What was the miracle? Reflecting on our pilgrimage to Detroit.

For one month and two days, I thought over and again about how to write a follow-up on our trip to Ohio and Detroit for the beatification of Blessed Solanus Casey. I am asked often how the trip went.

It was difficult. As time and reflection increased, I realized how difficult it was. There was so much to plan and keep track of in traveling with Peter’s medical supplies, in changing our routine, our time zone, our climate. More than any of that, choosing to separate as a family, leaving two children at home, was the most painful part. We have been together for a great deal of time. The days of frequent hospital admissions are drifting into the past. I remember them vaguely, like the last time it rained, but the ground has dried and I no longer recall immediately how it felt.

Then I chose it. I chose to leave two kids at home because the difficulties and cost associated with taking so many toddlers on a plane. It was reasonable. But sometimes, the reasonable option hurts.

My heart broke a little returning as my three-year-old cried while leaving her grandparents. She seemed confused at what was happening. To spend a week at grandma’s house must have brought back memories to her, the unconscious type of memories three-year-olds recall. There is little we can do other than talk and cuddle to help her. For my eldest, we involved her in whatever we could. She visited. She even stayed at the hospital with Peter and me, until I realized how important her presence was in the stable makeup of her younger sibling’s lives.

Of course, we did look for miracles. We quietly glanced this way and that. What would it be?

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On the long drive to Detroit, tucked in the backseat of a gray sedan between a car seat and booster seat, with my back burning ever so much, I played in my mind what would happen if Peter were cured of his primary condition.

He has defects in sodium absorption. His TPN accounts for this defect. If he suddenly absorbed the sodium given him through TPN, it would result in elevated levels of sodium because of the higher volume administered. That would hospitalize him.

The day after our three-hour jaunt to Detroit (three hours each way), Peter was not himself. I paced until 1 p.m. before paging the doctor again on his care coordination team. We planned to fly out the next day. I would rather get this over with and just know. He could be just tired. There were times when it was like this: exhaustion, unable to keep his eyes open, fussing to sleep. Then a long nap would descend upon him and he would wake, right as rain. The waiting killed me.

Dr. Henry called the local hospital and we drove over. Peter fell asleep in Kyle’s arms. As much as I wanted this to be the crisis that would occur if he could suddenly hold on to his sodium, I prayed to God Peter and I would be on that plane with my husband and daughter the next day.

The results came in. Labs were stable as they have been for months. Arriving back to our host’s home, Kyle hauled Peter in his car seat upstairs to a warm dark room and he slept for three hours.

And he woke, right as rain.

The primary issue persisted. Arriving home, Peter began to taste food. His condition and early malnutrition (sodium is needed to obtain the nutrients from the food we eat) caused him to vomit with each feeding. Such frequent vomiting led to an oral aversion in which he refused all food by mouth. Gradually he began to drink water but would do little else.

On Thanksgiving, we gave him some whip cream. In cases like this, great moments do not require a bowl of whip cream Multiple tastings will do, a teaspoon is glorious. He kept on tasting. For days he would take repeatedly whatever we put before him. Two days ago he gradually consumed a couple teaspoons of a smoothie. It is remarkable to me. It may not be inexplicable but is remarkable.

What do we feel most? Mostly we feel the depth of our time at home. On Peter’s second birthday it will be five months since his last hospitalization. In a reflective moment, Kyle himself called this a miracle and I quite agree. It is true that babies like Peter often turn the corner at one year or one-a-half-years old. Their immune systems are stronger. For babies with Peter’s SPINT2 genetic mutation, the outlook improves remarkably and the risk of mortality decreases significantly.

We never asked for a miracle we could mail in for approval to canonize Solanus Casey. We prayed for what God would give us. If this is what God has, I lay my head at his feet in thanksgiving. If this is a temporary reprieve from hospital life, I am grateful for that, too.

We arrived home to reminders of our life, not just our mattress and not simply togetherness, but our entire life with chores, homemaking and work, the pain and glory of the daily grind. I love our home and our town better. I grew wiser in the journey.

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Marc wrote for Patheos in a piece called, “Pilgrim vs. Tourist”, “Now the pilgrim takes joy in the journey with the understanding that the journey only exists because of the destination. The destination lights the journey with joy.”

