The Holy Week I Didn’t See Coming

We Got the Diagnosis on Good Friday. It was Autism.

This post comes to us from Kristin Thomas Sancken:

Christians focus on Good Friday, Christ’s death, and Easter, the Sunday when Christ’s wounded body emerged from the tomb glowing and whole. But very little is said about Holy Saturday, the time in between these two high holy days. I myself had never really thought about that day until three years ago, when I spent Holy Saturday, doing what I imagine the disciples did, hiding and crying.

We found out on Good Friday. In an office on the second floor of a medical building with beautiful views of the Blue Ridge mountains, a highly recommended psychologist rubbed lotion on her hands as she delivered us the news. This psychologist was the sixth expert my husband Caleb and I had seen about our 8-year-old daughter, Lucy.

For years we saw gastroenterologists, neurologists, social workers, audiologists — a whole team of experts to figure out why Lucy did things I’d never seen another child do. She seemed to actively hate breastfeeding, only feeding for long enough to satiate and then pushing away from my warm body. She struggled to gain weight and fell completely off the growth curve by the time she was six months old. In preschool, she got a headache and threw up after any birthday party she attended. In kindergarten, she failed her hearing screening twice, only to pass it two weeks later. By first grade she was reading at a 7th grade level, but couldn’t ride a bike or catch a ball. She was a constant source of both awe and worry.

But that worry changed to another emotion when the psychologist looked up from her notes and said, “Has anyone ever mentioned the word autism to you?”

The word gaped in my mouth. I tried to focus my eyes on the line where the mountains meet the sky, but it blurred. Caleb put his hand on my knee as tears came to my eyes. He wrapped his other arm around my shoulders.

“Yes, actually, but I didn’t believe it,” I said through short, contracted breaths, trying to sound reasonable and even-keeled. “Her preschool teacher suggested we have her evaluated, because she didn’t make eye contact. But we thought the environment of the school was just too intense for her, too academic, so we pulled her out.”

“The story you’re telling me is consistent with autism,” said the psychologist. She went on to explain how autism looks different in girls, particularly smart girls like our daughter, which is why it had likely evaded so many practitioners. When she looked up she saw my dripping mascara, and running nose. I had silently cried through her whole explanation.

“It’s not a horrible thing. It’s a gift,” she said, passing me a tissue.

“You don’t understand,” Caleb said. “My wife specifically prayed against autism when she was pregnant. This is devastating for her.”

I actually prayed for two things when I was pregnant with Lucy — blue eyes and no autism. The first one was petty. I knew it was petty at the time, but it was genetically possible given that both Caleb and I had blue-eyed grandparents. The second one I prayed because I was afraid. When Lucy was born, I was a year into a Master’s of Social Work program. In my child development class, I learned about autism and how to identify it. I rubbed by growing belly and prayed, “Anything but autism, Lord.”

Of all of the things that could affect a child, I thought autism would be the most difficult to interact with. How would you know the child loved you? How would you endure hard times that naturally come with parenting without an emotional connection? An autism diagnosis felt like a betrayal. It felt like God himself had said, “No, you cannot have the desires of your heart. You cannot have the life you thought you deserved. You must face this greatest fear.”

That Good Friday, I curled on the plump couch in the psychologist’s office, and I cried a deep, ugly cry that I felt embarrassed for the psychologist to witness. Good Friday surrounded me. The dark clouds. The weight. The sinking hopelessness. A diagnosis. A kind of death.

I imagine that when the disciples realized Jesus, a man they had lived their lives for, had truly died, they felt like I did. I imagine they felt this same soul crush, the same questioning of the purpose of their lives. I imagine they did what I did the day after Lucy’s diagnosis. They hid. They found whatever safe place they could find and they cried. They cried in bed, they cried in the shower, they cried into their cereal — or whatever disciples ate for breakfast. They created a cocoon of grief and nestled into it, kept company by their own doubts and regrets. What else is there to do when nothing makes sense anymore?

On that Holy Saturday, I crawled out of bed to attend the Easter Vigil. I hid in the back so the dark circles beneath my eyes wouldn’t invite questions. The pastor read from Ezekiel 36:26: “I will give you a new heart and put a new spirit in you; I will remove from you your heart of stone and give you a heart of flesh.”

My fleshy heart was falling apart at the seams, like ground meat. It was trying to stay in a heart shape, but it was collapsing like a fleshy hamburger. I wanted a stronger heart, a stony one. I remember praying to God that night, “Can you make this hamburger a little more like a heart, God? A little stronger? This hamburger heart needs Your divine gaze.”

