We spent the first autumn season in our new home watching more than just leaves fall.
We watched Emery fall a lot, too.
Kids run and jump and trip and fall every single day. Bumps and bruises happen. So do skinned knees. Our boy was just as rambunctious and active as any other, until somehow he wasn’t.
When Emery started walking funny, we paid attention. Soon he couldn’t run, really. He shuffled and cried. He couldn’t jump or climb. Next he told us his fingers were tickly.
We never saw it coming.
Neither did he. Frustration with a body that used to work just fine turned to self-loathing fast, and it pained our unprepared hearts. What three year old flails on the floor, pummels his own legs and wails “Bad legs! Bad legs!” ?
But he wasn’t wrong, exactly: his legs hurt and they didn’t work very well. The only way Emery knew to express what was happening was to call them bad. He struggled through hard days and went to bed defeated most nights. He reached around your neck and clung to you in tears, asking you to lift him and carry him up the stairs because his own strength wouldn’t hold the weight of one more moment.
Doctors described his condition as hypotonia–low muscle tone. In other words, his arms and legs were weak and his reflexes were poor. Doctor after doctor observed and confirmed these facts, but identifying the cause of it all proved to be far more difficult.
The only constant for him in those confusing days was his physical therapist who was present and concerned. She pushed him and didn’t let him get away with anything, and he worked hard for her. As she worked, we chatted: about when all this started and what Emery was like before we relocated from California to Kansas City; about his arms and legs and the way the change in them shifted something inside of him; about having trouble getting appointments to see specialists; about delays in having tests done; about waiting for results to come in.
She helped him believe he as strong when every other indication screamed otherwise.
Eventually we had updates for her, although none of them held answers. After seeing a slew of specialists, a pediatric neurologist ordered blood tests and an MRI of Emery’s brain, but scheduling delays, cancellations, rescheduling pushed the date from the fall to winter, in the first foggy days of 2019. Watching Emery’s condition worsen while we waited with tied hands made a complicated diagnosis feel inevitable. Hope was hard to come by.
When the results finally came in, the doctor said they “ruled out the bad stuff” but could not say for sure what was causing the weakness. Even so, she did not recommend further testing at that point. “You could opt to do genetic testing,” she said, “but I don’t think they’re necessary.” In her opinion, it was an expensive test that would only confirm what we already knew: that Emery was weak. “Keep going to therapy,” she said. “Call me if it gets worse.”
I remember the struggle to accept the absence of answers as good news. Something deep inside nagged me, telling me there was more to the story. I couldn’t put my finger on what, exactly, and neither could you. So we kept praying.
We lived out Philippians 4:6 over the next months. We posted it in the kitchen and wrote it on our hearts, recited it in the car on the way to Physical Therapy and relied on it in moments we felt too fragile to breathe: “Don’t worry about anything: instead, pray about everything. Tell God what you need and thank Him for all he has done. Then you will have peace, which exceeds everything you can understand.”
When worry tempted us toward despair, we turned our attention to God and reminded Him of what His word said: worry doesn’t add a single hour to our lives (Matthew 6:27). Emery is wonderfully made, just as he is (Psalm 139:14). We are confident we will see the goodness of God in the land of the living (Psalm 27:13).
And we remembered to say thank you for things we did have: like access to doctors and tests and physical therapy. We thanked God for “ruling out the bad stuff” and asked Him to pinpoint the truth. We thanked Him for opening the doors to doctors who would help to do that, believing He would do it.
We hung on for dear life to every promise penned by His voice long ago: that He gives strength to the weary and gives them new strength when they are tired. Fear and confusion wiped us out. Sorrow hung heavy in our hearts, and we discovered we were weak as well. We clung to God because we needed someone to carry us, too.
Those fragile days wore on silently. I ran out of words, so I stopped writing. We prayed. Not much changed. Emery continued Physical Therapy and started Occupational Therapy, too. A few more months passed. His 4th birthday crept up.
