These are the reflections captured during our recent trip to Lourdes, France. Each journal entry has been kept “as is” (for now) so there are no edits or corrections. They are as true to my words and thoughts at the time as I can keep them. Please feel free to share with others. Although these entries are personal, they are not private. These words are not my own, and all praise is due to the Holy Spirit for inspiration and presence.
Sunday, April 26th
Anticipation
In the dark, in the still of that early morning your eyes looked up to me. Pleading, speaking. Through the blur of my tears my heart wrenched as the words whispered to you. “Go ahead little boy,” tears streaming down my face. “If you need to go, then go. It’s OK. Just make sure you say goodbye to Mom before you do.”
I count that as the most shameful moment of my life. When I gave up on you. When I failed you. When I listened to the world. The doctors. My fears. My doubts. When I turned from the hope in my heart. When I hated God.
It drives me everyday. With William, with Matthew and with Hope. And even with Gabriel, whom I also failed. It motivates me and propels me and inspires me. To squeeze as much meaning and love out of every day that I can. From the moment I wake up, grateful to have another chance with him. To every night as my eyelids slowly close and my thoughts begin to float from consciousness. That moment, in the cold and still dark hours of the hospital in Loma Linda’s PICU haunts me, so much that I could not bear to even admit it out loud until a few years later during therapy with Jen.
In the failure and falseness of my heart. Your mom stood steadfast, with love and tenderness but also with the slow simmering rage of determination. Of stubbornness. Of unrelenting faith. In you. In your healing. And in God.
She would stay at your bedside for hours. Everyday. And one evening the hospital chaplain came in to check on you. He held his Bible, and asked if we would like him to pray for you. I remember that your mom stood up, and held your hand as they both looked down at you in your crib. He looked at me, sulking and sullen in my hurt. “Would you like to join us in prayer?” he asked. “No” was my defiant reply, said loud enough to tell him, and your mom, and even God above that I wanted nothing to do with Him.
I walked quickly to our car parked outside. In that parking lot that seemed to stretch on forever in the desert heat. That green Montero Jennifer had. I sat in the drivers seat, bitter and disappointed and hurt in my self and my actions. Stinging with the anger that God had left us and allowed the horrible chain of circumstance and events to have happened.
After the four months at Pomona Valley’s NICU, we finally had you home. With such joy and relief our neverending nightmare had seemingly come to an end. Until it reared it’s head again with even harsher vengeance. I was driving with Brian to work at Loyola Marymount. It was the Wednesday before Christmas, which was to be on a Saturday that year. Bri was in town and would work out of an office at LMU, in my same building even, just across the hall. We were driving that cool, sunny morning and I was excited for our Christmas party the in office. Mom and Dad and Mik would be coming soon to spend the holidays with us in California. Our first Christmas with William.
“We’re with the ambulance”, he said. “We’re going to go with them to the hospital.” William had stopped breathing that morning, after frantic attempts to wake him during his feeding, after calling 911, after trying to perform CPR on her own limp son, Jennifer and her mom were going back to the hospital we thought we would never leave.
Hours later I would walk into that house, across the very floor that the police officers had revived William on, littered with medical packaging and remnants of the struggle to save his life.
And in that car, in the deafening silence and amidst my seething anger, and hurt I sat. And traversing the feelings in my heart that God had either left us in abandon or turned without regard, in the stifling, suffocating warmth of that afternoon my cellphone rang. The voice that replied when I answered was one that I had not heard since moving to California. And when he spoke, it was the second time in my life that God Himself reassured me beyond all doubt that he was not just there, but present. That despite my anger and doubt and tears, that through our cries both pouring out on the outside and swelled up within, He heard. He heard us. “Joe?”, Father Rich asked. “How are you.”
“We have a saying, ‘Our Lady calls whom she calls.'” Jeff Ludwig stood at our table and spoke to us. It was only a few months before when we went and met him for the first time at Mercy. Remember? “What in the world have we gotten ourselves into, William?” I asked you between meetings, as we met with group after group of doctors and nurses and then Order of Malta Knights. I took you that morning to our medical evaluation, not sure what to think but strangely grateful that we were at Mercy, comforting I suppose because it was a familiar place, where Daddy works when he works at Mercy. During our last meeting, I took your hand for a last prayer. And when the former hospitaler, I forget his name, prayed to God and mentioned you, mentioned your name and said “through [you], You show us Your face” it took all my strength to keep from sobbing right then and there. That’s why we walked so fast out of those offices. Do you remember? Back through the main lobby and down that hall to the parking garage, I expected to start bawling once we were in the privacy of our van. But I didn’t. I just looked at your calm face.
I don’t know what this journey will be like for us and William. I don’t know anything about pilgrimage. And I wish I could share in the emanating excitement I can feel as friends and family, and people from the Order of Malta look at us with joy and palpable enthusiasm. Exceedingly timely, I recently listened to Gavin de Becker talk on his audiobook “Protecting the Gift: Keeping Children and Teenagers Safe (and Parents Sane)” say “the world of… our children is not a flat world whose edges are within view, but a round one with horizons we cannot easily see beyond.” And I feel that if anything, His plan will be revealed half a world away in the mountains of that place in Lourdes. Our Lady calls whom she calls. Maybe that is what I have been feeling so gently these past few months. With great hope and anticipation and love and joy all of you have supported us to help make this passage happen. So this is part of my thanks. To take you with us through my words, the best way I can try and capture William’s words, and maybe try to echo His words during this trip. You are in our hearts and minds with every step we take. Now let my words be your eyes and ears as well.
