We are Pilgrims on a Journey

Ben and I leave for our pilgrimage very soon. We are packed and ready, but I'll be leaving with some unsettled medical business hanging over me. My neurologist squeezed me in this week and has ordered many tests to address my rather sudden decline in balance and muscle strength. In six months I've developed tight heel cords and hip girdle weakness contributing to my difficulty with walking and inclines. At my last visit I could stand up from a low step stool with some difficulty a few times. This time I could not stand even once. I also have sensory deficiencies, a tremor, muscle cramps and spasms, and most annoyingly, intermittent visual disturbance/blurriness. No wonder I feel old.

I got the blood work done, but still need imaging, skin biopsies, and an EMG (yuck). I've also been ordered to do physical therapy (something I was supposed to start already, but haven't made time for, yes, I know!), so to the locals, I'm looking for recommendations, the closer to home, the better. I was given exercises for the trip to do in the meantime.

So, it looks like we are all set for a three week European tour, right? In some ways this feels like bad timing, really I think it is perfect timing. I've been hopeful that my weakness was temporary or fixable, deeply I'm pretty sure it's not. If my gut is right, now is the time to do big things.

I was talking with a group of women in my prayer group about praying boldly. I shared that when Ben had his first cardiac arrest fifteen years ago, I had no problem praying boldly, actually demanding that God return him to me, no matter the cost. It was out of character for my praying M.O. yet it's just how I reacted. My prayer was answered and I've felt God's help through it all. I'm finding it harder to pray that way for myself. Irrational thoughts like, maybe we're only allowed one big miracle per lifetime, and I'd have to trade in the first one, or maybe this is all in my head and I'm just super lazy, or maybe I'm struggling physically as part of the necessary path for walking alongside Ben. My experiences have certainly helped me have empathy and understanding for his frustrations. And as always, I feel others need things more than I need to be stronger. A wise friend interjected these thoughts would indicate we have a very small god, not the God who Is.

Though I'd prefer to have all this taken from us miraculously, I'm also appreciative of the lessons and oddly can sense great value in hard things. I'm looking forward to having quiet time to mull these thoughts on the pilgrimage. Perhaps this will make more sense to me later, or I'll find the courage to boldly ask for what I want when the right time comes.

Jason presented Ben and I with a send off gift. He so thoughtfully acquired camino scallop shells for our journey. True pilgrims on the Way of St James are identified as they have been for over 2000 years by the scallop shells tied to their packs. The shell is also used as sign markers to point the way. There are many roads that lead to the Compostela de Santiago, like the ridges on the shell. At first I hesitated to tie my shell to my backpack, feeling we hadn't earned the badge since we aren't walking the Camino in the traditional sense. But as many faithful enthusiasts attest, the Camino begins at your own front door. Though we won't be meeting the 100 km requirement, we will be pilgrims on a journey seeking God's voice in our hearts. That counts for something. Buen Camino. 

Padre Pio, Man of Sorrows, Pray for Us

On this day sixteen years ago, twelve days after the planes flew into the World Trade Towers, I found out I was expecting our first baby. I recall the extremes of emotion from excitement, wonderment, surprise (my doctor had told me I would have difficulty becoming pregnant), trepidation, and concern. I'd just started a new job as a Catholic school teacher, my husband was doing temp work while looking for employment, we had zero savings after buying our first home, and our country seemed hungry for war.

My parents were in town for a work trip and we had plans to meet them at their hotel downtown that Sunday morning. We intended to keep our news to ourselves for awhile, but my face gave me away. Dad kept asking what was going on and Mom got teary. After an approving glance from Jason I asked how they'd feel about becoming grandparents in the spring. Dad slapped his knees with joy. Mom cried. We went to Mass at the Old Cathedral and walked about the Arch grounds as the news settled and a peace came into my heart.

On this day four years ago, I was folding laundry in my living room half watching mindless mid-morning news shows when our DVR auto switched the channel to EWTN. I let it be. It began recording (on its own) a biography about Saint Padre Pio, whose feast day it was. I'd not heard of this saint before, and he's pretty far out, stigmata, bilocation, levitation, and physically battling the devil at night. He was also big on redemptive suffering, the idea that our trials on earth are never without benefit either for our own souls, or for those of others.

