered up with the Lord and the children who have gone before us to meet the Lord in the clouds. I pray now for this to be done, for I know this is the Lord’s will: That every tear would be wiped away and every tongue would confess that Jesus Christ is Lord to the glory of God the Father. He is coming and He is coming soon. May Carter’s life teach us what we need to learn to trust the Lord so we can join Carter and all the saints who have gone before us, finally free from our bondage to trial and tribulation, in the presence of the Lord.