Acts 4: 8-12, the first reading for today which I did not even look at until now:
Peter, filled with the Holy Spirit, said:
“Leaders of the people and elders:
If we are being examined today
about a good deed done to a cripple,
namely, by what means he was saved,
then all of you and all the people of Israel should know
that it was in the name of Jesus Christ the Nazorean
whom you crucified, whom God raised from the dead;
in his name this man stands before you healed.
He is the stone rejected by you, the builders,
which has become the cornerstone.
There is no salvation through anyone else,
nor is there any other name under heaven
given to the human race by which we are to be saved.”
Wednesday, April 29
Departure, of Love and Loss
The sounds and bustle of the terminal faded and his blue eyes shined clear. His face, calm but with both a seriousness and matter-of-fact expression put into words, out loud even, what I sometimes dare not even admit to myself in solitude. They still echo now. “I just hope that she dies before my usefulness to her expires.” His daughter, similar in age and size and function to William sat with him, sharing a quiet but suspicious awareness to what is going on all around.
We left Baltimore on Wednesday night, amidst what seemed like an entire airport taken over by the Order of Malta. In fact, they had taken over the entire E Concourse, spread across multiple gates with tables and team leaders representing each of the various colored teams to which we belonged. His daughter, along with he and his wife were also on our red team. The transition from the curb right from the time we pulled up to the International Terminal all the way through check-in, then security then waiting was seamless. There was an abundance of help and welcome, and we were inundated with travel packs, scarves, blankets and information about our departure and trip.
What I have never told you William, but what I fear and dread in my heart every day is the very real possibility that I will live to see you pass from this life. Even now, in the quiet of the moment and peace of the heart I barely write it. My heart hurts and tears. One day you will die, and we will have to say goodbye. It is the saddest thing to me working in the hospital, and one of the most intrinsically unnatural things that can happen in this life. In this world that God has created. That a parent should outlive their child. That I may outlive the greatest blessing and gift of my life.
When I look back, and I hope that when you remember also, that is the reason why we have tried to squeeze as much as we can from every moment we are lucky to share. It is why I dragged you on my chest all through sweltering New York as a baby, why we sat through parades at Disney World, it is for everytime with every strand of my muscle I lifted you high above the airplane seats to go see Mamom & GeeDee, or Mama and Papa from Baltimore to California. It is why we sit here now, in the lull of schedule in Lourdes. I know we’re busy. I know we take you all around and make you see everything and I hassle you with pictures. It is why I love having you with me while I train, or teach. It is why I miss you so much when I’m at work or you are at school. It is the knowing that every moment of your life is fleeting, that if I cannot hold on to it and keep it and put it in my heart it will be lost. And that one day, when you are gone I will miss you more than ever.
Our flight out of Baltimore was as smooth as it could have been. And I was impressed both with the airtight schedule as well as the admission that because they are a military order, everything has a protocol. Before we left we were well aware of the boarding and departure process, and before we landed we were well informed of what was going to happen when we landed. Where we were going to go, where we would stand and what we would do. I couldn’t help but feel that the past few months starting with Lent had helped prepare me spiritually for the strength I needed to take you to where the Holy Mother had called you. It reminds me of many years ago, Fr. Hartley encouraging me to pray the Hail Mary. And it all makes sense that I tried my best to pray the rosary every day this past Lenten season, at times so compelled that I pulled off my headphones during my morning runs and prayed in the dark silence amidst the sounds of my steps and breath. So it was a comforting routine, surprising as it sounds even to me as I write it, to start out our flight with the rosary. With thankful anticipation to savor every breath of your own with mine.
Thursday, April 30
A New Day
Our assigned family, a Knight of Malta with his wife and daughter volunteers were with us from the moment our van pulled up at the airport. Their humility, dedication and service comforted the stress of checking in and getting through security, and provided company during our wait to depart as well as on the plane. Even before we landed the Order relayed our arrival plans multiple times, so we knew exactly what to do. And familiar faces of our companion family were our beacon at the airport. They would be with us for the rest of that arrival day too. I don’t think I can express with words the grateful debt of my heart to this family. Paolo Cahlo wrote that “work is love made visible”, and I couldn’t articulate my admiration any better for their demonstration of the Lord’s patience and peace made real in our lives already.
After checking into our room, we convened with the group for our first event in Lourdes for Mass at the Rosary Basilica. It was the first time riding on the blue carts, and just as described and promised we put our faith in Our Lady’s arms and trusted to let go.
