Search Chandra's Blog
Blog Tags
"Apparition" "Art of Spiritual Warfare" "Best in Show" "Body of a Girl" "Exposure" "Gone with the Wind" "Half a Life" "Husband and Wife" "My Foreign Cities" "Myth of You and Me" "Open Your Heart with Gardens" "Stiltsville" "Substitute Me" "Temptation by Water" "The Bird Sisters" "The Book Thief" "The Guardian Angel Diary" "The Heroine's Bookshelf" "The King's Speech" "The Language of Light" "The Love Goddess' Cooking School" "The Mobuis Striptease" "The Peach Keeper" "The Provence Cure for the Brokenhearted" "The Wednesday Sitsters" "This House" "Unintended" 50th Book Club Prize Pack act 'as if' Adam Levine adoption adventure advice Alpha Male Ann Hood Anna Cole Atlanta attachment parenting authors autism babies babywearing bad reviews bats beach house believer Ben Bethany Hamilton Betty Smith Big Nate birderd birthdays biting Blizzards blog hopping blog tour blogging blogswap blurb body image book book clubs book tour Books and Books Boudreaux boys breastfeeding Bridget Asher brothers Buffalo News Caeli Widger cake California cancer caramel oat bars Caribbean Carol Shields Carolyn Haley cats Cayman Cayman Compass Ceausescu chameleon Charles Bukwosi Cherry Cheryl Chick Lit Plus Chickens childhood CHOP CHOSEN Christina Shideler Christmas Christmas cards chuffy Cinderella clothes coconut water color Colorado comedy community connected contests cooking co-sleeping cow milking craft criticism Crown Publishers cry it out Dakota Darin Strauss David Lipsky dawn Dawn Chorus Daybreak 27 Destined to Fail Diana Abu Jaber Diane Lockward DOG BLOG Dog Whisperer dogs domestic ritual Dr. Anna Leahy Dr. Karen Monroy Dr. Oz Due Uve editing editor education eggs Elizabeth Scarboro Emily Kennedy Erin Blakemore evening walk expeditionary learning Exposure Facebook fake it til your make it Falcor family family bed fan mail fans farm life favorite books feminism Fon Wang Forrest Free stuff friends friendship gardening geography gluten-free goats God Grand Family Grant Schnarr grey hoodie grief guest blog Gyllian Davis Hannah Shelton Harper HarperCollins Hayden HHarperCollins hockey Hoffman's Natural home homeschooling homework Hondiuras Honduras horses hospitals Huffington Post Huffington Post divorce editor ice hockey Ilie Ruby inspiration International Women's Day iPhone island living 'It Takes a Village' Ivan Jungé J Jane Austen jasmine tea Jeffrey Eugenides Jenna Blum Jessica Keenan Smith Jessie Jonah journals Judy Blume Julianna Baggott Kelly Simmons Kid History kids Kristin Kimball Labrador Laos Leah Stewart least favorite word letting go Lincoln Pierce Linda Davis Linden Lisa Belkin Lisa McKay literary agent live in the now living with less Lois Alter Mark Lori Odhner Lori Tharps loss Lost Boy love language love story Lucky jeans Maggie Nelson magic Maria Massie marriage Martha Beck Max Maya Ziv meat Meg Waite Clayton Melissa McNallan Melissa Senate memoir menagerie mentor Michelle McGee micro fiction mindfulness miracle Miranda July modern living mojitos momstinct money mothering MoxieMomma nachos NAIBA New Year Newfoundland Newfoundlands Nichole Bernier NRA Nutella NYTimes NYTimes Motherlode ocean Opening Heavens Doors optimistic orphanage paint Paleo Comfort Foods parenting patience Pay it forward persistence Perthes Disease Peter Pan phobia Piper pizza plot poetry ponies Portland Psychology Today publication publishing puppy puppy breath puppydom Pushcart Prize Q&A quilts Quinn readers reading Rebecca Gyllenhaal Rebecca Rasmussen Remy resolutions retreat review reviews revision ritual rockclimbing romance writer Romania running Sally Kim Samantha March Samoyed Sampson sangria school SCUBA secret confessions security senior project Sept 11 serendipity sewing sexting sexy SheKnows Book Club PIck of the Year SheWrites shopping short fiction SImon&Schuster simple life sister sister-cousin sisters slings smells snow snow day songs Sophie space exploration Spain Spanish spiders sshort fiction Starbucks stuttering style stylesubstancesoul.com Summer reading sunset Susanna Daniels Swedenborg swimming teens Thanksgiving the climbing tree The Four Ms. Bradwells" The Grain Exchange The Name Game Thelma Zirkelbach Therese Fowler THUMOS TIME magazine tingarita Tourettes tradition travel Twitter two lives ugly dolls unschooling Utila wedding whale sharks white wine William Faulkner winter Wisconsin worry write your life writing writing and parenthood YA Fiction yoga Zulu
Wednesday
May232018

