Five Essential Books for When Your Baby is in the Hospital

When your baby is ill, the world seems to stop. Sitting one that hospital couch, as he lay sleeping in the hospital crib, I stared out the hospital window at other hospital parents in the hospital yard, eating their meal because we were not supposed to eat in the Pediatric ICU rooms. Hospitalizations continued for us, on and off throughout the year. After the immediate crisis, I found my mind beginning to wander, to stretch, and I reached for a book.

Below at the books that were my companions and friends in our time of crisis. I give more than just book titles here, but types of books, because what resonates with a female Catholic writer in California with a background in psychology, might not resonate with everyone.

 

1. A Model in Suffering in Family Life

 

 

Call to a Deeper Love: The Family Correspondence of the Parents of Saint Therese of the Child Jesus (1864-1885)

By Zelie Martin

Why? She suffered for her children in their births, deaths, discovered abuse and lastly, that she should leave them prematurely when she learned she was dying of breast cancer. Sometimes you just need a woman who understands because she lived it.

What it did for me… I felt accompanied. I held onto the model of her reaction to her suffering. “Life is short and full of misery, we’ll see them again Heaven.”

 

2. A Model of Suffering in the Spiritual Life

 

 

Mother Teresa: Come Be My Light: The Private Writings of the Saint of Calcutta

By Mother Teresa

Why? Spiritual answers or encouragement to wait and hope that one day God would fill what he had emptied. Books about mothers may not reach the depths of reflection that come when written by radical saints. Persons in religious life often have more time for reflection as they have fewer worldly cares. This can help us hunker down to what matters most.

What it did for me… it gave me hope that the dark night would one day end. “There would come a time when God would fill what he had emptied.”

Alternative Titles: High power saint biographies like Teresa’s Life, The Story of a Soul,

 

 

3. Allegory

 

 

The Little Prince

by Antoine de Saint-Exupéry 

Why? We learn through stories. Good stories have good quotes. Good quotes come in handy when the going gets rough. The Little Prince keeps it real by being present to the pain, opening the reader up to wisdom. “But if you tame me, then we shall need each other.”

What it did for me… the book is comforted, connected me to my past, to my imagination and taught me lessons about the present. It was an image in therapy. Peter became my little fox, because I tamed him, I belong to him.

Alternative Titles: Harry Potter; The Lion, The Witch and The Wardrobe; The Lord of the Rings

 

3. Self-Help

 

 

It’s Okay to Start with You

By Julia Hogan

 

and

 

The Mindful Catholic: Finding God One Moment at a Time

By Dr. Gregory Bottaro

 

Why? The first to help maintain balance when you are trying to cope with the imbalance of hospital life and the trial of this child who was once inside you suffering on that hospital bed.

The second is to remind you how to think again amid the dings and beeps and endless hum of hospital equipment.

What it did for me… I discovered these two after the fact but recall vividly during the fact trying to implement their recommendations. From the first: walking, eating well and getting out in nature. From the second: finding space to think, attending to the present moment, listening to what I am feeling and thinking.

Alternative Titles:

 

4. Inspirational

 

 

A Million Little Ways: Uncover the Art You Were Made to Live

by Emily P. Freeman.

Why? To remind you that you are more than this moment and that even as these moments continue in the helplessness of hospital life, you have something to give, both to your child and those you encounter along the way.

What it did for me… This work inspiring the parts of my soul that could have died in crisis: the creative part, the artist, the one who seeks beauty.

Alternative Titles: Introduction to a Devout Life

 

5. Distraction and Daydreaming

 

 

Floret Farm’s Cut Flower Garden: Grow, Harvest, and Arrange Stunning Seasonal Blooms

By Erin Floret

Why? It is a mental vacation from your surroundings. If you choose nature for your distraction, it has positive psychological benefits. As does immersion in beauty.

What it did for me… I did not need to plan my garden beside my son’s hospital crib, but it helped remind me that a life waits for us ahead. The beauty of the photographs fills me in the moments when I looked at them, the text engaged my brain in planning and problem solving, the aftermath was I dug in, literally, when we returned home and found a therapeutic exercise be it in weeding, planting and mowing the plants down with an electric hedge trimmer.

Alternative Titles: Miss Mustard Seed Look Book; Sage Living;

 

Included in this and still Essential, Literature

 

 

Kristin Lavarnsdatter (high end)

By Sigrid Undset

 

and/or Cannery Row + Sweet Thursdays (low end)

By John Steinbeck

Why? Quality literature (make it stand the test of time) has complex character with whom we can engage, feel for, and love without effort. This is helpful when we are pouring ourselves out in real life, when empathy has run low, when the world looks dark.

What it did for me… I stopped binging on television shows with require passive engagement and began using my brain again at the end of of a mind-numbing hospital day of movies and internet scrolling. When at home, I stopped self-medicating with alcohol and learned how to actually reset my brain instead of numbing it.

Alternative Titles: Father Brown Stories, books by Jane Austen (high) or Evelyn Waugh (low)

 

And books can geek out on

(for me they have to do with writing)

Gwynne’s Grammar

By Gwynne

The Memoir Project

By Marion Roach Smith

Mystery and Manners

By Flannery O’Connor

 

Why? To remind you that you are more than this moment, that as much as it consumes you, you have an identity other than “mom.” You may not be able to engage in your favorite hobbies of woodworking or upholstery or mountain climbing, but you can read about them and imagine yourself at them, which does actually contribute as a form of practice.

What it did for me… just that.

Where Wonder is Lacking

A review of the film Wonder, better late than never (and a little longer than normal)

I saw the trailer for Wonder through social media. I was in tears. Others saw the movie. They told me it had a great message about bullying. I waited for an opportunity to see it.
After my son’s third craniofacial surgery, we were passing the time between tears in the hospital room and I saw it in the movie selection, Wonder.

