A Good Run

This week we did something that seemed completely unfathomable a year ago. We went on our first-ever family vacation. We loaded up all eight Blounts in our Suburban and headed to New Mexico for the Vineyard Southwest Regional Conference followed by a couple days hanging out in Santa Fe. The frequent comment Brian and I shared throughout the week: “I can’t believe how well Tyler is. We haven’t seen him like this in nearly two years!”

On September 9, 2012, Tyler started burping. That simple burping quickly sucked us down a tumbling abyss that passed through multiple hospitalizations, a boy’s body covered in bruises from uncontrollable motor tics, a loss of ability to speak, a shroud of psychotropic medications, and the sinking nothingness of answerless doctors with no better explanation than the stunningly inadequate diagnosis of “severe Tourette Syndrome.” Despite a dedicated neurologist marked by compassion, tenacity, and creativity, at the bottom of the abyss was her suggestion to ship our son off to a psychiatric hospital. Shipped off to oblivion.

Then we met a man. A man named Dr. Peter Stanbro. He pensively observed a thrashing, shouting Tyler whose tics had robbed him of the most basic elements of existence like sleep, food, and language. Dr. Stanbro yelled a question at me. I yelled my answer. Tyler strained to hold back his shouts so that we could hear each other but soon succumbed to the powerlessness of his ill brain. A hint of sadness and thoughtfulness in the psychiatrist’s eyes was followed by another yelled question, another yelled answer, and a pause that seemed to last an eternity. God is still in control, I reminded myself, even though no doctors know how to help my son. Then these shouted words changed everything: “I know what this is. And I know how to fix it.” 

Bruised from months of false hope and false diagnoses served by well-meaning and equally bewildered doctors, I was too wounded to put too much faith in the man’s words. Nonetheless, a spark of hope was slowly kindled to flame as the following weeks—slowly, painfully slowly—revealed minute signs of improvement. Tics which would tumble over before the previous one subsided slowly displayed pauses. Seconds. Then minutes. Then words came. “I want an X-Box.” 

The transition wasn't smooth, though. During the interlude between “I know how to fix it” and “I want an X-Box” rested the seedbed of disillusionment and sorrow which spawned the entangling weeds of anger, fear, and aggression. Granted, Tyler’s disease (PANDAS) can cause personality change, but so can months of inability to control one’s body, mouth, or brain. Our patient, reliable, and compassionate boy lashed out in panic and fury, and he handed us a defiant, petulant, bruised child we were unfamiliar with. 

The following months were filled with long stretches of slow, tedious improvement interspersed with memorable breakthroughs. I remember the first time he walked into his 5th grade classroom on his own after weeks of being dragged. I walked a few paces in front of him as he belabored every difficult step. After he tearfully slipped into the classroom with the teacher’s patient coaxing, I waited till I rounded the corner to throw my hands in the air triumphantly then excitedly stop at the counselor’s office to exclaim “HE DID IT!!!” A few months later, Brian and I were up at midnight with another teary Tyler as we talked about why food was so scary. He hadn’t eaten anything solid for six months. OCD from PANDAS had robbed him of the joys and communion of food, and he reclaimed a piece of himself the next morning when he said, “I’ll eat one bite of applesauce.” Again, as soon as I was out of Tyler’s sight, my hands shot to the air in thankfulness. Another few months passed till the next tearful conversation, this time about touch. We made a bargain. Tyler wouldn’t have to participate in the required ballroom dancing class at school if he would instead let a family member hug him once every day. I didn’t realize how awkward and ecstatic a hug could feel after eight months with no touching.

159 days. He lasted 159 days with no tics. No uncontrollable movements. No disruptive noises.

Until the snowy day it started again. At first I was in denial when Brian pulled me into the hallway and franticly said, “That is a tic!” No. Surely it was just funny noises Tyler was making because he was frustrated. Then I opened the door to look at him with fresh eyes. He was so anxious that he was shaking. The tongued buzzing was coming with more fury than it had an hour before. The scratching at his legs was frenetic, and we couldn’t coax or medicate him down to a calm state. Within the span of an afternoon, our son was sucked back into the clutch of PANDAS. Desperate calls were made to Dr. Stanbro accompanied by video of our ticcing, anxious child.

“Well, we had a good run.” Dr. Stanbro’s words hit me in the gut when we saw him a couple days later, after the snow had thawed. The hopeful future I had played out in my mind—the one where Tyler simply got better and better every day followed by a future in which PANDAS was simply a faint memory—was shattered by the recollection of what I already knew about this disease. Exposure to germs, the trajectory of the disease, and the atypical severity of Tyler’s case dictated that there would be relapses. This was a relapse. 

But we weren’t back at square one. Square one was a reality in which there was no diagnosis, no sense of hope apart from a miracle from God. Definitely a setback, but we weren’t at square one. Medication changes, withdrawal from school, adjustment back into the routine of having an ill child, changes in plans and expectations for what life would look like over the coming months. But not square one. Thank Jesus, we never have to go back to square one. 

Last summer, when we asked Dr. Stanbro what we could realistically expect for Tyler, he told us that Tyler’s case was definitely among one of the worst cases of PANDAS he had observed. He encouraged us that the child with the worst case he had ever seen was both symptom free and medicine free within a year. At the time, the concept of “symptom free and medicine free” was a eutopic hope so opposite our present reality. We knew it would take a miracle to get there.

We aren’t there yet. Tyler has been on antibiotics for 13 months now, and I don’t know when (if ever, really) he will be able to live without them. But I would be a bold-faced liar if I said Jesus hasn’t performed a true miracle. This last week was proof of that. 

Allow me to paint a picture of a miracle. Watching Tyler sing the Lego Movie theme song into a microphone with his cousins at a family reunion. Flying down a zip line into his dad’s arms in a freezing lake in the mountains of New Mexico. Giggles with a friend while sitting on a hotel bed playing on the iPad and eating junk food. Rushing through dinner and asking if he could please leave the table to play ball outside with the other kids. 

This is more than a good run. This is healing. This is Jesus showing off. This is Tyler.

It’s interesting to see Tyler coming out from behind the veil of illness. He’s funny, witty, quirky, and amusingly odd. The genius he tries to hide pours out of his mouth in an overflow of words. A weird, punky kid with a peculiar sense of humor, keen logic, and unwavering moral compass. It’s nice to reacquaint myself with my son. He has grown into quite a young man while hidden away in illness. 

This is a good run. It’s an amazing run. Yes, apart from supernatural healing, PANDAS will likely flex its muscles again one day, sending us all back into weeks or months of recovery. But if it does, God will once again grace us with everything we need to make it through till the next good run. He’s God of the good runs and God of the bad ones. His provision shines as sustaining grace during suffering and the ecstasy of health and wholeness during ease. 

There’s no way to know how long it will last, but for now, I’m just going to relish this present moment. My smile will gleam when he giggles, not because I’m necessarily amused by whatever tickled him, but because I don’t take his giggles for granted any more. I’ll enjoy the embarrassing debates Tyler likes to engage strangers in, even though I would probably thwart that behavior in any of my other kids. I’ll hold my tongue when I’m woken in the middle of the night by a crowded bed because Tyler and Brian are watching silly YouTube videos. That’s a far cry from a wounded and terrified child who wouldn’t let you touch him. I’ll just scoot over and drift back to sleep with a silly grin on my face as I thank Jesus for healing my son.