At the time, the prayer most on my heart was for my friend's son, Jack. Jack was a fourteen year old who'd been battling muscle disease his whole life now succumbing to heart failure. It was an impossibly painful and helpless time. I decided to ask for the intercession of Padre Pio on Jack's behalf. Jack had never been able to communicate other than with his eyes or the squeeze of a hand. He knew all about redemptive suffering. Four months later, despite our hopes for a miracle, Jack passed away. I flew to Phoenix for the funeral and was taken aback by the officiant. He was a Franciscan friar (Padre Pio's given name was Francisco, and he began his priesthood as a Franciscan) and looked just like him. The resemblance was comforting. Father de Blas passed away about a year later.

Padre Pio

Fr Alonso de Blas

I began reading all I could about this Padre Pio character, that I had felt had a hand in Jack's transition into heaven. He was beatified on May 2, 1999. Ben was born exactly three years later. He was canonized June 16, 2002, three days before we brought an extremely sick newborn Ben home from the hospital. Like Ben, he was very sick as a child and suffered much, especially with his lungs. He had to be home schooled due to his health. He was born in a small Italian town, Pietrelcina. He built a hospital in San Giovanni Rotondo just north of his home town called, "Home for Relief of the Suffering".

Pio is the patron saint of adolescents and I believe he picked young Ben out to watch over, to be one of his spiritual children. When Ben was 13 years old, he developed a cholesteatoma, a benign tumor, in his right ear. It is benign, in that it is not cancerous, but devastating in that it erodes the tissue it touches. He had it removed that December, but it had destroyed the hearing in that ear so a prosthetic inner ear was built for him. It is unusual for the cholestatoma to reoccur, but in Ben it did. So it was again removed eight months later, along with the prosthetic. When the cholestatoma returned for the third time it was with the frightening news that the tumor had gone outside the mastoid space of the ear and was likely entering the brain. The surgeon set the date for the third removal of cholesteatoma, September 23, 2015. When we realized the surgery happened to be set on the feast day of Padre Pio we decided to pray a novena leading up to the date asking for Pio's intercession to protect Ben's brain.


On this day two years ago, Ben's surgery went beautifully. His surgeon was amazed that though there was definitely evidence of further erosion from the tumor, he could find no tumor and that he had to shore up the lining between the mastoid space and the brain, but that his brain was unharmed. The CT images had indicated otherwise. Perhaps not surprisingly, Ben chose Padre Pio as his confirmation saint the following May.

The day after the surgery my husband went on a retreat through our parish. During adoration he brought the suffering of his son to Jesus. As he'd done so many times, he again offered himself in place of Ben. Soon after he felt intense pressure in the palms of his hands and the word, "pellegrino", filled his head and also the command, "Be my healer." The pressure briefly became pain and then faded. He didn't know what to think of it but when he shared this with me later, I talked with him about stigmata and that pellegrino is "pilgrim" in Italian. The name Jason means healer and he works in healthcare. We sat with the event, unsure of what it meant, but compelled to seek further.

On this day one year ago, Ben had a follow up CT, again scheduled arbitrarily, to check for reoccurrence. Again, we asked for Padre Pio's intercession for the nine days prior. Ben's scan was clear.  It is interesting to note that Padre Pio had surgery to remove a malignant tumor from his own ear.

I have tried to keep it hidden, but my own suffering has intensified lately. I cannot do the things I could do even two years ago. My muscle weakness is much worse and is affecting daily life. I struggle to clean the house, do simple chores, climb the stairs, and carry groceries. I'm concerned my weak eye muscles will prevent me from writing. I try to take a walk every day so that I can continue to walk that distance, but my body is heavy. I have a sense that my physical capabilities will continue to decline.

On this feast of Padre Pio, I marvel at God's works, at His hand in our life. I wonder what is next, but I do not fear. Padre Pio is known to say, "Pray, Hope, and Don't Worry!" a mantra I take to heart. Soon, we will go visit Padre Pio. We will be literal pilgrims and visit his birthplace, his tomb, his chapel. We will present our pain to his Home for the Relief of Suffering. Maybe God will take it from us, or maybe we'll choose to continue to offer up our suffering as redemptive. We are compelled by faith and by a certain saint who is said to be standing just this side of the gates of heaven waiting for all his spiritual children to enter before he can finally rest.

