When Grief Became Deeply Personal

Shortly after we got the all clear on Jacob, I was at one of our friends' houses for what has since become our standing Wednesday morning playdate. At the time, though, I think we were only in our third week of getting together and were still getting to know one another.

While I was there, I got a call from a Guntersville number I didn't recognize. As is my normal practice, I let it go to voicemail, assuming it was spam. A few seconds later, I noticed there actually was a voicemail. It was from our pediatrician's office letting me know our son's test results were in and asking me to call back.

My heart sank.

If the results had been negative, I couldn't imagine why they wouldn't have just said so. I called back and was told the nurse would call me in a few minutes. Those few minutes felt much longer. When the phone finally rang, I already knew what she was going to say.

Our son had tested positive for MEN1. They would be referring us to a pediatric endocrinologist in Huntsville. I hung up the phone and cried. This time, the shock really settled in. More than anything, I didn't want to call Jacob. I knew exactly what this news would do to him, and for just a few minutes, if I didn't say the words out loud, I could pretend they weren't true. My two friends sat with me, prayed over me, and simply stayed.

For the next forty-five minutes or so, they quietly held space for my grief until I finally decided it was time to go home and tell Jacob. I have thought about that morning many times since. In so many ways, we were barely more than strangers, and yet they were willing to witness one of the worst moments of my life. They didn't try to fix it. They didn't rush me. They simply stayed with me. That kind of kindness leaves a mark on a person.

I left the playdate and called Jacob on the drive home. I don't know what I expected his response to be, but it was stronger than I anticipated. He decided to leave work immediately. That afternoon, I had planned to do a job-shadowing experience while my mom watched our son. Instead, I drove to the church where she worked to let her know I wouldn't be going.

By then, I had pulled myself together enough to drive. I honestly thought I was doing okay. Then I saw my mom. The moment I walked through the doors, everything I had managed to hold together came rushing out.

The composure I'd held onto so our son could finish his playdate...

The composure I'd managed while calling Jacob...

The composure I'd forced long enough to get myself to the church...

It all disappeared, and I completely fell apart. Looking back, I don't remember every conversation from that afternoon. I remember being held. I remember our church becoming exactly what the Church is called to be.

Some people prayed.

Some people cried with me.

Others quietly took our son to play so he wouldn't have to carry the weight of a moment he was far too young to understand.

About twenty minutes later, Jacob arrived. When he got to church, I encountered a side of him I’m not sure I had ever seen before. The fury that he felt towards God in that moment was palpable. The weight of a fifty-percent chance landing exactly the way we had prayed it wouldn't was almost more than he could bear.

Our lead pastor took us into his office along with one of our campus pastors and a few others. They prayed over us again, and eventually everyone slipped quietly out of the room except our pastor.

What I remember most is what he didn't do. He didn't rush to explain God. He didn't try to wrap our pain in a neat theological answer. He simply made room for it. He listened. He wrestled with us. He shared some of his own questions. Somehow, he offered hope not because this was easy, but because it wasn't.

I've thought about that conversation many times since. I don't envy the people who are called to shepherd others through moments like those. But I will always be grateful for those who can do it with the wisdom, gentleness, and the humility he showed us that day.

Our son's MEN1 diagnosis forced us into a space that we later learned the correct terminology for: dialectical thinking. It's the ability to hold two things that seem to contradict each other and refuse to let go of either one. For me, the deepest tension that came out that day was this:

God is good.

God is all-powerful.

And suffering is real.

Before this season, those truths had always been easier to hold together because suffering had mostly been something I witnessed from a distance. I knew people who had walked through unimaginable pain, and believed the same things about God's character that I still believe today. But believing something in the abstract is different from having it become deeply personal. There were other tensions too.

If we had known everything we know now...

If we had connected the dots sooner...

If someone had recognized the signs earlier...

We likely would have made a different decision and never had a biological child. And yet, we cannot imagine our lives without our son. He has shaped us, stretched us, and taught us more about the love of God than we knew was possible. Both of those things are true. Learning to hold them together has been one of the hardest parts of this journey. I still am carrying a lot of anger. I still have deeply painful questions. It has forced us to wrestle with taking responsibility for what we can, not taking responsibility for what we can’t, and understanding we cannot force anyone else to take responsibility for what they haven't.

