Chapter One: The Art of Paradox
Surrendering to the Wholeness of a Memory
“Oh, Shrek. Don’t worry, things just seem sad because it’s dark and rainy and Fiona’s father hired a sleazy hitman to whack you. It’ll be better in the morning. You’ll see.” -Donkey
The space between the night of the accident and my first blog entry is the span of eleven days. In that time, William had been through a surgery to debride and dress his wounds with OASIS Burn Matrix. This progressive treatment was not typical of burn management in 2013, but is better known over a decade later for its regenerative properties when applied to second-degree burns.
As you might have gleaned from the email I sent on the night of William’s accident, I was eager to find a hospital where both my OBGYN and the pediatric urologist monitoring baby Henry had privileges. However, it didn’t take long to realize our good fortune of being transferred to a hospital where William was under the care of doctors who were plastic surgeons first and burn specialists second. I now credit the medical mesh derived from bovine intestinal collagen for saving my toddler’s face from severe scarring, and hold a space of word-less gratitude for the team on the 6th Floor Burn Unit at Nassau University Medical Center who worked tirelessly to save his life.
William came out of the operating room from his first surgery covered in a layer of silver antimicrobial dressing that was sandwiched in between the OASIS and gauze that wrapped from his head down to the tips of his fingers. It was a strange sight to behold, so I told myself he was a little knight in chainmail fighting for his life. Helpless except to find the bright-side of each moment, I wielded my own sword of optimism. No, I didn’t always believe the narration I chose for the plot I did not want to experience, but I remember the buoyancy of moments I consciously chose to reside in love instead of the fear pervasive both in and around me—a constant pull that was so potent, a nanosecond of negativity might have pushed me tumbling down the rabbit hole of despair.
Perhaps then, the battleground was in my mind alone, although the metaphor reminds me of what was at stake, along with the weapon I might gather from this experience.
It’s said that a shift in perspective is a miracle, and I’ve grown into the eyes I need to see how the story I lived and now tell is woven of a million small choices that paint a rainbow of inspiration. No, I cannot empirically validate my pathway. Yes, I will only ever know one outcome, and the best-case-scenario is something I do not take for granted. Furthermore, I heed the multitude of lessons gathered that have expanded my horizon and tapped and endless source of compassion for any soul who has fought an unseen battle to create hope.
Burns are as unpredictable as they are misunderstood, and my crash course in burn management came with an education I never desired. Many times over a decade of healing, I’ve stumbled upon casual discussion of someone with a “third degree burn,” who was not hospitalized and quickly recovered. However, my fluency in burns can write sentences composed of, “full or partial thickness” along with “stages, sensation, nerve endings, and percentage of body wounded.” Words like “donor site” and “harvesting” are tied to the graft surgery necessary to prevent complete disfigurement in severe burns—generally speaking, this is required of third degree burns that injure a high percentage of skin, which the largest organ of our body. And since burn survivors walk a lifelong journey of acceptance and recovery that is both physical and emotional, “keloids, compression garments, contractures, itching, burning and scar revision” are words that run parallel to “PTSD, hidden anxiety, and shame.”
My familiarity extends to prevention, because I’m the mother of a survivor and have written mental books on all the things I should have, could have known or done better, beginning with a cool damp cloth that would have prevented William’s pain in the immediacy of the injury. For, it is the very air we breathe that stings when it brushes up against wounded flesh, and likewise all that’s swiftly sucked out of my lungs by the force of maternal guilt.
I’ve lived to tell the tale of surviving the inquisition of a social worker who pointed out my failures well noted, and I speak it with footnotes of every expert who likewise stumbled along with me. From a botched Foley catheter that led to unnecessary infection to a mis-order of morphine that would have led to overdose had the nurse not caught this mistake, I remember how the lines between good and bad blur in all the ways that make judgment a double-edged sword in the realm of parenting (with or without an accidental injury that comes with the label, “bad mom”).
No, I wasn’t paying attention to what was going on in my kitchen when the pot crashed down.
And yes, I wish I could erase this truth from the timeline of my life.
Instead, I’ve worked hard at embracing all that I could not run from, cover up, avoid, or re-write.
I’d like to say I leaned into the vulnerability that was my birthplace of growth, but I was pushed, and fell fast and furiously into the unknowns of life and motherhood. Only now can I see how the blog I created is the safety net that caught me, because each hope-filled word I wrote about “My Boys William and Henry” drew an invisible thread of strength between the moments I was never strong enough to endure, but did—by the grace creative expression and the authentic connection it facilitated.