Once Upon a Time...

I dug this post out of the archives from seven years ago. It gives a little background on the title of this blog and highlights why Roma calls to us still. 

I was tuning my viola in the college music department atrium when I first recall laying eyes on a young man with curly brown hair and jade eyes. He rolled in the front door on roller blades, then clomped up the narrow marble staircase to class still wearing the blades, singing all the way.

In February 1996 I attended a master class in which this same man participated. He sang "Quanto e bella"* from the Opera, Elixir of Love. The visiting master critiqued that he had an excellent voice and technique, but lacked passion. The instructor then pointed randomly to me in the audience and said. "There is your love. You, in the white sweater. Sing it to her." He instructed me to act aloof and to pretend to read a book. The dutiful student began again with ardor.

Our paths crossed periodically on campus. I have a newspaper clipped photo of the large ensemble in which we both performed, he with the tenors, me in the strings. We weren't aware until years later.

I nannied throughout college and often had a young child along that I'd drop off with another care-giver on campus. One day I was helping a teacher move some things and Jade Eyes offered assistance. We finally exchanged names. Later I learned Jason found me attractive, "with eyes like a cat," but assumed I was the mother of the blond child and already taken.

In May 1996 I attended his senior recital and met his parents. Shortly after we were both hired by our mutual voice instructor to work for an educational opera company that performed each summer in Rome, Italy. That summer I worked for the company in the US while Jason worked his third season in Rome and we'd communicate the necessary details via international phone and fax keeping the calls as short as possible to save dimes. At summer's end we traveled together to Virginia to move the program's base of operations. After clearing up my single status, this is where our friendship actualized. Somewhere between religious discussions, duets, shared meals, and 45 minutes in Washington D.C. where we raced to the Washington Monument and back before our train departed, our friendship had been cemented. It probably didn't hurt that he was kind of a rock star, having just produced his first album with his brother.

Jason graduated that December and moved back home to Iowa to teach and give music ministry a shot. The next summer we were both recruited to work for the opera, but this time I got to be on location too. Jason greeted me when I arrived and happily showed me the ropes and the charms of the city. He treated me to a slice of street pizza. Once he serenaded me with, "Quanto e Bella" in the middle of Piazza Navona. I was sure he remembered, unless that's just what he sang to all the girls...

It soon became apparent that we felt something deeper. One evening while taking in the beauty of the Spanish Steps he asked if he might kiss me. I don't think he knew it was my first.



The program ended and our planes went their separate ways. Romance in Rome was aces, but we had no grander illusions. It was not long however, until the phone bills and mileage began to add up and by January of 1998 we'd committed ourselves to long-distance dating. I graduated in the spring and began teaching in St. Louis shaving two hours off the drive. The following summer, I finished off the final five by moving to Iowa. That opera season of 1999 Jason and I again found ourselves on the Spanish Steps. Well, "found ourselves" drastically undercuts the massive planning behind Jason's scheme to arrange the perfect night. But in the end, he asked if I might be his sposa.

August 3, 1999

We were married on the Feast of Our Lady of Fatima in 2000. We had dreamed a little of a wedding in Rome, but in the end, having the people we loved witness our vows took priority over setting. As a compromise, we took our wedding clothes with us to Rome the following month which was to be our last summer working for the opera. As a gift, the opera program's photographer spent an evening snapping our bridal pictures all over town.

June 2000

A year later, we bought our first home and moved back to Missouri. We grew up fast when Ben arrived and fell into the rhythm of life, love, and labor. We realized recently that we haven't been away together since our honeymoon nearly ten years ago. Ten years seems long enough. So to celebrate our first decade of marriage we will again visit the Spanish Steps.


At least that's the plan.

*Rough Translation: How beautiful she is, how dear she is the more I see her, the more I like her but in that heart I'm not capable. Little dearness to inspire. That one reads, studies, learns. I don't see that she ignores anything. I'm always an idiot. I don't know but to sigh. Who will clear my mind? Who will teach me to make myself beloved?

