diagnosis
On Sunday, I felt the trembling, electric surge of deep knowledge, my breath catching in my throat as I held Zoe’s hand—too thin, the bones too visible, the skin cold and wrinkling. I fumbled with Adam’s glucose meter, putting in a strip. I changed the lancet in the tester so that I could prick her finger, watching her lay her head on Kevin’s shoulder, listless.
Twice now I’ve hugged and loved and touched a starving child…my own.
Pictures of starving children have always made me cry—all those bones jutting out in sharp angles, the dead look in innocent eyes. I looked at Zoe last week and her shoulder blades stuck out too far, cutting into the air like apostrophes around the moment—another moment that would paralyze life, steal our breath. Her arms and legs looked like fine lines, the bones too easy to imagine beneath the skin. Had she grown too tall for the scant amount she ate? And then there was the giant red flag waving in front of my face: she’d been drinking an unusual amount, more than it seemed she should. And she’d been tired every day, even on days when she’d slept in till the last possible moment before school. The signs silently added up, counting down to explosion, nothing ever the same.
We’d had discussions, she and I, about thirst. When my brother discovered his diabetes at fourteen, he’d said that he couldn’t get enough to drink. “It’s like you can’t quench your thirst,” he’d said. Whenever I remember him saying this, I always think of Jesus, sitting with the woman at the well, telling her,
Everyone who drinks this water will be thirsty again,14 but whoever drinks the water I give them will never thirst. Indeed, the water I give them will become in them a spring of water welling up to eternal life (John 4:13,14)
I had asked Zoe if she felt always thirsty, unable to quench her thirst. “No,” she’d said several times in those preceding weeks, “I just like to drink things.” The truth, she later admitted, was that she knew, deep down. She felt it, something very wrong in her body, but she didn’t want to know, didn’t want to acknowledge her illness. How many times, thirsty and soul sick, have I tried to quench my need with everything except the living water, not wanting to acknowledge the truth that something has gone badly wrong in my heart?
I told her, the first time I noticed her drinking so much, that I should test her blood sugar. “No, no,” she said, shaking her head, tears falling hard.
“Why not?” I asked, surprised at such an extreme reaction. “You’ve seen Adam test a million times. It’s not a big deal.”
“Because I’m okay,” she said. “There’s nothing wrong. I’m fine. I don’t want you to do it.”
“But if that’s true, the test will show that and I won’t need to feel concerned when you drink so much.”
“No, no, please no,” she begged. “I really don’t want you to. I’m not thirsty all the time. I’m fine.” Really, she knew she wasn’t. But just like the rest of us, she had the odd notion that if she just ignored the truth, if she just didn’t know, it wouldn’t be so. I had felt the same way, years ago, before Riley’s autism diagnosis, staring at all those titles on shelves in the bookstore, the word autism a glaring truth, knowing and yet not wanting to know, refusing to read lest it force acknowledgement.
So I waited, trusting her, wondering if maybe I was too sensitive, too aware, too trained to expect the worst.
But then she lost weight. Her forehead looked too hard, too pronounced, her wrists too small. She looked like the starving child she was, but she hardly seemed able to eat. And then Sunday, her face looked white, her lips gray. She insisted that she was okay, just tired. She tried to smile, with little success. She wanted to play but seemed only able to sit. For a while, she went out and tried jumping on the trampoline with friends, who later told their mom that she had fallen and fainted, not responding for a few moments when they called her name. They said that she finally opened her eyes and then left them, going to sit on the steps. This I had missed. But when Zoe came inside, looking at her pale, gaunt face, hearing her labored breathing, Kevin and I insisted that she let us test her blood sugar. “Do you feel out of breath?” I kept asking her. She thought about it, breathing heavily, and then said each time, “No, not really.”
The first time, the meter wouldn’t even give us a number. It just read, “HI,” which I knew meant above 450. A small sound escaped Kevin’s throat–knowledge, grief, stunned acceptance. “Test it one more time,” he said to me. When I did, the number blinked like an exclamation point: 599. Again that sound, from Kevin’s lips, as we looked at each other, knowing. Our baby girl has diabetes.
I called our pediatrician, who is also one of our best friends, and he sighed. “With a blood sugar that high, I’d tell you to take her to the emergency room even if it was Wednesday at 2 o’clock.” Zoe didn’t want to go at all, still resisting knowledge and treatment. Why is that the way we all are, not recognizing how sick we really are until we’re well, not wanting to know, resisting the path to healing? “I’m fine, I’m okay, I don’t need help,” we all want to say. Why is it so hard for us to see that this is the Enemy’s way, his best lie, that we are okay and not dying, that we don’t need redemption and healing, that we aren’t starving from the inside without the Spirit to transform?