The 19 entries I went onto compose chronicle the latter half of our experience, which leaves me with the sense that a wide gap of stories have been lost. Indeed, so much transpired in those early days that remains missing, beginning with the immediacy of the trauma I’ve chosen to leave in the graveyard of drafts long laid to rest in a folder on my computer.
While I once shared more in depth about the accident and moments surrounding it, I’ve written myself too far away to look back. And then there’s that nugget I gathered in a burn support group about how those who are still close to the trauma they experienced will share stories in great detail. As healing unfolds, the lens widens, and ultimately, one shares from a place of acceptance. I practice the latter only because I’ve exhausted the process of the former, but note that conscious choice is what negotiates the difference between remaining a victim or flourishing as a survivor.
Transformation requires effort, and one of the things we must address if we desire to heal is the relationship we have with our memories.
In the case of trauma, Peter Levine and Ann Fredrick remind us in Waking the Tiger: Healing Trauma that, “Trauma is so arresting that traumatized people will focus on it compulsively.”
Indeed, I could resurrect my memories complete with gore and a sprinkling of suspense for more exciting reading, but I think of the mother who might stumble on these words after a late night google search in need of solace and camaraderie. She who has witnessed a severe burn will have enough haunting memories to transcend, and while I am untethered from a time I believed the sight, sound, and smells of burn trauma were inescapable, the veil to my past is thin. Yes, my hyper-vigilance has softened, because I no longer believe another accident is lurking around every corner, but I orbit on higher alert than most mothers I know.
Ultimately, while I once felt suffocated by the stranglehold of guilt, a prevalence of joy now fills the expanse of my lungs.
So it seems, I’ve remembered how to breathe fully—and what remains in my memory of a time I once considered a “beautiful crisis,” is a paradox of emotions that dance to the soundtrack of the movie, Shrek.
Yes, hope can float in the strangest, most unexpected ways, but I smile thinking about the TV one of the nurses hunted down after William’s first surgery and wheeled into our room. It was strapped down to a cart reminiscent of the library of my public school in the 90s, but with a DVD player of the early 2000s long missing its remote.
Eddie brought in William’s favorite movie from home, and Shrek played on repeat through every poke, prick, evaluation and dressing change. From the beginning preview of Jack Black’s Kung Fu Panda William would say, “Dat’s weally funny” before giggling his way through fart bubbles, the chaos of fairytale misfits, and the jokes of a quirky talking donkey. Not lost on me was the irony of Shrek as a pessimistic ogre turned unlikely knight in shining armor, with a reluctant valor fueling his adventure from swamp to true love’s first kiss.
As soon as the movie ended, William would insist on watching it again, immediately. The remote-less TV at the foot of the bed required the process of untangling myself from his IV and feeding tube to pull my heavy pregnant body up to hit rewind—an unlikely but crucial component of his pain management. There were nights I longed to sleep, but William’s need for snuggles and Shrek were constant, and I fell into the habit of answering emails on my phone or playing Candy Crush, temporarily losing myself to the engineered colors, sounds and sparkly milestones with levels that would bring me forward, out of the unknown I was living—until I ran out of lives and started over again.
Hope can float in the strangest, most unexpected ways…
Eventually, we were discharged and sent home for a week of healing. While it was an unlikely scenario, there was a small chance the deeper burns would heal organically so as to avoid graft surgery. That’s when I started the blog, with William curled up by my side holding a Shrek doll someone gifted us—one of the many thoughtful gestures from prayers to meals that fill up my memory of the good within our midst during a time of adversity.
The first five entries that follow pick up the story with the news that William was returning to the hospital for graft surgery during the 37th week of my pregnancy, which speaks to the miracle it was that Henry remained safely in my womb in spite of his birth defect that was of great concern.
Over the years I’ve fielded many comments about the ways we were “lucky,” beginning with the bicycle helmet it is assumed prevented a more extensive burn to William’s face. Left unspoken is what I witnessed in the process of removing that helmet in the immediacy of the injury, but any rebuttal would bring me too close to the parts of this story I chose to surrender for the sake of healing—a journey, which at some point asked that I bury the weapons which no longer served me.
I considered the well-meaning observations that if the accident had not happened—preventing the appointment I was heading to regarding an impending induction for surgery on Henry, a different course of events would have transpired by the hands of medical intervention.
But even if it’s true that the pot crashing down prevented an unnecessary induction, I’m not sure this “truth” would serve to pacify the tumult of the matter or justify the suffering of William.
