It seems like just yesterday, when my husband and I took Carter to the emergency room on that cold, dark Christmas night. The snow was like shards of broken glass. We prayed together with family and friends that Carter was merely fussy and gassy, and hoped we were just being paranoid.

“Better safe than sorry.”

I rushed from the ice-skating rink of a parking lot into the emergency room, in nothing but my pajamas and a flimsy cardigan, while the snow fell down violently around me. Though her cold grasp should have consumed me in shivers, I was not even the slightest bit cold, it was the strangest sensation. My body was filled to the brim with all consuming adrenaline, a glimpse of a mother’s relentless will to protect her child from harm at any cost.

It seemed as if an eternity had passed between when we were sadly welcomed into the emergency room, and when we were finally seen by a doctor. To our relief, Carter’s surgeon was on call that night and came in to see him. There was so much relief in seeing him, like seeing a long lost friend from another life. Yet, so much pain in the burden of knowing why it was that we were reunited with him together, that very Christmas night. 

I’ll never forget when he said to us, “I have no idea what the flip is going on. But I don’t like what the liver enzymes are doing.” 

Carter’s conjugated bilirubin was at 13.0 

Liver enzymes in the 10,000s. 

When I saw those figures, I knew enough then about the liver to know, Carter was dying. 

I never imagined, even in the worst of nightmares, I would be begging people to rush my child back to the NICU. Yet I begged, for Carter to return to the very place where, for so long, I prayed for him to leave so I could take him home.

There is something so desperate about being a parent and not being able to give your child what they need. What can I do to lower bilirubin levels in the blood? What can I do to mend a sick liver?

Nothing. 

The complete lack of control for your child’s wellbeing is such a desperate thing to experience. It is a pain so great, I would wish it upon not even the worst of enemies.

All I could do in those moments was pray. I would plead my case to God. And I would ask others to beg and plead with me. I thought, deep down, the more people who were praying, perhaps we could change God’s mind from what was so clearly happening.

Even so, His will would be done.

In the lonely depths of the pit that is the ER, Carter went from zero to hundred so fast. That very afternoon he had been peeing, pooping, and bottle feeding. How were we supposed to know he had early signs of total intestinal failure? The doctors combed through the yellow legal pad where we had documented every feed and every diaper, for the entire week we had him home. They praised us for our diligence, they praised us for the information, and they assured us that we had great instincts to bring him in when we did. We were even assured, in the days that followed, that we couldn’t have known any sooner than we did. They assured us that if he hadn’t been discharged from the NICU, it wouldn’t have changed anything, because his decline happened so suddenly and so fast. “There’s no way you could have known. There’s no way any of us could have known.”

I remember, in the ER, when it was time to take Carter on a journey, for an ultrasound. To think, months ago I had happy ultrasounds dreaming of him in my arms, at home.

There are no bassinets in the ER, so for our journey, I laid the hospital bed and held little Carter tightly in my arms, his father beside me, as we were wheeled toward our family’s final destination.

Little did I know this was the last time I would see Carter’s big blue eyes, the last time he would be awake. Little did I know I would never hear him cry again or give me a smile, or a soft “coo”.

He was declining very quickly. He was struggling to breathe. His heart rate was elevated. 

He was crying because he was in pain.

Lots of babies cry, but I hope you never have to hear yours sound a scream of pure pain and desperation. It is a sound that even my nightmares are afraid of. To this day, I hear his scream from that long night deep in my soul. I loathe that in the moment, I was not a doctor, and I was not God. Therefore, I was powerless to help him.

There was nothing I could do. So I cradled my baby tightly and sang him through my tears,

silent night
holy night
all is calm
all is bright
round yon virgin
mother and child
holy infant
so tender in mild
sleep in heavenly peace
sleep in heavenly peace

It seemed like another eternity passed from that moment in the emergency room, to readmission in the NICU. When I saw Carter’s neonatologist, I practically wanted to hug her in relief. Not only had we grown fond of her, as with our entire medical team, I wanted to hug her because she could give my baby what he needed.

Praise God, here was someone who could give Carter the support he needed, someone to try and save him! Even if she couldn’t, she could make Carter “comfortable.”

“Comfortable” is my new least favorite word.

Sadly, comfort was what Carter needed, he was very sick in the end, and I am thankful that he didn’t have to feel the full extent of his earthly pain during those last five days where he fought so bravely for his little life, for mommy and daddy. There is nothing harder than to hold your baby, and cradle him, while he dozes off into his sweet eternal slumber.

…

I often think of that Christmas day, what if we had brought Carter to the ER sooner, 6 hours sooner? 3 hours sooner? 1 hour sooner? What if?

I have struggled my whole life with obsessing over all the “what ifs”? It proudly earned me the nickname from one of our favorite doctors of “The What-if-er”.

What I honestly need to preach to myself every minute, to get through each grueling day in the wake of my son’s death, is no amount of what-if-ing could have saved my son. The many moments of his life I spent “what-if-ing” could have been more moments I enjoyed him, held him, sang to him, and pulled down my mask for just long enough to kiss his sweet little forehead. Those are the moments I will cherish forever. The worrying that plagued me during my son’s life, those are the moments I care to forget. Those are the moments I struggle to forgive myself for, even now.

They say, live in the moment, and take it one day at a time. I’m here to tell you that they are right. Man makes plans, but only the LORD establishes his steps. I can’t change the past. I will have to live with some amount of regret for the rest of my life. I am trying to learn to forgive myself, for all the things I regret thinking, feeling, and doing during Carter’s short life, the things I would have done differently if I had known my time with him would be so short.  

Would if I could, I would trade that extra hour of shut eye, and that trip out for coffee, for one more cuddle, one more coo, or one more sweet lullaby.

Live everyday like its your last, and don’t take for granted the ones you love. Count your blessings, and if there is breath in your lungs, give thanks to God.

None of us deserve the blessings of the Lord’s common grace. 

Let His mercies teach you to trust him, to seek His face. 

Though if I could, I would take the cup of that bitter Christmas night from me. Were it my will, I would be with my baby, instead of writing these sorrowful words. But I have this blessed assurance, Christ is alive, and Carter is alive in His presence, better off than any of us. May Carter’s life, teach us all how live.

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