Zoe’s body had begun slowly consuming itself, burning up her fat stores in a desperate effort to fuel its work. Without insulin, all the nutrients from her food remained stuck in her blood, never making it tissue-deep, like all the wisdom in the world that never leaves the mind to touch the heart without the Spirit. Her body’s best effort to save itself actually only made her very sick, as the fat burning filled her body with toxic ketones. We simply cannot heal ourselves. Again God’s truth, woven even in our flesh.
When Zoe accepted that we were taking her to the hospital, seeing the resolve on our faces, she wanted Kevin to drive her. I understood this, remembering that as a little girl, I always wanted to crawl into my daddy’s arms when I felt weak and ill. Zoe had invited a friend over after Sunday morning worship for a play date, and her friend sat with us in the living room, observing the unfolding. Zoe looked over at her friend, afraid, and said, “I want her to go with me.”
I called her friend’s mom, my close friend, who agreed with this arrangement. It occurred to me that God always provides, always pours out grace, preparing in advance for the things we hardly could’ve anticipated. I sent them out the front door with Kevin. I took Zoe’s face in my hands before she walked away from me. “God is with you,” I said, holding her gaze firmly with my own. Even when I don’t know what’s going to happen, I know that this is truth. Always, always He is with us. Kevin looked back at me as they left, stunned, still feeling like he’d been knocked down and left without breath. “Are we doing something wrong, here?” He half laughed, shock trembling deep in the tones of his voice. Then, as the Spirit testified, as if in an instant Kevin heard Christ answering the disciples who’d asked a similar question about a man born blind (John 9:1-3), he changed his question, not really asking it so much as expressing a heart surprised. “I mean, how much glory could God want to get from one family?”
I smiled into his eyes, sharing his shock, and then I sent them on their way, promising to meet them at the hospital as soon as I had made arrangements for Adam and Riley. I started making calls, alerting our family and friends. Again I saw the outpouring of grace, as our best friends dropped everything else to help us, each in their own way. God always provides, pouring out His gifts, so much grace like arms wrapped tightly around us. Our father embraces us with strength as we drop over the edge of another of life’s cliffs.
I moved through patterns I knew, making Adam supper, counting carbs, helping him with injections. Riley had spent the afternoon with a friend, and I called her mom to say that I was on the way to pick her up, explaining the situation. “No, you’re not,” she said. “I’ll bring her home. But could I feed her supper first, maybe keep her a while longer?” Again, the grace.
All the way to the hospital, I prayed. In these moments, I’m always so grateful that the Spirit intercedes when we can’t speak. In my mind, I saw the Savior, Zoe’s Lord as well as mine, touching her with healing hands. The only thing I could say in words was “Lord, please help.” I still couldn’t breathe.
Kevin told me later that Zoe spent the trip to the hospital telling him that since God was with her, she did not need to be scared. “If I didn’t know God was with me, maybe then I should be afraid,” she’d said. “But I know He’s with me.” One of the first scriptures Zoe ever memorized, writing it on her heart, echoed this confidence,
I am with you and will watch over you wherever you go (Genesis 28:15).
So, when I walked into the emergency room and found them there, Zoe smiled at me, peace having already replaced the initial fear I’d seen in her eyes. One IV already snaked out of her arm, delivering fluids. I remembered Adam at two, hysterical as they put in the IV. He’d been so dehydrated they’d been unable to find a vein. Zoe sat still as they put in a second line for drawing blood, patient, quiet. Her friend sat in a chair by the wall, watching. By the time I made it there, every other possibility had been ruled out. Diabetes, without doubt.
A friend poked his head in the door. Again, the grace. They were two doors down, in with their baby girl, whom they’d brought in with severe symptoms. She had a virus it turned out, but they needed to be sure. These same friends had been in the emergency room when Adam was diagnosed with diabetes. The wife had been in the pediatrician’s office with another daughter the day I brought Riley in after her seizure, just before yet another diagnosis. “We really have to stop meeting like this,” I told them. When our friend left to find supper for his family, he stopped in to see if he could pick up food for us too.
They transferred Zoe to the pediatric ICU for observation until the ketoacidosis resolved. She wanted her dad to stay the night, so I left to relieve friends who had cared for Riley and Adam, tucking them into bed, once more sharing our history when we needed them most.
I couldn’t sleep Sunday night. I tossed and turned and prayed, my heart still at the hospital with Kevin and Zoe. On Monday, I got Adam and Riley off to school, the morning a blur of shallow breaths. I packed a bag so that Kevin could shower and left again for the hospital. Two days passed this way, and I lost track of time, energy, and routine.