I was right behind you. I so desperately wanted to see your face, to see if I could share in your experience. Anxious with the staggering mass of Malta uniforms, capes and colors and immersed in excited greetings as we made our way into the church I could only follow as our companion family pulled and pushed and slowly coursed through the crowd. The mass was beautiful, and in hindsight I wish I would have captured more of it in pictures or even video like so many others did. Fighting through fatigue as I have come to do so much from working at night, I listened with half closing eyes and half enraptured heart. Do you remember that choir? It was amazingly beautiful. As they sang “The Cloud’s Veil” I managed with waking consciousness to hear the words. “Even through the rain hides the stars. Even through the mist swords the hills, Even when the dark cloud veil the sky, You are by my side. Even when the sun shall fall in sleep, Even when at dawn the sky shall weep, Even in the night when storms shall rise, You are by my side. You are by my side.” I can hear them even now William, as I write in the darkness. I didn’t realize she noticed when I turned and listened for you. You and mom sat in the front of our section and we were a few aisles back. I thought you coughed or gagged, so I turned to where you both were to listen more intently.
She would later say that it was an example of unconditional love. These were the words from a woman, a wife of a Knight of Malta, a mother of a first time pilgrimage volunteer and a daughter of God who sat by our side as soon as she met us. She carried William’s heavy case of milk as she searched for our bus from the airport. She offered a seat with her family during mass, and afterwards was so happy to describe the moment with us, explain who was who and at the first chance she got bought a candle for us to light for our intention. She took our pictures and with the excitement of both a mother and fellow passenger on this pilgrimage I cannot help but be reminded of the unwavering duty that we admire in both Holy Mary, and Saint Bernadette.
As we walked after dinner, I was struck by just how beautiful and serene the whole domaine was. The sky changed from clear blue to pink and orange and then a deepening sunset. And it occurred to me to thank you. You are the one that the Lord works through in our lives. You are the reason we are here. You have brought us here. Remember that orientation breakfast we attended back in Baltimore? The one your brother and sister and Mamom and GeeDee went with us to? Jeff said to our table, “Our Lady calls whom she calls.” And I believe in my heart that she had called us, that she calls you, William. Thank you dear boy. For all that I think we are showing you and bringing you to in this world, it is really you who are taking us with you. Thank you for showing us beauty in life, through love that most would or could not believe you possess. Thank you for bringing these wonderful servants of the Lord into our lives and to bringing us to this place. This place, Lourdes. It may be the one safe haven on Earth where children like you, with their special needs and different abilities are welcomed, praised, lauded and celebrated. I promised myself that even if I didn’t know what to expect, that if we were going to find God here that I would take you to find God here. And if God is love, then yes we have found Him. But it isn’t me who brought you, I realized. It is you that brought us.
Friday, May 1
Still Waters Run Deep
“Are you ready William?” I asked him. We stood there, at the edge of the bath and he in my arms. Like a baby, like I’ve held him so many times before as a baby. He looked both up and at me, eyes waiting and face calm. I stepped down into the ice cold water, towel still around my waist dripping with frigid water so cold that I might as well have been wearing a towel frozen stiff. The words of the attendants faded away so that all was left was the buffered echo in the tiled room. I squatted down and placed him, completely naked into the water. Face up, over his hair but not over his face. His serene expression stayed the same. He didn’t flinch or yelp or cry like I thought he would. He was so calm when I stood back up that I almost wanted to dip him down again, just to be sure he was immersed in the Holy water. “Mother Mary, pray for us” the sign urged. But he stayed still. He stayed relaxed. He was at peace.
It was hard when I started nursing school. Almost everything would make me think of you. Microorganisms, pathophysiology, psychosocial development. My first few times in the hospital for clinicals I nearly burst out in tears because even the little things reminded me of our experiences with you in the NICU, and later the PICU. The smell of the soap, the layout of the rooms, even the joy of parents taking their babies home that Mom and I never got to have with you. But there was one evening, I don’t remember why but I was in an empty room at San Antonio. I saw it tacked to the cork board and it caught my eye because it didn’t’ seem to belong. It was slightly tattered, but a white sheet that stood in contrast to the various colored, laminated signs and posts that clutter hospital walls and equipment.
“Prayer of St. Francis de Sales
Be at Peace. Do not look forward in fear to the changes of life; rather look to them with full hope as they arise. God, whose very own you are, will deliver you from out of them. He has kept you hitherto, and He will lead you safely through all things; and when you cannot stand it, God will bury you in his arms.
Do not fear what may come tomorrow; the same everlasting Father who cares for you today will take care of you then and everyday. He will either shield you from suffering, or will give you unfailing strength to bear it. Be at peace, and put aside all anxious thoughts and imagination.”
I thought of that night, and this prayer many times since then, sometimes sharing it with friends or patients who were dealing with their own children’s struggles or unbearable losses. But most of the time it has provided me with some solace, some comfort when as I often do, I felt I was or would not be strong enough for you. And always I had focused on the suffering, the great hope that our Lord would help me get through some struggle. It had never occurred to me until this moment that through you, again and as always He has worked his message in what most would consider an unable, or rather disabled vessel.
Friday morning we started bright and early with our trip to the baths at Lourdes. As the vision Mary had said to Bernadette we were going to bathe in the water that Mary had promised, and Bernadette discovered from the grotto. What started out as some muddy trickle of water has now become a fountain of tens of thousands of gallons of water every day. Pilgrims from around the world come to bathe and wash in this water, now channeled through manmade baths to accommodate all visitors and their various abilities and needs. Last year my parents visited and my mother had a profound and very physical experience in these baths. The morning was cold and rainy, and William hates both so I wasn’t sure how he would do. He wailed when I dipped him into the cold Atlantic water at Ocean City last year, and he flinches and arches and tremors when his showers are either too cold, too hot or even too strong.