Update: 9/21/17

The plan was fulfilled, though I recall leaving a sick Ben behind with a true friend! We had a wonderful Roman anniversary, ahem nine months before Gigi's birth.

Seven years later, in the year of Fatima, we are planning to return again, this time, in part to share with our children where our story began. Maria will finally get to mangiare i nostri bambini (eat our babies). I suppose it would be easier and more accurate to show them the former music department 100 miles from home. Ma no, roma sta chiamando. But no, Rome is still calling.

But Only Say the Word

Ben had surgery in August to correct the deformity in his right leg that had developed from weak muscles not holding his bones in place. He'd needed the surgery for years, but we'd put it off since he wasn't complaining. Eventually all medical opinions agreed that it had become necessary to correct the leg in order to maintain ambulation in the long term.  Of course, it meant losing ambulation in the short term since he lacks the strength and vestibular balance to use crutches. Plus there was the pain of surgery and therapy vs the pain of skeletal misalignment. Risk vs reward rears its head.

The surgery involved cutting the tibia to realign the foot and knee, held in place with a plate and screws. Then realigning the big toe and fusing bones in the foot to create an arch and cutting and lengthening the Achilles tendon (again). Three months post op all was healing nicely with the exception of the tibia fracture. The bones were expected to have healed, closing the fracture created by the cut, but they had not. At all. The orthopedic surgeon decided to give it another month and if it didn't improve we'd need to intervene which would likely involve a bone graft, or surgery number 20. The surgery would reset Ben's recuperation and prevent him from fulfilling his dream of returning to part time second semester schooling.

This called for prayer reinforcements. A former teacher of Ben's offered to let us borrow a relic of one of her favorite saints, St Vincent Pallotti. I'd never heard of him, but I'm a strong believer of people crossing paths for a purpose and know that saints sometimes choose their causes. I gladly accepted the generous gesture. She'd made me a packet of information about his life and I was moved when I realized I'd walked right past his church, San Salvatore in Rome where his incorrupt body lies.

I found a novena to pray the nine nights before Ben's follow up appointment and each night, Jason and I held the relic in our entwined hands and prayed fervently for "Ben's bones to heal, avoiding surgery." The novena mentioned praying with a heart of thanksgiving as if our request were already granted. This was a small stretch for my, "Thy will be done," mantra of humility I typically adopt, but I prayed with confidence. Friends and family joined in. And though greatly relieved, I wasn't terribly surprised when after his x-ray one month later, Ben's doctor delivered the good news that the bones were healing and no intervention would be needed. Glorious gray had appeared where there had once been a solid black space between bones. Thank you God, and thanks for the assistance, St. Vincent. And thank you to all the other voices that helped lift ours. Miracle gets thrown around a lot, and I totally believe they happen. I don't know if this one would pass Vatican muster, but it swells our hearts and buoys our spirits and shows us a glimpse of heaven on earth. I also believe that if we hadn't asked, it could have easily gone the other way. Prayers are not always answered. I have confidence that there is a purpose in those denials as well.

The experience did make me wonder why I've never just asked for Ben's complete healing? Why have I never done a novena with the request for altered DNA? We have prayed for many small victories, but with the exception of my first demand to, "bring him back" when his newborn heart stopped, I've never again been emboldened to alter fate. (Wait, there was some futile bargaining for the life of a pet cat when I was a kid).

I do know I could not ask for Ben (and I, if shooting for the moon) not to have this muscle disease with the same confidence I asked for bone growth. But I don't know why, exactly. Part of me must know it is pivotal to our journey. Suffering is necessary and can be sanctifying, which is hard to understand, but I know it to be true. I wonder if I'd feel differently if I lived when Jesus walked the earth. Would we cut a hole in the roof and lower Ben down, grab at Jesus' cloak with faith, wash in the water with obedience? If so, what would we be seeking? Or would we stand with the majority in the square, skeptical of the blasphemous rabble rouser, egging his torture?

If I had to choose only one kind of healing, physical or spiritual, I'd choose spiritual. I'd rather be whole in spirit than body. That sounds like a classic prince/pauper, throw back the fish, chew the lion's net free fairy tale moral, and I can't speak for Ben, but healing is not just about cancer cells and heart rhythms. Wounds let in the light, scars prove our fortitude, suffering fuels empathy and creativity, add in some hope and optimism, and an ember is sparked. For by His wounds, we've been healed.

