Pilgrims' Home

x We were sitting in the living room and laughing last night. The kids went to bed and my father-in-law asked, "Hard to believe where you are today compared to a week ago, right?" A week ago we were sitting in a room on the general pediatric wing watching our daughter writhe in pain. We were in pain as parents unable to relieve our daughter's suffering. Today we are sitting in the living room playing "Head's Up", watching football, eating Ramen bowls, and organizing winter clothes because Madeline (and Maggie) spent the majority of the day outside with friends. Madeline is making her way up and down the stairs. Currently, she is upstairs enjoying companionship with nine adolescents watching Jumanji and eating excess amounts of candy.  Living in the moment is an important practice to learn, yet sometimes holding onto an image of the future is equally important. There were times last week that I couldn't see seven days ahead and wondered if we would ever g...

It’s the fire in my eyes, And the flash of my teeth, The swing in my waist, And the joy in my feet. I’m a woman Phenomenally.   From Maya Angelou's poem, "Phenomenal Woman"   She woke up fierce and determined. This is often how Madeline wakes up as she enters the world with tenacity and force. I like this about her even when it feels too intense. I've missed it over these past days as she sits silently, looks listlessly, and wonders when she will feel better. But today we got a glimpse of her fullness. She woke up and pounced out of bed (pounce is not an exaggeration). She wanted to ride the wheelchair through the hospital. We discussed the plan for the day largely determined to break out of the hospital and go home. We had four goals: eat, shower, get dressed, and use our words with the medical team.    The doctor stopped by around 8:00am and asked Madeline a question. Madeline responded with a thumbs up. I said, "Please use your words," and the docto r ech...

She climbed into the wheelchair, and we began our second "walk" around the hospital. Sitting up for 30 minutes is a three-times a day goal, but only moving from the bed to the chair to sit up has been less than enjoyable for scheduled activity. We needed something more and sitting upright in a wheelchair offered a bit more distraction while strengthening the muscles. We needed permission to move beyond the room and about the hospital because of Covid, but we masked up and took our second trek. When we entered the atrium, I noticed Madeline waving. The first time she did it, I thought she wanted our attention (using words is still painful - and remaining silent has also become a coping strategy). Then she did it again and again; she waived at every person she saw. Everyone is in masks, but people eye-smiled. I guess we have learned to see smiles through our eyes during the pandemic. Maybe that is one bright spot of the last few years, we pay closer attention to one another...

"He went and proclaimed God’s salvation to earlier generations who ended up in the prison of judgment because they wouldn’t listen. You know, even though God waited patiently all the days that Noah built his ship, only a few were saved then, eight to be exact— saved  from  the water  by  the water . The waters of baptism do that for you, not by washing away dirt from your skin but by presenting you through Jesus’ resurrection before God with a clear conscience."  1 Peter 3 When I would teach or lead conversations on hard questions like abuse, racism, or addiction, I almost always ended class with a prayer and the closing line, "Drink water." To be honest, I am terrible at following my own advice. But when the brain is learning new things and the body experiencing stories and revisiting past/current trauma, we need nutrients, especially water. Madeline needs nutrients, especially water. Announcing to one another to "drink water" is similar to Martin Luther...

I do not like snails. I've said otherwise, elsewhere ,  but for the moment, I change my mind. I want the world of rabbits, cheetahs, and hummingbirds. Snails are the pesky creation-revelation that slowness belongs to the Kingdom of God .  The Lord is merciful and gracious, slow to anger and abounding in steadfast love. Psalm 103:8 Don't overlook the obvious here, friends. With God, one day is as good as a thousand years, a thousand years as a day. God isn't late with his promise as some measure lateness. He is restraining himself on account of you, holding back the End because he doesn't want anyone lost. He's giving everyone space and time to change (2 Peter 3:9, The Message) I know this is out of context, but the character of God as patient and time-wise is consistent).  I prefer the revelations in creation that point to speed and productivity. ("Lead on; don't slow down unless I tell you" 2 Kings 4). But this is not the way and pace of faithful livi...