The Order of Malta is extraordinarily organized, so we arrived in caravan and they took us right up to the front of the lines, in our case as close as we could possibly be to the door. Old, soothing gospel style of music played over the loudspeakers, which I found somewhat peculiar given the very international demographic of visitors there, before realizing it was one of our very own Federal Association Knights singing and playing his guitar for everyone there. It was amazingly beautiful and relaxing. When William and I went into the room, we sat for a while and I heard a man splash into the water before us. Not seeing, but hearing him exhale and breathe quickly before the sound repeated and an infant screamed. It is a cry I’m extremely familiar with, working in the NICU. When we give babies baths, especially for the first time even under radiant heat and with warm blankets, they are quick to let us and everyone else in the unit know just how they feel about it. It wasn’t pain, it wasn’t urgency, it was simply the cry expelling voice and life and expressing in sound so much more than I can describe in words.
When it was our turn, several of the attendants spoke in French and gestured to do this and that. Suddenly one of them simply asked “English?” and to my relief introduced himself as another Knight of Malta from our same Federal group, who remembered William. They had me undress William and they would watch him as I entered the water first. After facing the wall, he put a soaking wet and ice cold towel around my waist, cinching it so hard that I wasn’t sure if it would be able to even come off. He talked me through everything they were going to do. I would step down into the baths and when I was in the middle I would squat down. They would be holding both my arms from either side and they would dip me backwards and back up immediately. He led me through prayer and guided me through the intention in my head, which was only one. “William” I thought. I sat down into water MUCH colder than I anticipated and when they rocked me back I involuntarily took a huge inhale followed by exhale. I’m pretty sure I exclaimed “It’s really cold!” Without entertaining the moment, the Knight had me wash my face and give my thanks, and then get my little baby.
After lunch, that afternoon we were all subdued and relaxed but were treated to a brief history of Lourdes, St. Bernadette and the Order of Malta. We took team pictures and then headed inside another church in the domaine for mass and the Sacrament of the Anointing, where they blessed William’s head and my hands with oil. Following the mass we all received medals which we were told later are actual real medals, that if we were in the military would decorate our uniform. The Knight that told us was a former Marine, and was proud to share his reverence for how important both the moment, and the medal was.
That night we decided to walk off another excellent dinner and ended up again in the domaine. We came across some of our newfound friends who were heading to the nightly candlelight procession. And through the sunset and dusk, wearily walking amidst strangers of different languages and expressions, but all holding up candles and singing Ave Maria we processed into the night.
Saturday, May 2
Making Memories
It was a perfect night. The air, after a warm and muggy afternoon moved easily with a light breeze now. The sun that had beat down earlier had set into a deepening blue. The neon signs and fluorescent lights spilled out into the evening sky and the bustle of tourists, religious and locals filled the streets. I watched you. You and mom, move from store to store. Her attention vacillating between both souvenirs for your brother and sister, and your own face. You’ve grown so much now, I watch you even now as I write and marvel at how long you’ve become. How big your face is now! But in that night you are still small, lifting your head and watching all around you then resting it and hunching down like you like to do for some reason. And it occurred to me. I don’t know why it had never come to the surface of my consciousness before, but now that it does it sparks and catches fire. This right here. This is the thing I absolutely love about this trip, about spending time with you. With you and Mom and Matthew and Hope. Making memories. I love it. It binds it all together. This life. Our life. I love making new memories with you and Mom like this. I can feel it searing into the sights and sounds and feelings I will never forget. And I love it.
We started our Saturday morning with already one of our favorite rituals. Breakfast of croissants and cheese and ham and anything else the Panorama Hotel provides. I discovered the coffee machine that also makes hot cocoa, which I loved. Deacon Jeff and John and Marty joined us, and Jen discovered the hazelnut spread that led us down a fond discussion of Nutella. We were to have mass down at the Grotto, and soon enough we joined our caravan of blue carts but this time William stayed in his wheelchair. Just as in the military, many people joked, there was a whole lot of rushing to do more waiting. As we walked, the previously forecasted and expected day of rain gave way to a crisp and mildly windy morning. Warm in the sun but cool in the shade. As we waited for our turn I couldn’t help but marvel at the number of visitors the domaine had, and once again just how expansive the Order of Malta is with it’s representatives and orders from all over the world. Some of the Knights around me mentioned that the mass before us, that we were watching while waiting for our own was the Maltese detachment. From Malta itself. And I thought how proud they must be that the order named for their home has now spread itself across the globe.
At mass they parked William right up front, next to a man and daughter from the American Association. “She’ll do a lot of hollering”, he said as we introduced ourselves. I watched them, this man who seemed probably close to my age, bald with stylish clothes. And his daughter, bigger and probably older than William, with long curly hair. As mass began she stretched and leaned toward him, and he held her to calm her and pressed his head against hers. The moment brought me to tears and I was thankful I had my sunglasses on. In the presence of cardinals, bishops, priests, the statue of Holy Mary and the cross of Jesus himself I saw reflected in these two what others see in us, what I have felt and cherish and what drives not only this pilgrimage but so much of my life. The love of a parent for his child. This love, captured so eloquently in the fleeting moments in the sight of God. This is what it is all about.