Easter morning should be joyful. It should be a time when we realize we live in an Easter world, one where literally anything can happen. God can be man. Man can rise from the dead. We can be whole.

But I felt empty. Like a tomb. I went through the motions. I went to church. I hid Easter eggs. We ate an Easter lunch. All the while, holding back tears.

The new lens of autism allowed me to see, for the first time, who my daughter really was.

She wouldn’t wear an Easter dress, just cotton leggings and a t-shirt. The dress was too itchy. Her eyes grew large and panicked when her little sister started screaming in excitement about Easter eggs. At lunch, she refused to eat any food unless it crunched. Cooked or soft food went untouched. She wasn’t just a sensitive kid, or a medical mystery; she was autistic.

I realized maybe this is how the disciples felt too on Easter Sunday. Not joyful, but like they finally were seeing Jesus for who he really was. More a sense of wonder that they had missed the signs all along. Jesus was not just a good rabbi or teacher, but God. While Lucy is not Jesus (and thank God for that), I recognize this feeling. It’s the melting of hubris. The dissipation of thinking you have all the answers. The realization that the answer is right in front of you, if only you had taken the time to observe it for what it was.

The week after we found out about Lucy’s diagnosis, I went to see her in a school concert. Hidden in the middle of the bleachers, we told her to mouth the word “watermelon” repeatedly when singing felt like too much to handle. I smiled at her and gave her double thumbs up from the audience. She pouted her lips and narrowed her eyes at me. She looked every bit as pitiful as a dog in a Humane Society ad. Afterward, in the walk back to my minivan, I stumbled upon her class walking out of the auditorium in a straight line back to their classroom. She broke from the line and ran so fast and so hard into me that I almost fell over. Her arms wrapped around me. “Mommy!” she cried. Pressed tightly against me, her chin on my belly, she looked up at me with her dancing hazel eyes. “Please don’t go.”

Her love was of an intensity that threatened to overwhelm me. I realized that all of my fears about autism, that she would never love or feel emotion, were wrong. They were based on what I thought autism was, and not on reality.

The disciples likely felt this way, too. They likely thought that their life was easier before Jesus came into it. It was easier to be a fisherman than to be introduced to this overwhelming love that also had the capacity for incredible grief and pain. Likewise, my life was easier before Lucy came into it. I had far less worry and pain. But, I also had far less love.

To be fully human is to embrace these emotional extremes — love and grief. The miracle of Good Friday is the realization that embracing these terrible, almost unfaceable realities of diagnosis or death is what God did by coming in human form. On Good Friday, we see that our God not only knows the realities of death and pain but has lived them. As an infinite being who can see both past and future, God knows the final outcome. God could have had Jesus rise from the dead right away, on Friday night or Saturday morning, a sort of reassuring “Hey, don’t be sad, look! Everything is okay! He’s risen!” But God knew that between the pain of Good Friday, there must be a buffer, a Saturday, a Sabbath, in which to hole up and cocoon in grief and confusion to order to truly feel the immense joy and inexplicable reality of Easter.

The writer Stina Kielsmeier-Cook says, “Holy Saturday isn’t just a day we remember once a year but the name of a real emotional state for those of us who are waiting for the kingdom of God, for any sign that God cares and is present and wants to fulfill all those covenantal promises.” Isn’t this what so many of us have felt during yet another Lent in quarantine? The days won’t end. The bad news won’t stop. Our plans are futile. The light at the end of the tunnel doesn’t seem to be getting any closer. We need God to fulfill His promises. We must trust, even in this moment, that God will fulfill His promises, and that life is what is to come.

subscribe to the Mockingbird newsletter


4 responses to “The Holy Week I Didn’t See Coming”

  1. Sam Bush says:

    Kristin, this is so incredibly powerful. Thank you!

  2. Grace Leuenberger says:

    This was a deeply touching piece, Kristin. These lines really moved me: “It was easier to be a fisherman than to be introduced to this overwhelming love that also had the capacity for incredible grief and pain. Likewise, my life was easier before Lucy came into it. I had far less worry and pain. But, I also had far less love.” Thank you for sharing.

  3. Christina says:

    Thank you so much for this. The first year I identified as a Christian I was baptized on a Good Friday, and I remember Holy Saturday so clearly and wanting to ask everyone if the church also recognized this as the worst possible day on Earth, as it was the day Christ was dead all day. No one seemed particularly eager to dive into this existential tomb with me at the time. Thank you for your reflections!

  4. Drake Richey says:

    What an amazing reflection. Thank you!

Leave a Reply

Your email address will not be published. Required fields are marked *