This is part of a series about our 2017 pilgrimage to Lourdes with the Order of Malta American Association. You may want to start with the first post, or see all the posts about our family’s Lourdes pilgrimage(s) in reverse chronological order.
After the baths, during the rest of our week in Lourdes, our pod members commented on how alert Oscar seemed. He was, too! I chalked it up to having the undivided attention of seven (or 400!) adults — being the constant star of the show certainly would have been engaging. But also, I knew there was something mysterious in the air around us. The graces of that place are so thick you can almost cut them with a knife. He babbled, he smiled, he watched the world with curiosity and intentness.
The Saturday after we returned from Lourdes, Todd was driving our family home in the van. Oscar began to fuss, and I jumped back a row from my passenger seat to amuse him in the hopes of avoiding a full-scale meltdown (they tend to be contagious).
I talked and sang silly songs, and he began to cheer up, watching me soberly, but every time I stopped, he picked right up fussing where he had left off. Finally, I covered my face with my hands, then popped out and cried, “Peekaboo!”
You can tell I was out of ideas at this point, because peekaboo had never once worked in over a year of trying. Todd and I had tried it. Oscar’s siblings had all tried it. His many therapists had tried it, even using animatronic toys to spice things up. The best you could hope for was a moment’s eye contact and maybe a brief smile, but it was clear, every time, that he just didn’t get it. When he smiled, he was responding to your smile, not to the sense of anticipation or to the joke of the sudden reveal. Usually, he would only look once or twice, and then only if you were particularly enthusiastic in your delivery, before staring off somewhere else in his usual hazy daze.
This time, he looked at me from the corner of his eye and smiled when I uncovered my face. Grasping eagerly at straws, I tried it again, covering my own face, reappearing with a grossly exaggerated expression and abnormally loud “Peekaboo!” His smile grew wider, and he turned his head to face me. I doggedly repeated myself, and after a few more rounds, he was still watching, sucking hard on his pacifier. His grin split open and he rewarded me with a small giggle.
We had already shattered all previous peekaboo records, and I felt excitement rising in my chest. I didn’t stop to call anyone else’s attention to it because I didn’t want to break the spell. I leaned over, and this time I covered his face with my hands. When I moved them away with a “Boo!” he squealed with delight, spit out his pacifier, and laughed out loud.
The next time I covered his face, he raised his own hand and placed it on top of mine. When I moved, he moved, and when I booed, he chortled with glee.
We played peekaboo the rest of the way home, for five minutes straight. By the end, each time I covered his face, he reached up quickly to push my arm down himself, howling with laughter before I even rewarded him with the big monkey-faced payoff. “PEEKABOO!”
He totally got the joke. It is the first joke he has ever gotten.
For those of you who don’t know Oscar in person, you may not have a good idea of what brought us to Lourdes in the first place. On his five month birthday, he had a generalized, tonic-clonic seizure (the kind most people think of when they hear the word “seizure”). Over the next few days, he had several more, and he was diagnosed with epilepsy. Over the next few weeks, several medications failed to control his daily seizures, and he was diagnosed with refractory (“difficult to treat”) epilepsy. Several months later, he was diagnosed with developmental delays across the board, which ominously persisted even after his seizures were under control.
Before his pilgrimage, at almost eighteen months old, Oscar was functionally stalled at a developmental level between three and nine months. His doctors suspect an underlying genetic cause driving both the delays and the seizures, but his presentation doesn’t fit any known syndromes. We don’t have a diagnosis or explanation, just an ever-growing list of symptoms and things he can’t do.
Oscar has always been a social baby. He is calm and joyful, radiating an infectious, easygoing contentment. He is happiest around other people and engages easily with smiles and eye contact when face to face with someone.
