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?
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.
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.
Thank you for joining us in prayer. Thank you for taking this journey with us.
We left early. 8:30 somehow felt much earlier than it ought to have but that is EST v PST. Miriam was unhappy to wake. After loading bags and snacks aplenty into a five-seat sedan, I squeeze into the back seat beside the car seat, rotated my hips to accommodate Miriam’s booster seat, helped buckled her in and we went on our way. After an hour I recalled that I packed only one bag of supplies, I may have forgotten the nighttime supplies necessary for connecting him to his TPN. We pulled over to a gas station and searched his ice chest. I packed the night time supplies but left off the day supplies, also a necessity.
