From the outside, it probably seems like I can only remember the bad moments of Carter’s life. From the outside, it probably seems as if I struggle to hold onto hope. In some ways, this is all true. As someone who has been formally diagnosed with post traumatic stress disorder, often, when I close my eyes all I see are some of the worst moments of Carter’s life unfolding before me. I would love nothing more than to remember the good, even if the “good” was just for a few seconds here and there between some of the worst moments of my life.

What should have been one of the happiest times of our lives were over shadowed by the looming threat of death’s sting. After Carter’s first surgery, many were telling me Carter’s death was not imminent and not to worry. Yet, as a mother, I could not help but fear the worst. Every day that I rose, I prayed as if Carter’s life depended on it. Even in my worst fears and wildest nightmares, I could not have imagined how truly awful everything would become as it unfolded in the end.

In the moments after Carter’s journey to heaven, I could not help but feel relief. And I don’t feel guilty for that. It doesn’t mean I miss him any less or that I am not in pain. But as a mother when you are watching your child suffer, struggle to breathe, seizing, and more, you cannot help but feel a selfless feeling of relief when you realize that at least your child’s suffering as over. At least they are at peace.

The suffering I endured while Carter was in the NICU does not hold a candle to what I face now. For when Carter’s suffering ended, that’s when mine truly began.

I try as much as I can to enjoy pictures and videos of Carter, to try and remind myself of those little glimmers of “good” I shared with Carter in his short but sweet life. Sometimes I struggle to remember him as he was and feel as if I can only remember those photos and videos of him. I try very hard to vividly paint dreamscapes of him, with little to no success.

One of the hardest parts about grieving a newborn, especially a firstborn, is you don’t only grieve their personhood, you grieve who they never were. I often wonder what he would have looked like as he got older. Would he have looked just like his dad? Would he have gotten his dad’s smarts or my creativity? Would he have enjoyed sports or science or arts? Would he fall in love with my best friend’s baby so her and I could finally be “related”? I think these are things that most moms think about, we can’t help but wonder who our children will grow up to be.

However, even in Carter’s life, the reality of Carter’s condition often came to ruin my peaceful dreamscapes. Even when Carter seemed healthy, the threat of his diagnosis loomed over my dreams, threatening to turn them into nightmares. When Carter was alive, I often wondered about what his developmental outcome and life expectancy would be. Would we have to hold him back by a grade or two? Would his hearing be impaired? (Babies who are intubated and spend time in the NICU are at greater risk for hearing loss). Would he have to go back to operating room? When we talked of liver transplants and the possibility for rejection, I pictured him with stunted growth, maybe four foot eleven at thirteen years old. I pictured him in and out of the hospital, telling me he hated life and he hated God for afflicting him with his disease. I pictured loosing him before twenty years of age due to rejection, sobbing at his funeral. At the time, that seemed too cruel a fate to bear. Now I try to bargain with God, that twenty years or even ten would have been better than weeks. Yet, God knows the number of all our days just the same.

When I sat at that ominous conference room table and the doctors told us about the short bowel syndrome diagnosis, I pictured Carter there on the soccer field, with his backpack filled with his special “TPN cocktail”. I pictured the other kids making fun of him. I pictured consoling him as I flushed his central line. I pictured him sitting on the beach while the other kids waded in the water. He couldn’t go in the water because of his line. There, he cursed God and I sat with him while I tried to hold back my own tears, while I silently cursed God too.

If these “dreams” had come true, I wouldn’t have loved him any less. I was ready to be whatever Carter needed me to be. If you knew me before Carter was born, you knew I said things like I could “never” be a nurse or I could “never” move back to California. Yet moments after Carter was born, I became what he needed me to be. I would have moved back to California to be near UCLA. I would have overcome my prior fears and flushed his IVs. I would have sat in more surgery waiting rooms and prayed for him every time. I would do anything for my child. Anything.

But I never got the chance. Everyone says that death was best for Carter. Why did what was best for him have to be what was the worst for me?