Rejoice!

When Dad's personal effects were being cleared from his office at work, a worn piece of paper was found taped to his computer monitor. It was a Bible verse, Phillipians 4:4-7 and has helped carry us through the gaping hole in our universe.

Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus. 

The following is reposted from August 2010 on the 5th Anniversary of my dad's passing.

Truck's Leaving

Wally 1943-2010

I have no words, yet feel compelled to write. My sister called with the news in the late evening of Thursday, August 19. My heart sank with the ring of the phone. My husband, Jason, had already gone to bed. I don't recall the exact words she used that ushered me into my new reality. There was an accident. It's Dad. He didn't make it. Something something... boat in Maine.

With heavy heart and disbelief I went to Jason. He'd awakened with the call. While I received the tragic news, "Jesus, remember me when you come into your kingdom," began playing on the ipod in our room.

My only thought at that moment was to get to my mother, alone two hours away, innocent and unaware of the policeman en route to her doorstep. Every other immediate family member was in a different state at the time of the accident and I was closest.

No one slept that first night. Jason, the boys and I arrived at 2 am to a house full of loving friends and neighbors comforting my mother. My siblings and their families arrived throughout the morning.  The next day was a blur of calls, sympathetic e-mails, thick tears tinged with half smiles or near laughter and an armada of food and visitors.

One year ago I struggled to accept my mother's mortality as she fought and won the battle against breast cancer.  I recall my parents returning from my mother's surgery to two perfect pink rose blooms in my mother's garden.  Yesterday the five of us went out to the cemetery to see about a  mausoleum site. When we returned a single pink perfect rose had bloomed. Where there were two, now there is one.

The single rose is the hardest part. It is the natural  order that parents die before their children. It is a loss we can  expect. We marry til death do us part but shove the potential from our  minds as we traverse through daily life. Death has parted my parents.  Though her children, family, and friends are there for her, there is no  substitute for my mom's best friend.

As my siblings shared our memories, we were struck by the realization that our father had sought each of us out earlier in the week to tell us we were so blessed.  It's easier to feel cursed in moments such as these, but when we look harder we can see the blessings. We're blessed to have each other. We're blessed to have no one to blame. We're blessed with our faith. We're blessed to have known him.

His imprint surrounds us. The book he was reading, his shoes by the door, his empty chair, the car retrieved from the airport containing his ball caps and glasses.  I try to etch his picture in my mind and the sound of his voice so that I won't forget.

Wally had a passion for his job. We knew he'd never really be able to retire and as it turns out he never had to. He adored his Purple Martins. None of us know how to make them return. He was crazy for his Cardinal's baseball. My son wants to know if we can still watch them play. Wally loved his family.  He was so pleased we'd be twenty at our reunion next year. Ten adults, ten kids. But as of the 19th, we'll be 19. That number is not so perfect.

Dad was a great Papa to his eight, going on ten, grandchildren. My siblings and I remember our father being a strict disciplinarian but by the time the first grandchild came along he was a big softy.  Every grandchild has been tickled with a, "Here comes the bumblebee out of the barn with a bag of honey under his arm."

My dad had his own funny little ways of speaking. He answered the phone with "Yellow?"  All flowers were hollyhocks. Casual shoes were clodhoppers. A gazebo or any outdoor seating area was a gazzabow.  When something wasn't right or someone crossed a line he'd remark, "throw the flag" or "that's a flag."

He loved the word "multisyllabic" and used it to describe anything that was complicated.  Other common phrases include, It'll put hair on your chest, Look both ways, Figure it out, Down the hatch, You'll wake the baby (when no baby was around), We don't need to call anybody (in the midst of a home project), and des colores. Whenever Dad was ready to leave he gave no warnings. He simply stated,  "Truck's leaving" and we'd scurry to comply. It's fitting that he left  us without warning. He wasn't one for long good-byes.