 

Image result for wonder film
While strong in many parts, and overall, pleasing, I felt bothered at the end. Why was that? My conversation with Peg Langham, Nurse Practitioner for UCSF’s craniofacial team revealed why.
It was interesting to me that friends gravitated to the anti-bullying message. I heard from others that the movie did a great job revealing the experience of the sibling who is in full health. The conversations between mom and daughter were, by far, the most poignant to me having already seen the best speech between mother and son in the trailer. This is a pain that lays on the shoulders of medical moms, how to care for the others who need less care. I could hear my daughter’s words in what her daughter said. It was a step up for Hollywood to show a neglected sibling who was not bitter, resentful or rebellious, just lonely and longing.
But while the movie showed the mother’s anxiety and vigilance, it did not show her perspective or her son’s perspective gained from having gone through medical life. As Langham put it, there are certain strengths they did not touch on. One does not go through that life neutrally. It either breaks you or builds you in remarkable ways.

 

The movie based on a book. The book is written by a woman inspired by an experience in which she responds poorly to her child’s reaction at the sight of another human being whose face was deformed. Indeed, the conversation between a friend’s mother and her son (the friend) is the best in the entire movie. It is the outsider’s perspective looking in, which may account for its strengths and weaknesses.
Auggie suffers from a genetic condition, Teacher Collins syndrome, which caused severe facial abnormalities, and hinted at issues with breathing, eating, but not sight or speech. He has had 27 surgeries. He would have been to our same type of clinic, seen our same type of doctors. Were it set in California, no doubt the hospital would have been ours.
My son suffers from a genetic condition which caused a cleft lip and palate. Genetics being what they are, it caused an array of other things as well. We do not see that with Auggie. He has no vision issues, no speech issues, no breathing issues, and seems to need no follow-up care during the one school year we see him. It is a simplified Hollywood approach to creating a character that could repulse some but is otherwise totally normal, so normal folks can still identify with him.
Were he real, we would see one or two doctor appointments and, for a kid like him, I suspect they would go like ours. Everything he imagines experiencing at school, he would actually experience with his nurses and doctors. It would be a place of incredible love, cheering for him, delighting in him, celebrating him for who he is. His mother, father and sister would not be the only ones to really see him. 27 surgeries are not done anonymously. 27 surgeries mean hospital stays for this mysterious condition. That means you get to know the nurses and doctors. Relationships are built in those moments of trauma when the staff is doing everything they can. The emotions are so raw at times of crisis that bonding happens fast.
And life continues to move. The nurses in my son’s unit took me to triage when I thought I was having a miscarriage. They grieved with me when my daughter was stillborn. They talked design with me when I was lonely. They held back tears as I cried at my son’s pain.
Langham put it succinctly, the rewards in the film were external. In the end, with Hollywood flair, Auggie gets everything he longed for: recognition, love, cheers, a school-wide award. The bad kid is sent away and everyone becomes his friend. This isn’t real life. And that bothered me.
The rewards are internal, not external. For every person who learns my son’s story, there is another stranger asking me a question. For every friend who wants to hear exactly how the palate is lengthened, there is a family member who cannot remember that each fever means a hospitalization. That won’t change, but we change, and that is a good thing.
I do not like things built just to pull at heartstrings. It is deceptive and painful when you know it can never be. My son is young and has not been bullied, but I can imagine the heartache or anger for those watching this who know how romanticized the vision is. External total validation is not the goal, though it would feel good. It is nice and tidy for those who do not actually live it. Matthew Crawley walks again. Auggie gets the award. Everybody cheers.
It is better to have this film, then not to have it. It is a step in the right direction. There were wonderful moments in this movie, but lacking the insider perspective, it lacked the insider’s strength. Repulsed by the external appearance, it looked for external validation.
It is true that kids who suffer can have an impact on the world around them, but not by fitting in, overcoming differences, but rather by waking people up to the world of suffering with joy, of not letting suffering define life.
In the back of the church, I lifted my son’s shirt to push pain medicine through his g-tube. His exposed torso showed off his g-tube button, his Broviac and Broviac dressing. A man looked on while my son laughed, sang and pretended to be a monster while I took care of business. “He actually just had surgery three days ago,” I said.
“Ah, poor little guy,” the man said, yet I could hear in his voice he did not believe it. Peter was not poor. At the sign of Peter’s joy, I could hear in the man’s voice, wonder.

 

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Some people suffer every day, and others who do not, think, “I couldn’t handle that,” but you could. Life goes on in the midst of suffering. I hope our kids can at least teach us that.

How does it feel to be home?

How does it feel to be home?

Well…

The long answer:

I go from being afraid for his life to seeing him run down the hallway, squealing at his siblings’ antics.

I go from him being watched by brilliant medical professionals to being the primary eyes on him.

I go from loneliness of wandering and sleeping in a city by myself to togetherness, the reunion of a broken family.

I go from a bubble personal space to the strong shoulder of my husband, and the cuddles of my children.

I go from meditative silence to multiple children, screaming and whining.

I go from isolation, with friends only in touch by email, to seeing and connecting with a husband and friends I love.

I go from a daily routine of reading, writing and learning to endless interruptions.

I go from a terrible mattress as bouncy as the floor to the greatest mattress in the world, 100% Pima cotton sheets and a colorful fluffy bedspread.

Basically, I go from sacrifice to another,

From loneliness to fear,

From contemplation to the busy life of a housewife parenting four kids.

Still, I would rather be home.

 

The short answer: Good.