As we walked back to the hotel for lunch I was amused and amazed at the literal sea of Order of Malta garb, uniforms and capes and clothes and robes. A sea of black, peppered with white and red. After another amazing lunch, Dale and Alex accompanied us on a walk to find the local convent that sells handmade rosaries from berries called Job’s Tears. On the way we stopped by some of the Order of Malta Association tables selling their own branded goods. Everything from jackets to umbrellas to lace to teddy bears were available, branded with this eight pointed cross that we have come to admire and love. The walk was engaging, pushing William up the ebbs and tides of this old town and our company now had become family. Though we had only known them for such a short time, these two women one young, on her own first visit to Lourdes and one further in life, with several years of pilgrimage, we now trusted with our son. After lots of shopping and walking and talking and eating, we departed to reconvene for the afternoon Eucharistic procession.
We were the only Red Team, and as we sat amidst hundreds of blue cards in front of the Rosary Basilica for adoration I watched you sleep. Deep sleep, that your mom and I are always tickled by, when we lift your arms and see how easily and limply drop when you are that out. The afternoon had become warmer even with the overcast and gradually muggier air. The crowds had gathered behind our group, up and across the bridge that overlooks the courtyard below. Around you, cardinals and bishops and priests and Knights and Dames of Malta with their robes and garb kneeled in adoration. The Dames in front of us from Hungary bowed their heads and knelt on the stone ground every time the Body of Christ passed close by. It was a reminder that we were, and live our lives in the living presence of Jesus Christ.
“Do you want to join us, John?”, Mom asked. The dinner had left us sluggish and full and happy, but it was great sharing a meal again with those we had spent the day with. He smiled, and said “Sure”, and we started our walk into the fading light. There were memories to be made.
Sunday, May 3
Connection
Usually when William’s legs tremor we try and hold them, to calm them and calm him. He isn’t in pain, he isn’t having spasms and he isn’t seizing. Because of his neurological symptoms, his brain doesn’t always recognize those little movements that we all have, and so his muscles fire over and over waiting for a signal to either stop, or contract. Most of the time when it happens family and friends look over at us, or ask us for help or what to do. A lot of them time when it happens around strangers, even (and especially even) in church people just stare. So it has become a source of self-consciousness at least in a small way for me, so that when it happens I calm his movements as much for him as it is for me. To avoid the stares, to avoid the awkward discomfort.
As he started walking towards us, I wasn’t sure what he was doing. Jen’s scarf had started to fall at the front of our cart and maybe the red and white had caught his eye as it neared the wheel and sandy gravel below. William’s legs had started shaking again, this time because he was stretching and extending his legs, and as he’s grown has also gotten stronger so bending his knees and breaking his extension is sometimes hard depending on our positions. But even as he continued his prayers, leading our group out loud in the Stations of the Cross, Fr. Drummond leaned over and without hesitation laid his hands on William’s feet until his legs relaxed. My vision blurred and secretly I was relieved that I had decided to wear my sunglasses, as my eyes welled up in tears.
Do you remember that huge church William? The one underground, where Mr. Scott and Dr. Alan took us to? I’m not sure if you do, since you were so deeply asleep. And I’m not sure if you remember but you peed all over Mom’s skirt. Now I’ve always said I’m not the most devout Catholic, and I certainly didn’t pay that much attention to the details or rituals of our faith when I was in school. I’m not sure if anyone else at Loyola did either, but it seems like a lot of the people here, Order of Malta and malades and companions alike sure do know a lot about what bishops are from where, and which cardinals are whom. All I really knew was there were a lot of tall hats. Apparently for many of them, they had only seen so many cardinals, bishops and the rest of the rank and file in Rome, at the Vatican before then. The International Mass had tens of thousands of people, had portions spoken in multiple languages including Latin. And don’t ask me about that. Three plus years of Latin and I still can’t make out the years in dates when written out in Roman numerals.
But what I do remember is how well our Knights took such good care of you. How they made sure we knew where they were going to be, how our Dames checked on us constantly to see how you were and offer us water, and how everyone descended upon us right at the end of the mass so that we would not be lost in the scuffle of visitors and tourists all trying to leave at once. They did the same after lunch and even into the evening where we once again joined the Candlelit Procession, this time with our Association.
Through the day it progressed to a steady drizzle, so much so that by evening everyone was pushing and pulling carts, walking alongside or riding and trying to balance holding both umbrellas and candles. The now familiar black accented with white and red was not blanketed with a sea of black and white and red umbrellas. The night sky was illuminated around us by the flames of love and friendship, led by an illuminated and immaculate statue of Mary, flanked by flags and emblems of peoples from around the world.
But only a few hours earlier we had been outside under overcast skies, walking or riding the Stations of the Cross with the flowing Gob River serving as it’s backdrop. For some reason, I felt that this may have been the first time ever that I had prayed these Stations. As I said before, I’m not the most devout of Catholics.
Reflecting back, framed within breathtakingly huge underground mass, between starlit but glistening candle light procession and seated intimately with brothers and sisters, we found a deeper and more permanent connection. Whether it was the connection of our team leader Paul checking on us constantly, whether it was our Dames pushing my wife and son in the soaked cart, whether it was simply Scott looking back to check on how we were doing or Mary introducing herself to us first thing in the morning at breakfast. Whether it was Fr. Drummond coming over with the gentle love of trust, or the Holy Spirit with the gentle peace of heart. We had found connection.