But he also spent long periods of time withdrawn and unresponsive, exploring only what was directly in front of him or just staring with a vacant expression. At home, he was content to lie on his mat and look at the same toy for an hour or more. He tired easily and slumped when he sat. If he fussed or cried, it meant he was physically in need: hurt, hungry or tired, always that and only that. He was eerily quiet, babbling or cooing rarely, laughing even more rarely. His responses to any kind of input — visual, auditory, tactile — were slow and muddy; often he would stare at something a full 10 seconds before reaching out to touch it. He was battling not just the fogginess of his own abnormal brain circuitry, but also his highly sedating medications. He lived a lot in his own little world.
Here is a partial list of things Oscar can do since May 5, all of which he did not do before our trip:
- Respond to his own name
- Turn to look at someone speaking to him
- Make eye contact across a crowded room
- Engage in turn-taking babbling exchanges
- Look directly at a camera and smile attentively
- Sit up with a straight back indefinitely, without slumping or flopping over
- Push a button intentionally with one or two fingers, not a whole-hand slap
- Laugh at games in anticipation
- Imitate someone else’s gesture
- Army crawl
- Push up to hands and knees unassisted
- Hold two objects, one in each hand, at the same time
- Release an object intentionally
- Put one object inside another one
- Cry with frustration when he is bored or wants attention
Was he fully and miraculously healed? No… At least not yet. These differences are not the kinds of things that are readily apparent to anyone with only a passing acquaintance of Oscar. If you ran into us in the grocery store, you would still see that he is not typical for his age.
Within a week of returning home, however, we had appointments with his physical therapist, occupational therapist, speech therapist, and neurologist, in addition to lots of visits from close friends and family. In each case, they knew we had taken a trip and why we had gone, but I didn’t say anything about the remarkable changes I had noticed in Oscar. I didn’t need to. Every person who knows him well and has spent time with him this month has commented that he is markedly different.
At physical therapy, where he goes twice a week, his therapist’s first impression the day after we landed in Austin was this: “He’s very callllllm. His body is very organized.” She usually has to fight to maneuver him into his various positions, and he has a tendency to buck his torso around or throw his arms and legs out spastically. He did none of that. We chatted about the trip as she worked with him, but I could tell she was distracted by his changed demeanor.
By the end of the hour, she told me, “I’m a little freaked out.” Exact quote.
At occupational therapy two days later, Oscar was grabbing for small toy gears with precise one-handed grasp and aim, where previously he would have slapped at them with both hands until one fell off. He pushed a button to start his favorite toy over and over with his thumb or with two fingers. When offered a set of objects, he picked the blue one out to chew and explore, time and time again, even when the objects were presented in random order. These have been therapy goals for nine months, worked on during sessions and between sessions, with little or no progress.
At Mass that Sunday, playing with his favorite toy, he babbled and chatted so exuberantly that we had to take him out of the sanctuary. Never once in his life have we had to remove Oscar from Mass for acting like a normal toddler.
My favorite story of all, though, is what happened at our visit to the neurologist. He has seen the same neurologist since the night of his first seizure over a year ago. She sees him in her office every two months or so. She has covered every EEG hospital stay and reviewed countless hours of video footage. She knows Oscar far better than any other physician.
As soon as she walked into the room, she greeted me, then him. She commented on how alert he was, compared to his previously wandering gaze. Today he was fully engaged and watching her closely. I moved him up to the sit on the exam table, and she noted that he was sitting up unusually straight. (Another side effect of both his neurology and his medications is low muscle tone and low core strength.) I commented that he had been sitting up ramrod straight since our trip, not losing his balance or throwing his torso backward.
The doctor looked at him and smiled, saying “Oscar, you’re sitting up like such a big boy! Yay!” She clapped her hands in delight.
He looked her dead in the eye, smiled back, and moved his hands together three times.
She and I looked at each other in shock and I choked out, “He’s clapping.” She said, “I think he did. Yay!!” She leaned over him again and repeated her movement. He smiled back and did it again.
She looked at me. “Have you ever seen this before?”
“No, never in his life. He played peekaboo for the first time a few days ago too.”