I still don't have tidy answers for why suffering exists or why heartbreaking things happen to children, and I don't know that I ever will. I've had to learn that trusting God through suffering doesn't require me to have those answers. What I do know is that Jesus has continued to meet me in my questions, not just in my certainty, and that has become enough to keep taking the next step.

When I try to explain why a condition that likely won't affect our son until adulthood weighs on me so heavily today, I usually say this: Most parents know that, at some point, life is going to be hard for their child. What most parents don't know is what that hard will be or when it will come. We do. That knowledge changes something. It means that, long before he's old enough to understand genetics, we'll have to begin helping him understand his own story.

One of our greatest hopes is that MEN1 simply becomes a normal part of his life. We want him to know about it in age-appropriate ways, little by little, so that there is never one devastating conversation where his world is suddenly turned upside down. More than anything, we don't want him to grow up thinking of himself as the sick kid.

During that season, a few resources became trusted companions. Pete Greig's God on Mute gave language to prayers I didn't know how to pray. Max Lucado's You Are Never Alone reminded me of God's nearness when He felt painfully silent. N.T. Wright's Surprised by Hope challenged and expanded my understanding of eternity in ways I'm still processing.

Another lesson this journey has forced me to learn is that hindsight is only helpful in small doses. Too much hindsight quietly rewrites history. It takes what I know now and projects it backward onto decisions that were made with far less information. I have come to realize that isn't wisdom; it's just another way to punish myself.

I've had to come back, over and over again, to one simple conviction. Our son is here for a reason. I believe God called us to have him. If I can't trust that, then I honestly don't know how to make sense of any of the ways I believed God led us before this diagnosis. If I believe God led us to become parents, and believe He is the author of life, then I also have to believe our son is exactly who God intended him to be. That doesn't make this easy. But it gives me solid ground to stand on.

Another unexpected way this journey has changed me is in how I experience music, particularly worship.

In general, I wouldn't describe myself as an especially emotional person. I cry, but not often, and almost never in public. If you've made it this far in the story, you've probably noticed that my instinct when life gets hard is to analyze it. I research. I ask questions. I build mental risk matrices. I look for the next decision to make. Music doesn't let me do that.

Somewhere after Jacob's diagnosis, worship became one of the few places where all the thinking stopped, and I was simply left with the weight of what we were carrying. I still don't know if that's because I haven’t fully processed my grief or because suffering has a way of making life feel just a little more poignant. Either way, music began reaching places in me that words and research couldn't.

In January, Jacob and I were both asked to participate in a worship night at church. One of the songs was Center by Bethel Music. I don't think that song could have come into my life at a better time. The bridge, in particular, has become both a challenge and a prayer. It says:

“And my whole life for Your glory

My whole world for You only

Everything for the honor of Your name

And if my days tell a story,

let it be of You only

Everything for the honor of Your name”

It has continued to force me to wrestle with the idea of can I offer my life and the life of my family wholly and completely when it’s not going according to plan? Can I make even this part that is really hard honoring and glorifying to God by walking out this season marked by trust when what I really want to do scream at how unfair it is? It has taken many months of crying out these lyrics as a challenge to our Maker with a depth of emotion I believe only the Holy Spirit can understand to finally get to a place of peace with this song. But throughout the last several months, I have found myself singing those words with tears I didn't even realize were there.

That has become my grief more often than not. It rarely shows up in dramatic moments. It shows up when a lyric catches me off guard or when a truth I have sung a hundred times suddenly carries a different weight. Then, for a few minutes, all the anxiety, planning, and striving give way and I fight to remember that my job is not to carry the future. It is instead to keep bringing it back to the One who does.

There were other songs that became companions during that season as well—New Wine, Names, Good Plans, Psalm 46, Malibu, There Will Be Time, Smoke Clears, and It Is What It Is. Each one seemed to give language to a different part of the journey when I didn't have words of my own. I think that's one of God's amazing gifts that I have known for a long time, but never so personally as I have recently. Sometimes He doesn't answer our questions. Sometimes He simply gives us a song to sing until we're ready to ask them again.