Monday, May 4
Sing for the Moment
The memory, unfolding live was perfect. The last rays of the setting sun shot across the translucent roof. A warm breeze had replaced the still hot air. The sounds of song and laughter filled the air. Images of parents, companions, Knights and Dames and volunteers laughing and smiling and clapping slowed to a stop. The sounds dimmed and time stood still. And I couldn’t tell if this moment had reduced to a single frame now, in this instant or if somehow I was visiting from our future, one of the most vivid memories of my life. Somewhere and sometime, years maybe decades from now I will come back to this place, tucked away and guarded safe in my memory. I will visit you then, when it is the only place I can see you and your mom like this. You in her arms, her head against yours. Laughing and clapping and singing in the French countryside. It was, is and will always be a perfect moment in our lives.
“That’s why we seize the moment, try to freeze it and own it, squeeze it and hold it ‘cause we consider these minutes golden. And maybe they’ll admit it when we’re gone. Just let our spirits live on, through our lyrics that you hear in our songs.” – Eminem
It is with both treasured passion and horrifying realization that here, in this time and in this place with William and Jennifer that these may very well be the best moments of our lives together. What this pilgrimage has afforded us is not only the time and space to dedicate and be with William, but to make the time and space in our hearts that I so often feel guilty about denying him in our daily routine. I love and adore the opportunity created by the Order of Malta for making this opportunity happen, and I am in love with the Holy Spirit and the Mother Mary for making a precious place in our hearts for this miracle to occur. I came here with an open heart and did not know what to expect, and now am profoundly grateful for prayers answered that I was too distracted to hear my own heart asking.
It was a perfect day, from the very beginning. We decided to walk to the upper town to the Chatau where our group would visit, the place where Bernadette grew up with her parents and siblings. The poor and humble beginnings not so different from how I imagine Jesus’ own holy manger. While the walk was uphill, it was steady and we were brought company by Candyce and several other malades, companions, and Order of Malta. The air was cool and crisp, the sun was bright and the skies were clear. The streets spoke with a renewed vigor of Monday morning. I pushed William as Jennifer and everyone chatted, about their experiences, about our plans, about things to buy. Before we knew it we were at our destination, even before those that had boarded and ridden the buses. Jen stopped by a shopkeeper who made rosaries and other religious articles, and was happy to support someone that both creates and is able to sell her handmade goods. We then had mass at the church where Bernadette herself was baptized, and after a beautiful mass we were able to see the very fountain that her baptism occurred in. It was strange to think that this miraculous event that happened to this little girl transpired in this very town we just walked and have been staying in. And that her church still stood, baptismal fountain and all.
The walk down was brisk, and we were delighted to sample the artisanal chocolate offered just a few stores down, see more of what the town has to offer and even see a Filipino food stand. After another delicious lunch we headed out to our countryside tour. We saw an amazing bridge that Napoleon had had built, watched mountain climbers scale what seemed to be impossible rock face, and saw beautiful waterfalls cutting through the pristine mountain forests. Our main stay was in Luz Saint Sauvier, where we sampled more gelato, local baked goods and looked for souvenirs for the kids. It was at the chapel there, another Malta church that we also met and talked with another malade and his parents. And even as a NICU nurse I was both amazed by how alert and how animated he was despite the conditions that his father described.
It made me think of our own times when William was much smaller, when we were still in his own NICU. Then, like now on this trip I often feel that our own situations and experiences are the hardest, the most crucial. And when I meet other families, parents or individuals who demonstrate a joy and gracious thankfulness despite circumstances that rival or even eclipse our own I am humbled to be in the presence of God’s children. His true children, who have faith and believe and are filled with the happiness that I find myself jealous of. As we walked back to our bus to continue our trip I was silent, smiling but silent at all that the Lord has revealed in my own heart. This, while dropped in one of the most picturesque towns, surrounded by untouched fields and hills and mountains under a Sound of Music sky. All here, on this pilgrimage. Earlier in the day one of the Dames of Malta, talked about here experiences just the year before with a father who had been changed during his time. He told her, “I thought I was here for [my daughter], but I’m really here for me.” Why am I still resistant then to accepting His love?
Our final destination, our countryside dinner and talent show was filled with reunited company and blossoming friendship. The food was delicious and the talent show coordinator, a Knight and amazing singer that had moved my soul in front of the baths, provided laughter and song after our meals had concluded. Act after act, as I held William and watched my wife I fell in love with all of this. It was, is still and will always be in my heart of hearts, a perfect example of His amazing, penetrating love.
Tuesday, May 5
The Angel Gabriel
Your brother came to visit today. I was wondering, no I was hoping that he would. I didn’t know when and I didn’t know how but he came. I count your brother’s passing as the greatest failing of my life as a father. Since then, being your dad has become the most important thing to me and I’m humbled to think that if I have succeeded in anything that being there for you and Matthew and Hope has been one of my greatest accomplishments. I am more proud of you than I can ever express. With every moment I hold you, with every smell of your head and every grasp of your hand I am filled with both joy for the present and sadness from the past. Because every time I kiss your face or watch you sleep in my arms I miss what could have and what would have been with Gabriel too.