It was right around then–about a month before his birthday–a friend got in touch with me, telling me God put it on her heart to fast and pray for physical healing in our kids, and she asked us to join her. We did. We fasted and prayed for the month leading up to Emery’s birthday, asking God for healing. Believing for it. Contending for it.
During that time we learned our local school district has a preschool program that offers Physical Therapists and Occupational Therapists in the classroom daily, working with students who qualify for enrollment based on developmental delays. Emery had a diagnosed and documented gross motor skill delay, and we thought for sure he would qualify for the program. This discovery felt like an answer to prayer.
So we trooped him down to an eligibility assessment, confident this was the open door that would lead to the help Emery needed. An auditory test was performed as part of the test, and it showed one of his ears was closed. “We couldn’t get a reading on it,” they said. “It’s blank, flat. There must be some fluid stuck in there, maybe due to an infection or something. Go see his doctor, get some medicine, and come back when it clears up.”
We went right away, but the doctor didn’t find a thing. No fluid. No infection. His ears appeared to be in perfect health. She asked if Emery had trouble hearing lately, if he was complaining about ear pain, or had given any other indication that something was “off” with his ear.
He had not. No physical evidence presented itself to explain why Emery’s ear would have been closed that day.
“But since you’re here,” the doctor said, “let’s talk about his legs. I saw the test reports. Everything looks good. How’s he really doing, though? How are you doing?” We filled her in: things were stagnant and we didn’t know what else to do except for try to get him the support he needed to cope with his new reality.
She nodded as she listened and smiled as she told us about a friend of hers–a pediatric neurologist. She offered to text her that day to pick her brain and see if she had names of doctors anywhere in the nation worth talking to, specialists she would take her own children to see if circumstances warranted a visit. An hour later, we had three names. One was only 15 minutes away.
Emery got an appointment with him fast. The doctor got down on the ground with him: watched him, talked with him, asked us lots of questions. He confirmed the what, but wasn’t satisfied without the why. The previous tests were a good start, he said, but he wanted to dig deeper with a spinal MRI and a lumbar puncture to test the fluid in his spine.
More big tests involving more anesthesia and risk of finding out particularly bad news. We took deep breaths and nodded our agreement, certain God paved the path toward this moment and carried us straight to it, roundabout and unforeseen as it was. We hadn’t known to ask for these tests.
The big day came quickly. We hardly waited at all. Emery was so small, and I felt unsteady as I watched them prep him for the procedures. He was brave, until he wasn’t. He did great, until he didn’t. The line between those two places was fuzzy that morning. He cried and I cried too. Afraid, he clung to me, and I clung to him too. I signed a lot of papers as I rocked him back and forth, silently praying in groans until they slipped my boy from my arms and rolled him away. I settled myself in for a long wait, alone.
The clocked moved slowly. I tried not to panic as too much time passed. At least we waited together: we held hands. We sipped coffee. We prayed alone, inside. We watched as families got good news left and right, and we watched as a few got not-so-good news, too. I was hard to be hopeful, but we clung to the belief that the answer was coming.
When the doctor came to find us, he said he had good news: he didn’t find much.
My heart deflated. It seemed like more non-news.
Then he said this: he did see something small. There appeared to be remnants of a syrinx in Emery’s spinal cord. The doctor suspected that this small sac of fluid put pressure on his nerves and caused low muscle tone and weakness in Emery’s extremities. The interesting thing is this: the doctor said it looked like it was resolving.
He said most often, syrinxes will get larger over time and go on to cause more problems. Indications on the imaging suggest the reverse was happening in Emery’s body, so he encouraged us to keep up the Physical Therapy and give him swimming lessons for low-impact strengthening exercises, and to come back in six months if Emery was not improving.
That was nearly 12 months ago.
After we left the hospital that day, Emery flat out told us, “God is healing my legs.” At first it seemed he was internalizing the belief we modeled for him every day, but then it started to actually happen.