In the Homestretch

Last month, I went with our oldest son to CHOP for one of several pre-op visits for his upcoming surgery--what will likely be the third-from-final in a laundry list of operations for the condition he was born with. 

 This will be one of the biggest--as Hayden's skull has grown, the bottom half of his face has not kept up and he is slowly losing his airway. As his surgeon was explaining the procedure--using interior metal bars to move everything forward and anchor his neck muscles to jaw/chin, his assistant was scrolling through sixteen-and-a-half years of clinical photos of our boy.

We all turned to the screen, momentarily mesmerized by the representation of time passing in the face of a bald, intubated baby, to a chubby-cheeked toddler, to a little boy with wild, blonde curls, a crooked, jack o'lantern of missing teeth, a shaved head, a mohawk, a scowl, pre-teen bravado, a smidge of sideburns and facial hair, to a grinning version of the handsome big kid beside me. Even the ever-serious Dr. Bartlett stopped talking and watched with a tiny smile.

These clinical photos against a uniform black background are for measuring symmetry and airway, for monitoring growth and the possibility of other complications developing, but somehow, they represent so much more. They reflect resilience and the tenacity of a baby who was once not supposed to make it to the end of the week, to a young man considering following in the footsteps of the doctors who have treated him. Here we are, spitting distance from the finish line, a handful of hurdles between us and graduating from the CHOP craniofacial program.

The thing that feels different this time? The journey on this is Hayden's. Before, his surgeries felt like ordeals for us, the parents, to endure. See us try to distract a baby writhing in pain with his beloved Lovey Tiger, to stop a toddler wigged from anesthesia from pulling out his IV, holding a little boy down for a catheter while he screams WHY ARE YOU LETTING THEM DO THIS TO ME?, sitting through the fifteenth viewing of Beethoven while a pulmonogist pounds his tiny back, standing with him in a crime-scene of a shower as we eke out two feet of bloody packing from his nose and sinuses. Now, as one of Hayden's more recent surgeons put it, J and I are relegated to the role of sherpas. It is our job to schlep his gear and cheer him on as he climbs the mountain of recovery, solo.

 

This time around, what can I do? I can sew symbols of strength and river stones into a weighted blanket for his recovery. I can brainstorm a month's worth of liquid recipes and make lists of distracting John Hughes/Quentin Tarantino movies to round out his pop culture education. We can coordinate, as we did today on another ride to the hospital for pre-op, about when he wants me and J with him afterwards, and when he wants his girlfriend and friends to come visit, and how he will communicate this.

 

Today, after his pre-op appointment, they called us in to look at computer renderings of the procedure, including a 3D model of what he will look like afterwards. I held it together until we were walking to another wing for bloodwork.

 

"Why are you teary?" he wanted to know. "I'm the one who has to go through this!"

"Honey, I wish I could do it for you."

"But why are you crying? I'm going to be fine."

"I know you are. It's just, that last face on the screen looked a little like someone else. And I love you."

I put my arm around him and squeeze. He's running a fever today, and a little achy so he shrugs me off.

"You looked all grown up. You looked like a... man."

"I'm ready, Mom. I've been ready for months."

I don't know if he means the surgery, or growing up.

Probably both.

Then he adds, smiling my favorite crooked smile and squeezing me back, "And I love you too, Mom."

* *** *