Faithful Not Successful

That time we went to Lourdes and our son was healed

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.

8FE940CD-1849-4F30-B037-5543993E6A76 (1)

***

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
18342353_762907723871370_5670194309368384106_n

Airport selfie with Pod-parent Amy Cattapan. This ordinarily would have required 47 outtakes. He was smiling and looking at the camera in every one.

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.

IMG_0470.JPG

Sitting up straight, just like big brother

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.

1C1F3925-D267-4247-9236-C023FDF7D116

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:

45 Comments

  1. carol on June 5, 2017 at 9:53 am

    You made me bawl like a baby. Praise God and all the good He does for us. I prayed for Oscar every day you were in Lourdes and He has answered them. Love from Minnesota.



  2. Alicia @ Sweeping Up Joy on June 5, 2017 at 10:49 am

    Wow. Just wow. Thank you for peeling back layer after layer of blessings that this trip has been for your family. Peekaboo!!!



  3. Rebecca Ramsay on June 5, 2017 at 1:41 pm

    A-M-A-Z-I-N-G



  4. Sonja on June 5, 2017 at 7:06 pm

    May the Lord bless and keep you and yours.
    Ms Sonja. ❤️



  5. Tami Brett on June 5, 2017 at 7:08 pm

    Oh wow! I’m so very happy to hear this!! Great big momma hugs to you and Deo Gratias!!!!



  6. franciscanmom on June 6, 2017 at 3:58 am

    Here via Amy Cattapan. Your story gave me goosebumps. I’m so happy that God has given Oscar, and your family, this beautiful gift.



  7. Laura Mendola on June 6, 2017 at 5:34 am

    Love these testimonies of miraculous healing! To those who believe no explanation is needed. So happy for Oscar, you and your family. Thank you Father, Son and Holy Spirit!



  8. Amy Reitmeyer on June 6, 2017 at 6:53 am

    Goosebumps – so happy for you all…



  9. Catalina Brand on June 6, 2017 at 6:56 am

    I came to your blog because one of my Facebook friends liked this blog post that one of her friends shared in Facebook. My husband and I went on Pilgrimage with our parish in May and visited Lourdes a week or so after You were there. I have now read several of your previous posts as well because you have a beautiful way of expressing what an incredible experience it is to be in Lourdes. Thank you for posting! I will keep your beautiful baby boy and your family in my prayers.



  10. Kayla on June 6, 2017 at 12:34 pm

    Wow. Our priest shared the link to your post on his Facebook, and I am so thankful to have read it. Our three year old son has a very rare genetic syndrome which has resulted in significant developmental delays across the board. It has been a tough journey so far, but we find comfort when we remind ourselves of what you wrote about in the end–that the number one goal for our children is for them to return to our Father in Heaven and how if our son continues to have the cognitive issues he has, he will be incapable of sin. You said it all so perfectly. We will be praying for your precious boy and family!



  11. Christy on June 6, 2017 at 12:44 pm

    Thank you for reading! We will keep your son and your whole family in our prayers too.



  12. Christy on June 6, 2017 at 12:45 pm

    Thank you for stopping by and for the prayers. Lourdes is such an incredible gift to the world. I’m going to be unpacking this trip for the rest of my life!



  13. Tracy E. Cullom on June 7, 2017 at 11:05 am

    Thank you for sharing your story! Praise Jesus!



  14. Lisa Marie Arnold on June 7, 2017 at 3:50 pm

    Wow. What a blessing! My feelings are indescribable, As I am overcome with tears and palpable joy for you and your family . I can’t thank you enough for allowing me to join you during those special moments of the Pilgrimage . Many blessings today and always .

    Lisa



  15. Dolores on June 9, 2017 at 7:36 am

    OMG!! I can’t stop crying!! Thank you for sharing this BEAUTIFUL, MIRACULOUS, FAITH FILLED, BLESSED journey!! And for sharing Oscar with us! I will keep him in my prayers, for he IS a link to Our Lady of Lourdes. God bless you!!



  16. Anna Moore on June 15, 2017 at 4:33 am

    Wow! It is a miracle. All those changes … Must be breathtaking to witness. Peace to your family



  17. Bernadette Cenon Abaya on June 16, 2017 at 11:29 am

    Thank you for sharing! That’s the power of God through Our Lady of Lourdes. No words can explain what being there is like — you have to see it for yourself!



  18. Paula on June 16, 2017 at 11:40 am

    I am a 2017 malade from the purple team. Hearing this wonderful news about baby Oscar really lifts my spirit and brings me great joy.



  19. Deacon Jack Shea on June 16, 2017 at 12:31 pm

    I have been praying for Oscar and you since the Pilgrimage. This is wonderful news.



  20. Maryann on June 16, 2017 at 12:48 pm

    Thank you, thank you, thank you Christie for your beautiful words, the strength of your spirit – and for the love of Oscar your husband and your children. May encourage you to keep on writing down deep, gods gifts are there – people are hungry for his word. Your writing is a way to feed his sheep. Keep writing . Lots of love Maryann – another malade on the trip



  21. John J Schweska on June 16, 2017 at 2:45 pm

    How truly wonderful. So happy and United . Ave Maria! Jesus reigns!
    John Schweska. A knight



  22. Mary Rose Aquilina on June 17, 2017 at 6:57 am

    Thanks , thank you for writing such a beautiful letter. Am so happy for your family. God does wonderful things to people that believe in Him and have such fervent love in Him. Thanks Blessed Mother. Have mercy on us.
    I keep you in my prayers always. Love Mary Rose (malade, purple team).