Wally was full of wisdom and was generous with advice. Many people have used the word mentor when describing him. We remember him telling us, "Success is having the problems you want,""That's a good problem to have," and, "Learn to love the things you have to do." He often remarked, "Now that's funny, I don't care who you are." "Everybody has a cross," is a phrase we all well know.  We have learned this week that Dad was emphatically wrong about this phrase, "You can count your true friends on one hand." Each of us have been enveloped in a flood of warmth and love from a sea of true friends. We are in awe of all the people who have told us how important he was to them even before the visitation has begun. I hope that he knows better now.

Paper Boy in Mourning

Bend, Don't Break

I feel like it's about time to get back on my horse and try to blog about something other than loss. I'm getting there, though loss is what fills my mind, lately. I'm sad. I'm sad for the wounded survivors trying to move forward without leaving their love behind. Yet, I'm hopeful too. Long days of suffering are over for some replaced with the peace of heaven and that is something to sing about.

I found a great source of solace on my trip to Phoenix. I met a group of women that I could relate to as mothers of medically fragile children. I had met some of them virtually through the trach message boards years ago. We had, I felt, an instant connection that I haven't easily found with other mothers.

My fortune while dining out with new friends

When I became a mom, things were not usual. My baby couldn't eat with his mouth, or cry audibly, or ever fall asleep in my arms without being hooked to machines. He came with nurses and alarms, odd holes and tubes scarring his body, and CPR instructions taped to his bed. He came with insurance woes, frustrating medical supply companies, and a team of specialists that scratched their heads wondering how he'd survived and speculating how his body would fail next. And bills, oh those bills. He came with loads of medications and intense therapy sessions, and a grueling round the clock schedule of care that turned us into skittish owls, and our home into an open door clinic with a steady stream of team members all working towards a multitude of minute goals. Today, Ben will tolerate room air for 10 minutes. Today, Ben will swallow 5 ccs of thickened liquid. Today, Ben will grasp a toy.

He did all that and more, of course. He soared. Some of my new friends haven't been so lucky. They are still in the thick of it and some won't ever be able to get out of it on happy terms.

When I was a new mom I felt like no one understood our life, even those who loved us most and tried. Some felt it wasn't worthwhile to work so hard and use so many resources to keep one sick child alive.  Some felt we weren't doing enough. Some just didn't know how to help or what to think. Neither did we.

Lest you think no one was there for us, I assure you, we were inundated with support. I still marvel at how it all got done. We may not have survived with our marriage and sanity intact without all those understanding friends and family and employers. You know who you are and we love you for it.

But the road was still lonely somehow and frequently misunderstood. We encountered many misconceptions. Strangers were often horrified to see us in public and seemed afraid of catching something. People with trachs can live normal, happy lives. They are allowed to leave the house. Yes, suctioning sounds gross and scary at first, but usually it doesn't indicate illness, it's just daily life. A trach and feeding tube, and even a ventilator are not always extraordinary means to just keep someone on the earth. Often, they are temporary, or make it possible for someone to achieve independence. Keep that in mind when writing advanced directives. Know what it is you fear as it might not be so bad.

People with trachs often can't vocalize because air escapes the stoma prior to passing over the vocal chords. If the trached person can force air upwards either on their own power, or with the help of a device that occludes the stoma, they can make sound.  People with feeding tubes sometimes don't eat anything by mouth. They have a button attached to their bellies or tubing down the nose that provide perfect nutrition. We weren't being cruel to our son when we happily ate dinner out while he rolled cars over his paper menu. We were modeling. The interventions saved Ben's life and allowed him to have as normal a childhood as possible. Actually, they allowed him to HAVE a childhood.

I'm not sharing all this for sympathy. I'm sharing so you'll know how wonderful it was, even after 11 years, to find myself surrounded by a whole group of mothers with so much in common.  We personify the phrase, "Ever bending, never breaking," and frankly, we are pretty fine individuals in spite of, or because of it. It's good to laugh about projectile PMVs, deflated Mickey's, and the you-can't-park-there-you-look-fine "police." If we must laugh and cry our way through this life, it's good to find others who know the language.

Maybe I share it too, so that if you find someone in a similar situation, you won't be afraid to reach out and let a weary warrior talk or sleep or scream. And can all the expectant parents out there just agree to think before saying, "I don't care what it is, just so long as it's healthy," when asked if they want a boy or girl. The unhealthy babies are wanted and worthy too.