Last night after I journaled and after I gave you a bath, after I changed and watched you and Mom lay down I went to pray at the Grotto. It was late, but I felt I was called to spend time with her. I thought of him then too. But the memory, the fleeting emotion was brief. What I did experience were flashbacks of your… or rather of our life. The late nights at your bedside at the hospital when you were an infant, watching your grandparents see you for the first time draped in IV lines and leads, unable to touch or hold you. I thought of our late nights at our first house in Claremont, dancing with you in the middle of the night because you weren’t able to calm your own self down unless we did so. In pain, I remembered kissing your face goodbye at the airport when Mom took you to stay with Mama and Papa, when for the first time I wasn’t sure when I was going to see you again. I thought about our sweat drenched walks around Manhattan, you on my chest as I asked graffiti writers to make a hat for you. I thought most of all about our times as father and son, just the two of us after you finally came home from the PICU, walking around our neighborhood as some of the best days of my life. And after my prayers with Mother Mary, after my intentions by candlelight and after my exit out of the domaine up the steep path behind the baths I saw it. I passed that upper basilica and I saw it. The Chapel of St. Gabriel. And I thought of him again. But he wasn’t here yet.
Today we had our final mass. William was completely knocked out this morning, so much so that even with our getting ready, the commotion of the room and us changing, then dressing, then moving him to his wheelchair he stayed completely asleep. Martie and Harry were with us again, this time with their son Brian. Dale was also with us too and I was happy to spend our last day with some of the Order that had become particularly close with us. We had mass at the Rosary Basilica, which had become my favorite because of it’s beauty but also because it was where we had our first mass. The thought of that alone as mass began almost made me cry, as I have come to so easily feel over the last week. Afterwards, as we braved the wind and rain we were honored to receive a blessing for William as well as ourselves as parents in front of the heightening Gob River. We took turns holding them umbrella over William, and finally made our way back to the hotel for lunch, then time on our own.
The afternoon was great, as we took our time and paced ourselves thinking of souvenirs for our friends and family, and momentos to help in some small way to extend this feeling of connectedness even when we are long gone, when the sounds of the town and the smiles and the laughter and the hugs had faded. We explored up again close to the Cachot, and I thoroughly enjoyed a sandwich from what Jen would later describe as “basically a Subway”. We purchased more rosaries from the strict Spanish speaking nun at the convent. We searched for those bracelets that Mom had been looking for. I returned for more looks of those St. Michael statues that were way out of our price range. And then we came to the Panorama for the Red Team meeting.
As he spoke, his words and tears wrinkled his face and cracked his voice. He sat across from me, holding his wife’s hand as he wept. This gentle man, this former Marine revealed to us all how they had lost their grandson only a few months before. This boy, whose hearts wrenched for and whose presence and memory stays with them still, now came upon us. And then, so did your brother’s. They told us how they longed for the day they would be with him again in Heaven, and I was blessed with the image of your own brother, our son and our Gabriel waiting with him. Waiting for us all with joy on their faces. The tears poured down my face and I was overcome both with relief and comfort and heartbreaking emptiness for them. It reflected how I believe Mamom and GeeDee felt when they came here last year, overcome with emotion as they saw other special children and their parents, just as these two had witness here with us, and everyone else. And I held you again, holding your body and kissing your head. Thankful and grateful for this message from above, relishing this intersection of memory from our past, the gravity and connection of the present, and promise of tomorrow’s future.
What I suspected Paul and Marla wanted to have in their meeting I think was immediately so much more. Despite the public atmosphere and the sounds of conversation from the next room, I looked from face to face and praised God for how much everyone had come into our lives and impacted them uniquely. I looked at Ted and Ronnie, moved by the humility and overwhelming devotion to us as their companions from moment we stepped out of our van at the airport, to our first trip to the domaine and to every day afterward. I laughed when John spoke, and cherished the walks and shopping expeditions we had after some of our dinners. I looked to Paul and Marla, and remembered words that one of my teachers had said to me, that “every group takes on the personality of its leader” and identified immediately how gentle and caring and attentive we were all to each other, in reflection of their care. I felt the same overwhelming emotion that Catherine’s mom shared as she talked about watching William and I at the dinner last night, and I was reminded of just how impressed I was with that whole family for maintaining such a positive and gentle demeanor despite the cards life had dealt them. I loved hearing how close Mary had become with us, and I felt both gratitude and awe and loss when the memory of soldiers who never made it back home from overseas was brought to our presence. I thought of Alex and Brian behind me. I cried when Jen shared our profound gratefulness. I looked at Michael, so handsome and grown up with his parents and could not imagine being as strong as they are. But when Frank and Elaine spoke, it was more than their words that my heart heard. It was the warmth of love, the sounds of affection and the light of our little boys waiting for us with their Mother Mary.