  23. Christy on June 17, 2017 at 11:17 am

    Thank you, Mary Rose. I hope the pilgrimage has brought graces into your life as well. We pray for all the malades daily!



  24. Christy on June 17, 2017 at 11:17 am

    Thank you for your prayers, Deacon Jack!



  25. Christy on June 17, 2017 at 11:18 am

    Thank you, Paula. I hope you have also seen fruits from your pilgrimage. We pray for all the malades daily! The knights and dames were right — the pilgrims on that trip feel like family now.



  26. Christy on June 17, 2017 at 11:19 am

    Thank you, Maryann. We are keeping you in prayer, too! The trip was such an amazing experience I can’t help but write about it.



  27. Paula on June 18, 2017 at 12:04 am

    Mary Rose! I think about you frequently. I hope you and your daughter are well!



  28. Marge Carroll on June 19, 2017 at 10:08 am

    I believe in miracles!



  29. […] written by the mother of the malade that I cared for while in Lourdes. Please visit her blog here. You will not regret taking the time to hear her Lourdes […]



  30. Will Fleming on June 21, 2017 at 8:57 am

    Thank you for sharing this. Beyond beautiful.



  31. SheriLynne Hansen on June 21, 2017 at 10:05 am

    Praise the Lord God Almighty!



  32. Bob R. on June 21, 2017 at 2:12 pm

    Amazing! Thank you for sharing. The world needs to hear this!



  33. Abigail Ahrens on June 26, 2017 at 6:38 pm

    Christy-I can’t tell you how many times I’ve read and re-read this post. Every. Single. Time. I am brought to tears of joy for the greatness that our God has shown the world through your family. Through your willingness to be open and honest. Through your precious Oscar. Thank you for sharing your miracle with the rest of us. Praise be to God!



  34. Christy on June 26, 2017 at 6:56 pm

    Awwwww… you are so kind. I have to re-read it periodically to remind myself of the absurd generosity of this gift. The Holy Spirit was definitely doing a lot of the heavy lifting with this post. God is good, all the time, all the ever-loving time.

    Oscar saw another doctor today he hasn’t seen since “before.” She said immediately how different and alert he was, even though she met him ONCE and I brought him in today vomiting and feverish! It’s really too ridiculous NOT to believe.



  35. Amy Betters-Midtvedt on July 28, 2017 at 8:04 am

    My mom (Mary Betters) shared this and I am so touched by this story! She has shared with me about Oscar’s journey (I am the daughter with 5 kids, so our moms chat about us often i think.;-)) Thank you for sharing this…God is indeed good ALL THE TIME. And I love when He blatantly reminds us of that in a way we just cannot ignore.What an experience this is!! Amazing! I know you are coming to town, it would be lovely to meet. Either way I am going to go back and read more of your wonderful blog!



  36. Sarah on October 20, 2017 at 2:04 am

    This is such a beautiful and powerful testimony. <3 Thank you for sharing it. May I re-blog it?



  37. Christy on October 20, 2017 at 5:15 am

    Hi Sarah! Please feel free to use a short excerpt (100 words or less) with a link back to the original piece here at my blog. Thank you for reading!



  38. […] leave you with this link to a beautifully-written, moving story of what happened to a sick little boy after a trip to […]



  39. Sarah on October 21, 2017 at 5:24 am

    Thank you. 🙂



  40. SR on October 21, 2017 at 3:11 pm

    Who can say the “correct words” for this? Certainly not I! I will say, “Thank you so much for sharing this.” God and His love for each and every one of us must never be taken for granted.

    This is a story of hope, love and one of the greatest of His attributes. Mercy! May He continue to bless all of you with it. God Bless, SR



  41. myallaboutyou on January 28, 2018 at 10:41 am

    Reblogged this on All About You.



  42. Christy on January 29, 2018 at 2:17 pm

    Thanks for reading and sharing the story!



  43. myallaboutyou on January 29, 2018 at 2:20 pm

    No problem. I really enjoyed reading it. Miracles do happen. I am happy for you



  44. Matthew on January 7, 2020 at 4:59 am

    I was going to burst out crying whilst reading your post. Words cannot describe how happy I am for Oscar and your family. I noticed that some time has passed since you have published this… I hope that you’re all doing well.

    On a separate note, I thank you for sharing your faith. Whilst I was born Catholic, I lost my way over the years and I am trying to get back on track. Sometimes it so so difficult to believe in something we cannot see.



  45. Christy on January 22, 2020 at 3:01 pm

    Matthew, I’m sorry it’s taken me so long to reply to this! Thank you for reading and for sharing how the story moved you. Oscar is doing incredibly well these days — in fact, it’s probably time for an update post!

    I was also away from the church for many years. Our entire lives are just a pilgrimage to figure out how to get back to God’s arms. I will pray that you will find your way, and please reach out if you have any questions or just want to chat with someone who’s made that move to get “back on track.” Peace be with you.



Leave a Comment