Emery’s body improved after that: slowly at first, but he gained momentum fast and continues to get stronger every day. He runs. He loves to run. He jumps. He climbs. He pedals a bike. A year ago we wracked our brains trying to figure out how to add an elevator to our house, should the need arise, but today we celebrate every time Emery goes up and down the stairs unassisted and stare at him in awe as he runs and runs and runs.
We don’t know if the suspected syrinx caused the weakness or not. We don’t know if there is more to the story or a deeper issue that will arise later. Today, what we do know is this: after we fasted and prayed, God opened the door to a doctor who intervened, and Emery’s strength improved dramatically. He progressively continues to make big strides. Other kids may still run circles around him, but we see a change–a shift inside and out–that renders things undeniably different.
Walking through all those months with Emery was hard. Doubt told us a good God wouldn’t let bad stuff wouldn’t happen to our boy. Pain and confusion tempted us to quit believing God was good. Sometimes doubt still whispers, “It’s too good to be true.”
But no matter what our feelings tell us, we stand firm in this truth: God is always good. Circumstances sometimes aren’t.
We feel the feelings and cry the tears and battle our way through hardship, partnering with the Lord as we hold on to the promise that He carries the weight of our burdens and wrenches doors wide and make healing happen here on this side of heaven.
We know physical healing doesn’t always happen. We don’t know why God sometimes heals and sometimes doesn’t. But we contend for it because we are confident it could. We believe one way or another, it will.
Emery did not end up qualifying for the special needs preschool: their report stated they did not find evidence of a developmental delay, gross motor or otherwise. In fact, the only thing deemed “not normal” that day was a closed ear that turned out to be an open door to the doctor who offered us answers.
Emery’s closed ear is evidence God’s ear is open.
“Did you know God is the strongest mom?” Emery asks me. “I am really strong, but God is even stronger than me.”
Truer words perhaps have never been spoken.
He is the one who is strong, and He is gracious enough to follow through on His promise to make us strong too.
Do you not know?
Have you not heard?
The Lord is the everlasting God,
the Creator of the ends of the earth.
He will not grow tired or weary,
and his understanding no one can fathom.
29 He gives strength to the weary
and increases the power of the weak.
30 Even youths grow tired and weary,
and young men stumble and fall;
31 but those who hope in the Lord
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.
Isaiah 40: 28-31 (NIV)
Hulk Smash Soup (Or Split Pea Soup)
Emery is in a serious Avengers phase while he was walking through all those months of medical frustration. He seemed to like Hulk in particular–perhaps for obvious reasons? Hulk was brawny and tough, able to smash any obstacle he faced. Nothing was too big to frighten him away from facing it. And truth be told, Emery was rarely scared in that season of frustration. Angry, sure–but hey, so is Hulk. We served Split Pea Soup a lot last winter and over time it became known as Hulk Smash Soup because it’s green like Hulk, and green things make our bodies strong.
- 2 Tablespoons neutral oil
- 3 medium yellow onions, coarsely chopped (about 5 cups)
- 1 pound dry split peas, rinsed and picked through to remove any unwanted debris, such as small stones
- 6 cups chicken or vegetable broth
- 1/4 cup lemon juice
- 1/2 teaspoon fine sea salt
- Assorted toppings for serving, if desired (bacon crumbles, chopped ham, cheese shreds (vegan or dairy))
First, chop the onions. They can be coarsely chopped—no need to spend time making them perfect or uniform. Heat a large pot on medium-high. Add the canola oil and onions and give them a good stir. Let them cook for about 5 minutes or so, until they’re soft (but not browned). In the meantime, rinse the split peas and remove any small stones that may be present.
When the onions are soft, add the peas and 3 cups of broth and stir. Cover the pot, reduce the heat to low and simmer for 45 minutes, or until the peas are soft.
Remove from the heat. Using an immersion blender, puree the soup until smooth. Add another 3 cups of broth along with the lemon juice and salt and stir to combine.
Serve with a smattering of your favorite toppings–ours is crumbled bacon!