I’ll never forget what one of Carter’s doctors said to us on that dreaded day. The day they told us that all of Carter’s small bowel had died. We had been in our hospital family room. I was praying to God with arms and hands wide open. Praying for healing over my child. A few days prior, Carter had been rushed in for surgery. What they found out then, was that some of Carter’s small bowel had lost blood flow. (At the time they suspected this was maybe a complication from his first operation. We would later learn that he had a blood clotting issue due to Alagille syndrome, which was still undiagnosed.) However, at that time none of Carter’s small bowel had died. If you don’t know anything about the GI tract, I encourage you to spend a few moments on Google to learn. I’ll still give you the SparkNotes though: You need your small bowel to live; it absorbs the nutrients from the food you eat. Because of this, they didn’t want to remove any of Carter’s small bowel that day. Sure, Carter had lost a few centimeters at one week old; that was no big deal. But this was a big deal. Loosing a few inches can be enough for a short bowel syndrome diagnosis.

So since there was a chance of blood flow returning his small bowel, since there was a chance some, if not all of the small bowel could heal, they did not remove any that day. They fixed a kink that they had assumed had been a complication from his first surgery and were hoping that all or most of the small bowel would heal in the coming days. Then, they would go back to “take a look” at what had and hadn’t healed, then they would remove any of the dead segments.

So since they were going back in soon, they left Carter’s incision open with a wound vac. If you don’t know what a wound vac is…don’t google it unless you have a very strong stomach.

So there I was, during Carter’s second operation in less than a week. They had gone back in to “take a look” and see how much of Carter’s small bowel had healed. However, in the days following his readmission, Carter had gotten very sick. Sicker than anyone had expected. He was not stable enough to be taken to the OR, so they had to operate at his bedside in the NICU. Carter had been having seizures, his ventitiltor was at 100%, he was needing blood transfusions and lots of fluids to keep him from becoming septic, and there were mere drops of blood in his catheter where pee should have been.

I prayed to the LORD with my arms and hands wide open. I prayed for a miracle. I said, “God, when the doctors go back into surgery, let them find out that all of Carter’s small bowel has healed.”

Instead, doctors would come to tell us in the coming hours that, to their surprise, all of Carter’s small bowel had died. How I cried and cried when they told me in the conference room as we gathered around that table. For them, it was business, another day at work. For me, it was the end of my life as I knew it.

They proceeded to tell us they had a small short gut clinic here in Boise, but warned us about how the divorce rate amongst parents of children with short gut is almost 90%. They told us the genetic test results would likely come in the next few days to provide some explanation. They told us there was a chance he could pull through and run around on the soccer field with his TPN backpack, but more likely than not, it was about making him comfortable in the coming days.

Even then, I didn’t give up. I prayed for a miracle. I called up the charismatics. Literally. I thought, perhaps my John-McArthur-belt-secessionist-self was standing in the way of a miracle. I needed someone with the gift of healing to come and lay hands on Carter, anointing him with holy oil. They did. But we can’t trick God into carrying out our will. That’s why we’re supposed to pray, “Thy will be done.”

When we got the test results and found out that Carter had Alagille Syndrome in addition to Short bowel syndrome, I was heartbroken. Either of those diagnoses independent of the other has a terrible prognosis, and he had both. It didn’t seem fair.

While I have nothing but respect and admiration for the wonderful people in the Boise NICU, I did not agree with a few key people who seemed to be implying that the combination of these two diagnoses should be enough to “pull the plug.”

I believe all life is precious and scared. Carter was my baby and I would love him no matter what. I didn’t care what the future held, I would endure any hardship for him. So after the diagnoses, we held on to Carter. However, on top of all this, at this point he was very sick and septic. So for Jason and myself, it was not a question of “is his life worth living?”, it was a question of, “Is he going to better?”

You can’t live without your kidneys; you can’t live without peeing. Carter hadn’t really peed in about five days, despite being on several diuretics. He was not a candidate for dialysis because of everything else going on with him. There were still only drops of blood in his catheter where pee should have been.

So our prayers shifted after the short gut diagnosis, from “heal Carter’s small bowl” to “let Carter pee.” I prayed minute by minute to see the catheter full. But his kidneys never woke up. Carter never gave me the chance to let me show him that I would have loved him regardless of any diagnosis.