“Yay!!” She repeated her encouragement a third time. And for the third time, he made perfect eye contact, smiled broadly, and brought his hands together several times. In the past, he has sometimes clasped his hands to his chest in excitement. This wasn’t the same gesture. His hands were cupped loosely and his wrists were floppy, so he did not manage to produce an actual clapping sound. But the arm movement was deliberate, quick, and controlled. His eyes were steadily glued to hers. He looked at her expectantly, as if to ask, “Are we going to do it again?”
She sent me an email from her personal account the next day. She thanked me for the bottle of Lourdes water I gave her. She also thanked me for sparking a lively dinner table discussion with her family about the miracle of Lourdes.
The number of things he accomplished in those thirty seconds, and in the game of peekaboo, is astonishing. Deep social engagement. Turn taking. Anticipation. Crisp, coordinated, fluid movements. (Encouraging a family to speak openly about the power of God!) This boy has been measured up, down, and sideways since last May, using both qualitative professional opinion and quantitative pediatric scales. He is moving past all previous accomplishments and predictions at a breakneck pace.
I have a skeptic’s heart, a cynic’s mind, and an agnostic’s liberal graduate education. So I know some of you are reading this and thinking, “He was probably on the verge of making all these developmental leaps before the trip. The timing is just coincidental. This is the kind of nonsense that makes it impossible to talk to religious people about anything important. They throw science out the window and twist the facts to fit their desperate need to believe in some bogeyman in the sky, because they can’t just deal with life.”
I see you those objections, and I raise you this solid truth: God loves you more than you can possibly imagine, even if you choose not to love him back. Nothing I can say here will convince anyone who is utterly determined to view our world as entirely mechanistic, reducible only to mathematical and rational principles (even acknowledging that those principles may never be fully discovered).
You say coincidence. I say providence. No, I will come right out and say it: miracle. No scientific principle, no medication regimen, no innumerable therapy appointments can explain what has happened with our son’s development this month.
We have five other children. I’ve watched intimately as five other babies made astonishing developmental leaps overnight, as babies do.
This. Is. Not. That.
I know this because I know babies in general and Oscar in particular. I know this because he has confounded every member of his medical team. But I also know what has gone on in my own heart and mind since Lourdes. I am relying on the evidence of my eyes and ears, and also on the evidence of my spirit. And a God who can take the miserable wreckage of my faith-in-name-only, my painful introversion and unwillingness to rock the boat or take risks, and turn this sad, tired, broken woman into someone who is writing swiftly and publicly, ready to shout from every rooftop “God has done great things for us”… A God who took twelve Apostles frightened for their lives and hiding in a locked room, filled them with the Spirit at Pentecost, and turned them loose to build the greatest faith the world has ever known…
That God? That God loves us beyond measure, and numbers the hairs on our heads, and whispers love and peace and healing into the smallest details of our lives, without fail and without ceasing.
That God healed our son.
Oscar doesn’t actually need to be healed. Our number one goal is to get our children to heaven, to return them to the Father who loaned them to us. Because of his cognitive development, Oscar is incapable of sin, and he may stay that way forever. As a baptized Christian in a perfect state of grace, he has a straight ticket to heaven. Todd and I have talked a lot about something Ryan, Oscar’s charioteer, said to us about healing. If Oscar is healed (i.e., made more “normal” like the rest of us), it is for our benefit and to increase the deposit of faith. But it’s not necessarily the surest path to heaven for Oscar himself.
So in a way, we have been given the most miraculous gift of all. Oscar is so clearly better and different than he was before the trip. Is he “normal”? No. He may still never be. But maybe God actually healed him just enough to be a witness to the power of faith and to maintain his pure, sweet soul. To continue serving as a living icon of holy brokenness, by being able to engage the world around him a little bit more than he used to, by playing the starring role in an amazing story that his mother steps out of her comfort zone to share, so that more and more people can fall in love with our beautiful Oscar… and with the God who saved him, even before he healed him.
Want more of the story? Read my other Lourdes 2017 posts here: