Written in the stars, storms, or soil?

Stars

A year ago today David and I went to a routine neurology appointment for Payson.

We didn’t expect anything but a quick check in. As soon as the neurologist walked in the room, he held up a folder. “His gene panel results came back. We found something interesting.”

‘Interesting’ is the word you use when something briefly snags your attention. ‘Interesting’ IS NOT captivating or fascinating— words characterized by total drive and passion— it’s the word for something lesser, something trivial, something non-threatening, dull, and unimportant even. It’s a sneaky oxymoronic word that aligns more closely with the sentiment “didn't interest me at all”. It’s what you say after judging a second-grade science fair, or how you feel about the report you wrote on a teacher-assigned topic. It’s what you say about the movie you weren’t really into. ‘Interesting’ is the word you use when you have no real feelings about the subject. But most of all, ‘interesting’ is NOT the word you use to tell someone that their child’s genetic panel came back revealing a rare, life-altering genetic mutation.

Dravet syndrome.

I had never been more scared than I was when I heard those two words. Fear washed over me. I looked across the room at David— his face was white. You see, we already knew someone with Dravet syndrome, and that was the one diagnosis I DIDN’T want. The one diagnosis I kept brushing off with “it's too rare”, “we already know someone with that, it can't possibly be Dravet”, “he's not developmentally delayed”, etc. all the things I said to reassure myself that it wasn't Dravet.

But it was.

A single ‘interesting’ gene mutation, and there it was— a lifetime of incurable drug-resistant epilepsy, increased risk of death before age ten, and progressive cognitive and developmental decline. The only thing I could do was reject it. The neurologist must have made a mistake. I asked the neurologist how sure he was that it was really Dravet— he looked at the genetic panel report in his hands and then looked back to me. “Ninety-nine point nine perfect sure.” He said.

My heart was pounding so loud I could hear it the whole walk out of the hospital room, down the long, empty icy halls, and out into the hot July parking lot. I leaned against the car. David and I looked at each other, not saying anything, not knowing what to say, and afraid to talk about it.

I was 36 weeks pregnant. We were four weeks away from welcoming our second child into the world, and now our firstborn’s life was so uncertain.

David kissed me. “We’ll talk about it when I get home.” I nodded. He got in his car, driving back to work. The tears were already starting as I buckled Payson in his car seat. My whole world had just been shattered. My happy, perfect baby boy just fifteen months old who had already weathered 131 seizures over the last eleven months was suddenly so different from the child I had thought he would be.

Images of feeding tubes, wheelchairs, and mental handicaps kept bubbling to the surface of my mind. The only words I could think of were the lines from a song in the musical Aida--

“Is it written in the stars?

Are we paying for some crime?

Is this all that we are good for— just a stretch of mortal time?

Or some God’s experiment in which we have no say, in which we’re given paradise, but only for a day?”

I listened to that song and cried the whole way home. I cried all the way into the house. Cried telling my family. And I couldn't stop crying. It was a shock. It was a punch in the stomach. What was merely ‘interesting’ to our neurologist was completely devastating and life-changing for us. After the tears and the wallowing in my journal, I came to some sort of peace. I wrote, “He was born LIKE this, and I was born FOR this. This is divine design. This is not a tragedy.”

Then in big red letters, I wrote again—

“THIS IS NOT A TRAGEDY.”

I didn't come up with that-- it was something whispered and pressing directly on my soul. I wanted to believe it. I knew it wasn’t coming from me. It was from God. So I wrote it hoping that maybe one day it would be true, even if wasn’t right now.

And you know what?

We thought it was a tragedy at the time. Well, I did at least. My husband took it in stride after the initial shock. He has a brother with down syndrome so for him, special needs weren’t life-changing or scary. They were for me. That was when I learned that we grieve very differently. That was hard. I felt very alone (and angry) grieving the loss of my son— or grieving the loss of the life I thought my son would have. I honestly felt like I had lost a son not to death— but to disability.

I grieved for months. Read more about that here.

We didn’t know it then, but Payson’s diagnosis was an act of mercy. It was soil-softening for the storm that was coming.

Storms

Ten months after Payson's diagnosis and two months after our second child Kalea unexpectedly died at seven months old, my dad sent this letter out to the family (this an excerpt)—

“It’s stormy and rainy today in Texas, and as I watch the rain come down …I remember that it rained for a week up until the day that we laid our little Kalea to rest. I have always liked storms and rain and never quite understood why people don’t like the rain— or see it as something bad, or to be avoided. True, rain can bring floods and it can create mud …but it also brings life and creates new rivers and streams and takes life-sustaining water to places unreachable before the storm.

…This morning we were listening to The Piano Guys and I had the thought that their music sounds much sweeter and deeper now. John Schmidt, the pianist in the group, lost his 21 year old daughter in a hiking accident four years ago. She was missing for several weeks. As I listened to John playing the piano I realized that he could now play in a way that would have been impossible before his beloved daughter died, sweet music from bitter tears. None of us want storms or driving rain to come into our lives and storms can be terrifying and overwhelming, but we must remember that rain brings life and storms bring different perspective after the violence of the wind has been calmed by the rising of the sun and the drying of the grass.

…When Kalea passed I sat outside in the rain the next day for about six hours. I didn’t care if I caught cold and died. I was a little cold-- but I didn’t feel it, I didn’t feel anything but the absence of all human emotion that can only be described as broken and numb. Each day I watched the rain and wondered if the sun would ever shine again.

A few days later I found myself standing in Kalea’s grave doing some final preparations for her burial. As I stood there, I reached down and scooped up some earth and realized that this task of digging the earth would have been nearly impossible without the storm and the rain that had softened the hard Texas ground. A little miracle...

I looked around the graveyard and at each headstone, most well over a hundred years old and I remembered that over 60% of the headstones belonged to children. I knew they were with Jesus and their loved ones. I put both hands on the edge of the grave and blessed the entire cemetery that it would be a place of peace until the SON rose again and these children would be able to run and play in their little bodies again through His power.

I felt the first glimmer of hope and peace that day, standing in my granddaughter’s grave. I knew that Kalea and all these little ones were alive in Christ and that they were not dead— just separated from us for a time, and one day at the end of a great storm and some rain, I would see her again.

Now when I see a storm, I see hope and opportunity. When I feel the rain on my face I think of my Father and my little granddaughter – both of whom are forever connected to rain and storms… and hope, promise and love.

Here’s to a little Angel who blessed our lives for seven short months and will continue to bless us in ways unimaginable moving forward with her. I love you Kalea.

Here’s to the rain, wind, storm that allows us to sing songs of beauty through the rain of tears on cloudy days while surveying green fields that go on forever.

May God bless us with the ability to prosper in the storms of life and never forget that the rain, like Christ brings life to us all.”

Soil

After my dad sent this, David and I reflected back on the days of rain after Kalea's death and the experience of digging Kalea's grave. Being able to dig her grave was something David knew he wanted when we were deciding where to bury her. There was something primal, cathartic, healing, and bonding in that last earthly act of love as David and our brothers and fathers dug together.

It was really hard work. It took a long time, and the ground was hard. Like my dad had said, digging her grave might have been impossible without the rain. Those awful dark days of rain had softened the soil and made it possible to dig.

As we talked, David made an incredible connection. “You know, Payson's diagnosis, everything with his seizures, it was all like the rain-- softening the soil preparing us for losing her.”

Payson's diagnosis wasn't the tragedy-- it was just preparation for the tragedy of losing our daughter.

It was the Lord softening the soil.

How much harder would her death have been if I hadn't already experienced how differently David and I grieve? How alone I would have felt and how angry! Because of Payson's diagnosis, I already knew what it was like to bury the life I thought I was going to have with my child. I knew what it was like to feel so different from other mothers. I knew how to grieve. And most importantly, I knew how to connect with the Lord in my grief.

Payson's diagnosis was a soil-softening act of mercy in so many ways.

Three months before Kalea passed away, I was taking both babies to the chiropractor. As I started backing out of the driveway, I had an impression that I needed to stop and pray for safety. I never have thoughts like this, so I listened. I stopped the car and prayed that we would be safe. Less than 10 minutes later, we got in a car accident that totaled our car.

I was grateful everyone was okay, but so confused. If God knew I was about to get in a car accident, why didn't he just tell me to stay home? I would have listened. But instead, he told me just to pray for safety.

When we made contact with the other car, I didn't even feel it. I'd been driving 50 miles an hour just seconds before the collison. Amazingly, neither of my babies cried. Somehow, God softened the impact. I don't think any of us even felt it.

After pondering that experience for a few weeks, I came to the realization that most of the time, God doesn't stops the wrecks from happening, he just softens the blow. I thought that applied to Payson's epilepsy at the time because I was really struggling with his diagnosis again. But when Kalea died just a few weeks later, I realized that this experience was also soil softening. A precious spiritual pillar that I would be able to cling to after her death.

I'm always amazed at how bare the Lord's arm is in retrospect. What things have softened the soil in your life?