I miss you. I’m so sorry I never had the chance to know you. But in the little time we had, as I held your small and then lifeless body in my arms I still cried as a father for his son. It was a terrible time with your Mom and me. But I know that you know. And it is why I feel and believe and know that you, and the light of your soul is real. It is why I am reassured that you watch over your older brother, and why I am thankful you do the same for your younger siblings. It is why I believe it when I see or hear or feel children in the NICU’s that I work in. It is why I am comforted at the idea that we have a little baby boy, a guardian angel with us through our days. Thank you for coming. Thank you for coming here, to this place. I miss you Gabriel. Thank you for visiting me. And thank Tyler too.
Thursday, May 07
Swing Low, Sweet Chariot
Dear Clare,
By now you’ve probably made it home. I hope everything went as smoothly as it could have. We saw your chair on the gangway when we exited the plane. They brought it over to us actually thinking that it was William’s. Jen and Scott panicked immediately, realizing not only that you were apart from your chair but you were thousands of miles apart.
The excitement and the energy has died down now, and I’m left only with the memories that we all made together during this past week. I dreaded this, the lull and low after such an amazing and beautiful week. But you were one of the first we saw, and now after the goodbyes have faded you are the last one left on my mind. No matter how many times we had to take William to the hospital throughout his life, it was terrible every time. Heart wrenching. Not only because of the concern and worry as any parent would have, but for the fear that once again the safety and stability of whatever had become normal was again threatened. The realization of just how fragile your life is, or William’s is absolutely terrifying. And every time, no matter where or when or how, with each hospital we entered and every doctor we met or nurse that worked with us, we brought back the emotions and pain of thousands of hours with us.
We prayed for you. At the last team meeting in the tangerine room. We all missed you. Your absence filled the room and rippled into dinner that night. You are the closest friend that William has ever had that was so close to his own conditions. He has gone to school with lots of other kids like you guys, all with special needs. Some with g-tubes, some with cerebral palsy, most with g-tubes or walkers or glasses. But in size, and even age and especially in your tone and temperament you reminded us more of William than anyone else. And I suppose that by association, your parents are a lot like we are too. But maybe in an opposite way. Your dad and William’s mom are alike in some ways. Constantly happy and upbeat. Social and friendly. But behind the smile and the bright eyes there is a trace of weariness, of fatigue. And maybe a little sadness. Your mom and I are alike too. Calming and nurturing, not quite as extroverted as our spouses.
I’m sorry I never really know what to say. Of all the people in the world, of all the dads of kids with special needs I could never quite express the language that my heart wanted to speak. So I just looked at your face and smiled, and sometimes touched you or hugged you. We never said a word, but sitting next to you and your mom on that night at the campground, listening to John sing and feeling the warmth and bonding around us, it was nice just being close to you.
You didn’t miss too much on Wednesday morning. Most of it was just packing and getting ready. Scott and William’s mom packed a whole bag of croissants for us, and we had planned to walk out to the domaine one last time, but by the time we made it outside it was time to board the wheelchair bus. We missed you then too. We had our first ride from the airport to Lourdes on a bus like that, together. And I can still seeing your dad sitting on the floor in front of you coming back to the hotels that night after the talent show.
Very much unlike your dad, I am quiet and not very quick to make friends. So it amazed me as we entered our final descent into Baltimore just how much my heart had been changed, softened by the tenderness of our Holy Mother, and overcome by the mercy of God the Father. I sat upright, as William had only finally begun to sleep, after more than seven hours of airtime. I looked back and caught the faces of those that we had come to know, and become close with and love and call family in such a short time. And I thought that only by the Grace of God would a person like me, who only last week felt like a stranger, who normally seeks solace in being alone now was dreading the coming moment when we would not see everyone every day. Even in the faces whose names I did not know, there was a great comfort in this newfound community, a great joy in this shared experience that so few back home would know of, much less understand. It was and still is a great privilege to have gotten to see, and spend time with Ben and Michael and Catherine and you. And all the other malades and companions. Every day. I suppose the only solace I have now, is a strange feeling of comfort that we are united by the Holy Spirit in our journey, and that our journey does not end here.
I woke up early this morning, long before I had set my alarm. William was awake too. The night was still dark and our house was quiet. Even outside. As I started my run in the darkness I began saying the Rosary, as I had many times before and now as a source of comfort and memory from our pilgrimage. I even said the extra decade for our Holy Mary. And as I did, I was flooded with images of you and so many others from our trip. When it was done, my feet still kept pace and my lungs still ached, stretched with the cool air that I had not flooded my body with since before departing. And I felt an openness, a familiarity that I had not felt in a long time. One that I missed, one that I had once before. One that I longed for again.
I’m sorry it’s been so long since I’ve talked to You. I don’t know why. I wanted to. Maybe it was from all the commotion that has distracted my heart. Maybe it was the pain and anguish we went through. Maybe it was the fact that it was easy to be distracted by the little things, the excuses we made of time and kids and jobs and everything else. Maybe it was my ever faltering faith, despite what seems like constant and obvious messages that You are always here. I promise to use this experience to always bring forth your greater glory. With every breath of my voice, every word that I write. And like a burning idea the lyrics of a tune that had been growing in my mind since being planted that night in the French countryside now emerged at the front of my consciousness. In the way You have spoken to me so many times before, my mind and heart were filled with song.
“There was a band of angels, coming after me. Coming for to carry me home. Swing low, sweet chariot. Coming for to carry me home. Swing low, sweet chariot. Coming for to carry me home.”
The Marana Family 