The mass and the prayers for Peter were the destination. And yet, reading this again, I rather wonder if our destination was also… home.

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Thank you for joining us in prayer. Thank you for taking this journey with us.

Leaving on a Jet Plane

It was the third night without sleep. On the first two nights, I woke around 2 a.m. and after an hour of trying to sleep again, my mind accepted this reality and began to make to-do lists. On the third night, the blame went towards excitement, the joy of taking my daughter on an airplane, on leaving California, on having another adventure.

We left on time. There were many bags packed. After deciding the night before I did not need to do a trial run of packing refrigerated bags of IV fluids for my son, I discovered they did not fit in one vessel but must be spread between two. We loaded the van and left, on time, to deliver two beautiful children to my parents for safekeeping during the course of six days. Six days without my littles. Six days playing on repeat in my mind the trauma of forced separations by hospitalizations. They were excited. At four and six years old, little else matters but being at the great vast space of Grandma’s house with boxes of Legos, trains and books at their disposal to dump out and play with all day with interruption only for meals shared on barstools and countertops.

We journeyed. My seven-year old’s bright smile at my presence in the back of the van carried us for the first hour. The two hours after that were spent in debating tiredness and mind wandered. I was wound too tight for my mind to wander, to create brilliant possibilities. All I could see was what lay ahead of me.

At the airport, I felt a nauseating feeling rise up inside as the anxiety of our next steps presented itself. We checked our bags. Witnessing our debate and the agreeableness of Peter’s cheeks, the gentleman asked if the smaller suitcase had baby things and told us we could check that for free. Gratefully, we unloaded one more bag.

“I’m a beast of burden,” my husband said, with three duffle-type bags around him and one rolling ice chest full life-saving nutrition for our boy. Miriam carried the coats. I pushed the stroller and carried my own bag of books.

Next, we came up to the security gates. With 90% uncertainty in my voice, I called the number provided by TSA. “We…uh…have medical supplies…liquids…I’m supposed to call.”

“Do you have a reference number?”

“Yes!” As I gripped the papers with shaking hands, that much I knew. I had the reference number. The person on the other line transferred me to Brandon, a supervisor. He said he would come out, and to look for a tall Asian man, 6’5, long hair and very handsome. I relaxed a little with his humor, particularly when he greeted us with a smile, possessed by a short, bald man with a great personality.

He moved ropes for us to help us through security. As he searched Peter’s medical supplies, I felt our private life on display, as if my underwear had just fallen out of my suitcase. I danced around supervising the supervisor.

“I understand,” he told me, “my brother was just like your son. We lost him when he was 21. I understand.” While anxiety still remained, his words and intention warmed my heart.

We found our gate, spent $5.09 on the water to make us smart (or so it says by calling itself “Smart Water”). Soon it was time to board the plane. I waited anxiously to see who would sit on the aisle. The man came as one of the last stragglers. He was uncertain about taking my husband’s window seat because he preferred bathroom access to the view.

The flight attendants helped, “we’re trying to get this family together.” She said as they moved people around.

Miriam volunteered, “You’re right, mommy, they are really nice.”

I explained all I could ahead of time to Miriam. During the drive, she asked questions that made logical sense following all the explanations of how security checkpoints operate. At the end of her asking what happens if someone brings dangerous things on the airplane and neither the flight attendants nor pilots nor good people on the plane can stop the person, what happens? I cut to the chase I learned from the Child Life Specialist and said, “No matter what, we will do everything we can to try to keep you safe.” I did not tell her about the 9/11 planes or all the shootings at public events that kept me up at night a week ago while we prepared for the trip. With that last reassurance, she moved on to other topics, which meant I hit the mark.

We received the good news that conditions were favorable and our plane would land one-hour sooner than expected. At hour 3.5, Peter was done with the sedentary lifestyle and began to cry angrily for freedom. Kyle stood him in the aisle while we made our descent and picked him up each time a person passed, so close to the bathrooms as we were.

Upon landing, we gathered our belongings and made our departure. The emotions continued in a swarm around my heart while we gathered his supplies, collected our luggage and used syringes in the airport which was, fortunately, quite quiet at this late hour. After a long drive and Big Boy Burgers, we reached our destination in a 15-passenger van with a cousin and his wife, desperate for sleep and happy to settle in.