It seemed that for Zoe, immediate needs were harder than the diagnosis itself. She’d not eaten since lunch on Sunday, and as insulin dripped into her body and she began to heal, she recognized the gnawing hunger of starvation. When they told her that she’d not be able to eat breakfast on Monday morning, she broke down. “I just want to eat,” she pleaded.
“I know,” I said, stroking her forehead. “They’ll let you eat as soon as they can.” Nothing hurts like watching my child hurt and being completely unable to help.
When they told Zoe she’d have to stay until sometime Tuesday afternoon, she wept again. She’d hardly slept Sunday night, and she could barely move for all the tubes and monitors attached to her. She was physically and emotionally exhausted. At her lowest point, Zoe cried bitterly, angrily. “I am never coming here again,” she said with every bit of fire in her spirit. “Even if someone says they’ll take me, I.am.not.coming.back.here. I just want to go home. I can’t sleep here. I don’t want to be here anymore.”
Kevin and I sat with her, touching her, wiping away her tears. “I know this is hard. It stinks,” I said, “but you have to work to think about this the right way.” Together, we urged her to choose another perspective. “You can think, ‘They won’t let me go home today,’ or you can think, ‘I get to go home tomorrow!'” We told her. I asked her to tell me, right in that moment, three ways that God had shown her love, pouring out His gifts even here, even now. Understand, I’m no Pollyanna. But this life is war, and I’m battling for my daughter’s heart.
“I can’t,” she said, shaking her head, tears sliding off of her cheeks.
“It’s always hard to see the good when everything seems so bad,” I told her. “The Enemy doesn’t want you to think about this in a good way. You’ve got to fight.”
“I know,” she said to me. “I just can’t.”
“You can. But first, you need to ask God to help you have the right attitude.”
She closed her eyes and said, honestly, “God, help me. Help me have a good attitude. And please, help me go home.”
When she opened her eyes and looked at me, I said, “Okay, tell me three ways God has blessed you today.”
I had already named a few ways, to illustrate it possible, even now. She half-smiled, groaning. “You already took all mine.”
I laughed. “I could name 25 more. You need to name 3. Of your own.”
“But you already said them.” Oh, the resistance. How difficult it is to break free of the stronghold of ungratefulness. It imprisons the soul but blinds us to the iron bars. Ridiculously, we resist freedom from misery.
“But I’m not the one having the issue with my heart,” I said, smiling into her face. She grinned. She couldn’t help it.
“Well,” she started, reluctantly. “I’ve been able to watch movies, and that’s a treat.”
“Good. That’s one.”
“And…I get to go home tomorrow.”
I conceded this one, even though the example had begun the conversation. “Okay, and?”
“I got to eat lunch today. And I get to eat supper and breakfast.” It’s amazing how true hunger illuminates the simple profound gift found in having a meal. This is precisely why eucharistia, “thanksgiving,” is such a perfect word for the Holy Supper. It is a feast gifted the truly starving.
By the end of this listing, Zoe’s eyes were swollen but dry. Again, she’d found peace, and as the afternoon progressed, she found her joy again too.
I’ve joked in the last few days that we now have a perfect countdown to an explosion: 4 diagnoses, 3 children and 3 medical id bracelets, 2 with autism, 2 with diabetes, 1 with epilepsy.
4…3…2…1… Boom.
But in truth, ours is so much more than the kind of explosion I joke about. I won’t deny that all this means another layer of chaos and more desperate need for margin, more to learn, more to manage, more to make me feel the reality of my own inadequacy, still more to help me see how powerful and faithful and tremendous is Elohim in our midst. When we came home from the hospital on Tuesday afternoon, I felt so physically and emotionally exhausted I could barely move. I am confident that without the love of a God who is always good, I could not take another step.
But the truth is, we have the the perfect countdown to an explosion of a very beautiful kind, the kind we’ve known before in so many tangible ways: the unfathomable, splendid boom of God’s glory, clearly seen.
As the hours passed these last difficult days, grace mushroomed. Friends wrote, called, prayed, visited. They brought gifts and hugs and Presence, pouring out love even as we hungered for it. Mom flew in to help me, recognizing as I did that besides physical depletion, we’d face appointments and a learning curve when we brought our Zoe home. A close friend picked Mom up from the airport and even brought a snack, realizing somehow that Mom would not have eaten. Moments after I got an afternoon text, “What had you planned to fix for supper tonight,” a close friend showed up with a casserole. Such love, such thoughtfulness, so many friends blessing us in very different ways. It’s beautiful really, the way God pours out gifts in our most difficult moments, the way He touches us and helps us breathe again, one breath at a time.
And oh, how we want to bring Him glory. Surely no one could look at what He’s done for our interesting little family and not see clearly His startling love and the abundance of His wealth. Truly, all is grace, and we are among those most blessed.