The day Carter passed away, I awoke to see still nothing but drops of blood again, even after his kidney specialist had attempted what she referred to as a “medical hail Mary” to wake up his kidneys. Carter’s body was so heavy from all the fluid he couldn’t pee off and it was starting to fill up his lungs. He was so sick and he wasn’t going to get better. The fluid that was stabilizing him and preventing many cardiac events, the fluid that was preserving his very life was drowning him and slowly taking his life. Death was inevitable, so as you already know, we decided it was more merciful to hold him in the end, as a family of three, rather than let that ominous code light flash with dozens of doctors and nurses in the room.

As another Christian loss mom very wisely said to me, when it comes to a moment like that, it’s not really a choice to sign a DNR or to take your baby off the ventilator. What kind of parent would make their child suffer in the end?

We had prayed often during Carter’s life for “mercy.” The mercy came, just not in the way we wanted. In the end, my prayers shifted from spending years with Carter on the earth, to asking the Lord to usher Carter home to heaven painlessly and quickly. These prayers were answered in the way I desired.

Now there is nothing left to pray other than “peace” and “hope”, hope for more than in death. I am only twenty-six and my husband, twenty-nine. Assuming Jesus doesn’t come back in our lifetime, we likely have a lot of life left to live. Right now, with no living child to parent, the threat of longevity of live seems a cruel joke. I have so much hope to be with the Lord and to be reunited with Carter in the next life. But for my own safety, as someone formally diagnosed with depression, I have to find hope in something other than death. I have to find some even small shred of hope in this life. Something to tether me to earth.

That need for a small shred of hope has led my husband and I to begin a journey of applying for our foster care license. This process takes a very long time with many classes and training involved. Nonetheless, we are prayerfully moving ahead, asking the Lord if this is what He has next for us.

I believe there are children out there who need me as much as I need them. I know I could never replace their birth mother and I know they could never replace Carter; at least we would have each other to ease the pain of our mutual losses. This can be an equally beautiful and tragic picture of unconditional love.

I love children I haven’t yet met. I pray for children I haven’t met yet. I pray that however long I have them, God would use me and my husband to bless their life.

I’ve heard it said, “The thing about foster care is you might have to give them back.”

I know this. Nonetheless, I am not scared of giving my children back. I have already known what it is to to surrender a child to God, the ultimate “giving them back.” I am not scared because, as I have learned in Carter’s journey to heaven, I can do all things though Him who strengthens me (Philippians 4:13).

I am not trying to minimize the difficulties of foster care, I know it will be hard. But I also know it will be worth it. Just like Carter’s life was hard, but so worth it. The way I see it, there is no greater joy in life, apart from knowing the LORD, than the joy of being a parent. My husband and I have so much love to give, I know we would be great parents to any child who entered our home. Just like we were and are, even still, great parents to Carter.

And just for the sake of clarification, future biological children is not off the table yet. We have some further genetic counseling we are prayerfully pursuing before we make a decision about that one way or the other.

Even if we get great news from our test results about future biological children, I ask, “Why not both?”

Who says it has to be either or? Why can’t you have your own biological children and also foster/foster-to-adopt? All children are God’s children, however they come to us. Adopting a child or having one biologically doesn’t mean they are here to stay. There are no guarantees in life, ever. Carter’s occurrence of Alagille was random. It happened to me once, it could happen to me again. They speak of things such as these in terms of percentages and chances, but is anything in life chance? I believe that God ordained the number of Carter’s days and that the Lord chose Carter and set Him apart for heaven. I also believe that the Lord chose me for the weary path I walk. I am being put to the test. Without the Lord, I would fail. If it were up to me, I would forever curse God and His plans and walk away from the fold.

But the Lord is holding me. He keeps me still. He can handle the weight of my temptations and my temper tantrums. Like a small child, I cry to him, kicking and screaming and He soothes me with sweet songs and holds me near.

I am a mother with empty arms. I pray to the Lord daily that my arms will not be empty forever. More children will never replace Carter and I will always miss Him. But the Lord knows, the desire of my heart is to have more children, siblings for Carter to watch over. Somehow and someway, I pray this would be His will and it would come to pass. This life is too short to not have any hope to hold onto. I don’t know if these dreams or visions are from God, or from myself. So I am praying for clarity and wisdom. My husband and I are following God, hand-in-hand because He knows the way.

It’s blind faith and desperate trust that keeps us sane:

"Trust in the Lord with all your heart
    and lean not on your own understanding;
  in all your ways submit to him,
    and he will make your paths straight."


Proverbs 3:5-6

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