“Your baby has two abnormal conditions”—brain cysts and something I didn’t fully understand about his abdomen. “Both,” my doctor said, “on their own aren’t terribly unusual and often go away during pregnancy. What concerns me is that your baby has both abnormalities which could be the sign of a chromosomal disorder that would prove fatal.” A more specialized ultrasound was needed, and an amniocentesis would confirm definitively, he added.

Excuse me? Did I just hear correctly? Did my doctor sitting five feet across from me just say my baby could be fine, or he might die? I know I verbalized some form of that question, and I know I was speechless upon hearing him answer in the affirmative.

 My doctor then said he’d have me go straight to the hospital for the procedures except that department had already closed as it was the end of the day before the holiday weekend. “They will also be closed tomorrow, and there are no other machines in Colorado Springs we can use. I’m very sorry,” he said, “but you will have to wait until next week to have the tests.”

Wait until next week to learn the fate of my baby? Wait through Christmas Weekend? Again I couldn’t believe my ears. Was this really happening, or was this a bad dream from which I would soon awake?

But four very eventful days later, we learned our baby had Hypoplastic Left Heart Syndrome—“the most serious heart defect there is,” we were told, where the left side of the heart does not develop. And three days after that, Trisomy 18 was confirmed. Because our son had both conditions, he was found “incompatible with life.” I was told my baby could and probably would die inside me any day. 

“How will I know if he’s died?” I asked my doctor. “When you don’t feel him kick for about two days,” he answered.

And so began my surreal journey of waiting for my baby to die…of feeling so alone, so different from other moms, from people in general. The mountaintop joy I’d felt being pregnant turned upside down as I now walked “through the valley of the shadow of death” (Psalm 23:4). Fears I never would have imagined and a sadness I didn’t know possible were now my norm. Though I looked like a typical pregnant woman on the outside, I was sorrowing and suffering in a very unusual way I felt no one else could understand.

Except God.

Since the night of that first ultrasound, my heavenly Father had been making his Presence known…through a phone call, a bird, an old friend, a new friend. And he continued to make his Presence known for the next four and a half months that my baby didn’t die. My tender, loving God and my precious, kicking baby became my Constant Companions: both I couldn’t see, but I knew they were with me—24/7. They were always with me.

And somewhere in that journey, my unseen world became just as real as my physical surroundings. I was existing—not really living, I felt—someplace between earth and heaven, and though that caused me to feel different from most humans, my invisible world provided fertile soil for my faith to flourish. As days turned into weeks, and weeks became months, my intimacy with Immanuel—“God with us”—deepened and grew. I can’t explain it, but God carried me those unthinkable months and then through further events I truly didn’t know how I could bear.

On Friday, May 12th—Mother’s Day Weekend—my darling, almost five pound Baby Ben was born, full term.

He had a lot of dark hair and a precious little face and body.

His eyes were open as all of his siblings got to hold him.

He squeezed his daddy’s finger.

I may have experienced pure joy when all five of my children surrounded me—when we were visibly a family of seven.

And then, about five hours later in the dark of the night, as I held my beloved newborn, a nurse leaned over and whispered something to me. I remember asking, “Are you sure?”

She nodded.

I looked at my sweet Ben….

My baby was in my arms, but he was gone.

* * * * *

There’s so much more I haven’t said…and so much more to say. It’d take a novel—which, God willing, I hope to be able to share someday.

But nineteen years later, I’m still living somewhere between earth and heaven—especially because four of my children live here, and one lives there. God is still my Constant Companion, and he still makes his Presence known in sweet and surprising ways. I know he and Ben love me very, very much, and I look forward to the day they will no longer be invisible.

I never would have chosen the road of suffering I’ve traveled, but I’m grateful it became the path of trust and “street of gold” on which I’ve spent so much time getting to know my God. The apostle Paul once wrote: “I want to know Christ and the power of his resurrection and the fellowship of sharing in his sufferings, becoming like him in his death, and so, somehow, to attain to the resurrection from the dead” (Philippians 3:10-11). Through my suffering, I’m thankful I got to (unintentionally) walk with Jesus and get to know him…to experience the blessing of living life with him and new life through him.

And that, my friend, is why I’d like to lend a hand to you, especially if you are sorrowing and suffering right now, and guide you to Jesus. Because of Jesus, death is not the end of the story, but joy and glory will be. And because of Jesus—I do personally know—grieving hearts really can experience beautiful life anew.

No matter where you are on your journey, may you discover afresh Jesus’ love for you.

“My dove in the clefts of the rock, in the hiding places on the mountainside, show me your face, let me hear your voice; for your voice is sweet, and your face is lovely” (Song of Songs 2:14).

He cares about you more than you could possibly imagine.