I woke up this morning next to Madeline in the parent-bed in PICU. The nurse noticed my "hospital hair" and congratulated me on my first night's stay. Lindsay stayed two nights in a row earlier this week. The morning after face and hair is something, so unless we go home to shower and recover, some of us fair better than others. Here are two photos of us after our night's-stays. Who fairs better? One of us has an incredible face for radio.

We are not out of the woods yet, but we are improving throughout last night and this morning. Madeline has eaten two small meals and kept all of the food and oral medication in her stomach. This is great progress. Wednesday was the surgery, and they call this Day 0. That makes today Day 3. I hold the Jesus story as a sign of hope, "and on the third day, he rose...." I am holding the power of Jesus as the resurrected one and great healer. God continues to show up as gentleness, healing, and hope through our friends, your prayers and messages, through the medical staff, and through sheer presence in our ICU room. I find myself praying God's presence for other's in ICU, including one patient who celebrated his 13th birthday this week.   Madeline is still experiencing lots of pain and was registering at levels 7-9 throughout the night and into this morning despite an excellent pain management routine. We received another nurse today, so we are giving thanks for the expand...

"We're going to cure the world of its pain." I remember hearing this line on Dopesick, and I was physically ill. On one hand, I believe in a God who will cure pain and will remove suffering. But on the other, there is a reality in this world that pain will be persistent. Yet we try to eliminate pain from the world on a daily basis; our economic system prospers on quick-fix messages of relieving suffering and pain. Synthetic drugs will not be the solution. "There is a lot of pain in the world", I have been known to say. Living in the presence of pain is no small thing, yet we do it everyday. How we do this is my question for today.   I have tried to be positive in this blog and will return to my hopeful way of writing later today or tomorrow, but right now I am lamenting the presence of pain in Madeline and the confusion and sadness I feel in watching her suffer.   We are watching the pain in a tiny, little body, and it is excruciating. Do I wish there was a drug...

  Short on words this morning: pray Madeline gets up and around today. Pray for mom as she recovers from a short night's rest. Thank you for the prayers this week! How beautiful upon the mountains are the feet of the messenger who announce peace, who bring good news, who announce salvation, who say to Zion, “Your God reigns.”

The morning has been difficult. On the bright side, Madeline is an honest and aware patient. Though she offers minimal words, she offers clear messages. She names her feelings, her pain, and her needs. She knows when she wants to adjust and how. Her ability to be clear and direct is a often intense but very helpful. On the recovery side, Madeline is pretty uncomfortable and head movement is difficult. Her neck muscles are very tight, and her willingness to eat is quite low. Pray for energy to sit up and shift her neck so that the muscles do not get too sore or stiff. Eating will strengthen her ability to respond and move. As I finish this blurb, Madeline woke up and asked to adjust. She showed strength in her neck and moved several more degrees from right to left and even held up her head for a few seconds as we adjusted. Here's hoping for ongoing movement. Amidst everything there are three stories of blessing worth sharing.   The first blessing is the  amount of laughter ...

We made it through the night, but not without significant nausea. When the nursing staff asked us in pre-op whether Madeline has a difficult time with anesthesia, we were unsure of the answer. Now we know. Yes, she does. Yesterday afternoon was mostly sleepy time; we tried some oral pain medication around four, and she immediately threw it up. We have been managing pain mostly through IV medications.    The episode of throwing up was comical. Madeline had been sleeping prior to receiving the oral medication, yet since she was waking up, the nurse was rightly eager to get something in her mouth and stomach. The hope was that she could then sit up or move around. She ingested the medication and became very alert. She yelled, "Help me, I am going to throw up." We are amazed at her ability to make her needs known.   Nurses scrambled into the room to help. When Jody (the charge nurse) came to her bedside to clean up the mess and soothe Madeline, she spoke her first words. She ...