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Emmanuel, God with us. This isn’t usually a phrase I think of in the middle of summer. Still, the phrase permeated my mind in a new way that July.

Emmanuel, God with us. It’s the greatest Christmas gift ever. But Christmas was a long way off. So was the due date of our son. And yet, there he was, four months early, a week old, a foot long, and 17 ounces small.

When he was born we named him Jonathan, “God’s gift.” We knew that every day with him was a gift. We hadn’t been sure he’d make it to that point. When I went into labor a day shy of 21 weeks, we were fairly certain we were losing our child. The doctors had stopped the contractions for two weeks, and then the labor pains came back. We hadn’t hit medical viability, but at a gestational age of 23 weeks, we’d gotten as close as we’d get.

It was an odd spot to be in—encountering life and potential death simultaneously. At the announcement of his birth we didn’t get cute baby outfits, toys, or diapers. He was too small, and no one was sure he’d ever grow big enough for them. A few friends bought stuffed animals or blankets, but mostly we got food and cards and prayers. The latter were the gifts we needed most.

We learned something about presence that season. Our son spent five months in the neonatal intensive care unit (NICU). He beat the odds; he lived—but his was a hard road of uncertainty. On his due date he was recovering from his fifth surgery. A week later he had a sixth surgery.

Through it all we were surrounded, and that meant everything to us. Beginning the day I went on bed rest, we had an international and ecumenical group of Christians praying for us. We knew we weren’t alone.

In the still of the night at only 21 weeks pregnant, I silently shouted toward florescent hospital lights, “Why, God?” After many moments of struggle, I surrendered my unborn son to him. It was tough to do, but who was I kidding? I wasn’t in control. I had no idea why my body thought this pregnancy was over. I so desperately wanted to be only halfway there. Every parent at some point learns to give up their child to God, to trust that they’ve done the best they can and let go. That point just hit a lot sooner for us than for most.

As I prayed and screamed and surrendered, I felt God’s presence: his hands on my beating heart and spinning head and his words: “I’m here.”

I didn’t hear “It’ll be alright” or “I’ve got this one.” I didn’t hear any of the assurances I wanted to hear. Just “I’m here.” And love. An outpouring of love—“I’m here, I get it; this is hard.” He’d gone through this before too.

Then I understood his gift anew. Emmanuel. God with us.
Over and over again that first half year, through renal failure, heart surgery, and bowel perforation, God was there. He didn’t tell us that our son would live. But he did tell us that he was there, walking with us. And somehow that made all the difference.

Our friends struggled to find the right words to say as they walked with us. Some quoted Scripture, some said they were praying. Some said just, “We don’t know what to say, but we’re sorry.”

Often the wisest-sounding words didn’t comfort. Instead they felt like a pill we were meant to swallow. “See, it says here that it will all be OK, so stop your fretting and just trust God.” Or “If you really believe that God has a plan to prosper you and not to harm you, your son will live.” No one said so outright, but this was the undertone I felt in the sage wisdom passed on to me by friends.

The problem was, I knew it wasn’t up to me. I knew I couldn’t “faith” my son into living because faith isn’t a verb. It’s a noun. A non-count noun, at that. I can’t have one faith or two faiths, I can just have faith. Even the smallest amount can move mountains, Jesus said. The rest was up to God in his mercy. I could weep and mourn and cry, and I was blessed when I did so, but in the end that was all I could do. We trusted that God knew best.

I wish I could say that all this experience with grief and uncertainty has given me better words so that I can in turn comfort those in mourning, but I am as awkward as my sage friends. As my heart bleeds for church members who have lost their loved ones or found themselves without a job or hurting in so many other ways, I have no words. I have foolish, well-worn sayings and Scripture verses that may or may not apply, but those seem so thin.

The words that meant the most to me in that time of uncertainty and fear came most often in stumbling and halting sentences. Those sentences said something that wise words could not. Those words said, “We are here. We can’t fix it, so we won’t try. But we will walk with you. If you mourn, we will mourn too. And if you rejoice, our joy will join with yours.”

“I am here,” God said to me as I stared at industrial beige and pink in the maternal fetal medicine wing of the hospital. I felt his peace again when peace made no sense, as we watched our swollen son be packed into a coffin-like box to be transported for gut surgery, uncertain how much bowel had died or if he would live. I am here. Emmanuel.

“We are here,” his church echoed. “We will walk with you in good and bad. We will pray with you. God will put us in your life just when you need us most—in the family room of the NICU as your son is prepped for heart surgery. In the hospital cafeteria as you muster strength to eat, uncertain of his future. In our nightly prayers we will walk with you. When you don’t have the strength to hold up your arms to God, we will hold them up for you.”

My pastor was preparing to move, to take a call in a different country as I was put on medical bed rest. He kept baptism rites in his car with him, in case he got a call from us. He wanted to be able to get to our bedside to baptize our son while he was alive, if he could.

On Jonathan’s date of birth, my friend Katie wrote his name in pencil on her calendar so that she could remember the anniversary of his birth with us, in bereavement or in celebration, even if he didn’t make it to his first birthday.

I didn’t know these things until a summer later, when a happy Jonathan was bouncing on my knees, but these thoughtful friends brought tears to my eyes. They would have been there for me, would have sat with me, even if doing so was hard.

“I am here,” was all God said. And it was enough. When those around me mourn, sometimes all I have is my presence. And you know what? I think that may be enough.