Instead, what I do like to consider is the possibility that the power of prayer intervened, and my boys William and Henry both healed by the grace of God.
Rationalizing the unfathomable is dependent on your unique lens and what you choose to believe—as in the case of my worth as a mom who by all standards “failed,” but played the role of heroine in all the moments she showed up with love.
When all is said and done, it lives on as a story with complexities I no longer seek to understand, but would rather hold with the wisdom of Shrek—the ogre who is like an onion with many layers.
Content Guide to Chapter One: The Art of Paradox
April 8, 2013: William’s Update
April 9, 2013: Henry’s Update
April 10, 2013: Change, the only constant…
April 11, 2013: Moving Forward
April 12, 2013: Out of Surgery and resting
How This Book Works
April 8, 2013: William’s Update
As expected, William will need skin grafts for areas on his left shoulder, chest and right arm. Since today's visit was 11 days from the initial burn, the areas being watched aren't anticipated to shrink much more so it is best to go ahead with this surgery. We will admit at the hospital on Wednesday, and his surgery will be at some point on Thursday. We will likely be at the hospital recovering through the weekend.
While I certainly am not looking forward to repeating the process of holding William as they put him under, seeing him in pain after the surgery and the regression in his behavior that will follow, I am somewhat relieved that the surgery will be done so that he can truly begin his healing process. He hasn't slept more than 3 or 4 hours at a time since this all happened due to the discomfort of the deeper burns...and the doctor's visits are always difficult as they pick, poke and prod at his bandages which is very painful. While there will be initial pain after the graft, the burn pain should subside after the new skin is in place and from what I have been told time and time again, children heal miraculously well so this all should be over for him soon.
Tomorrow I have my OB appointment to see what is going on with Henry, but I am hopeful that I will be granted just one more week! That is really all I need to see William through the hardest part of this mess. I am optimistic but keep the prayers coming.
For now, we are cherishing the time we have at home...play, laughter and nourishment are our three priorities. William's new red bicycle is his current obsession and because of this, I have broken my "no outside toys in the house" rule and he rides it in circles through the house while the movie Shrek plays on repeat (as it has been for the past 11 days...but who's counting). His new favorite line after I tell him that I love him is, "thank you sooo much." Little stinker.
Catherine is doing very well considering all of the changes of late and handling the news that William and Mommy are going back to the hospital again like a champ. She is one tough cookie, my little girl.
As for me...I am holding things together as best as I can...trying to stay focused on the present otherwise I get totally overwhelmed. Everyone is commenting that I am so strong and poised but trust me, I have my meltdown moments as I am just downright exhausted and let's face it....at 9 months pregnant...a hormonal mess! I am just coping and putting one foot in front of the other as any mother would.
Thanks for your prayers, encouragement and support. I'll be back with Henry's update tomorrow.
April 9, 3013: Henry’s Update
I cannot convey how relieved I am to report that Henry's condition is no worse than it was last week so it looks as though my prayers have been answered for time and I will be able to see William through the surgery and hopefully his transition home.
Further, my amniotic fluid is "fantastic" which means that while things are not functioning as they should in Henry's system....it is still "working" quite well considering the obstructions so I think that while the surgery is necessary, I am not as worried about the kidney damage as I initially was. Thanks to all of the meals from our family and my incredible girlfriends I regained the weight I had lost during William's hospital stay and there are no apparent signs of labor so I am not worried about anything spontaneous happening during the next 5 days at the hospital for William's surgery.
For now, we are enjoying our last night at home before we are back at Nassau University Medical Center in the Burn Unit tomorrow. I will continue to keep everyone posted when I know more details about William's surgery, etc. but at least we know Henry is right where he needs to be for at least another week!
April 10, 2013: Change…the only constant in life…
This morning we packed up, took William to breakfast and arrived at the hospital by 11 am. With our bags and a cranky William in tow saying, "I don't want to go here I want to go home," we were greeted by the head nurse with, "It's nice to see you but why are you here? You should have been called and told your surgery was pushed to Friday."
Let's just say that with a simple glance, the nurse scurried off and the resident doctor arrived faster than he ever has and had to explain to a very frustrated, 13 night sleep deprived and hormonal 9 months pregnant woman whose 2 year old is going through a very painful and difficult time why a simple phone call wasn't made to let us know the surgery had changed. I might have made this more intimidating than his first time in the operating room but he handled himself quite well and my labor didn't kick in.
Turns our there is no explanation for the lack of communication. They totally messed up. Yes, the poor little guy had to go through another dressing change...and it is hard to have to go home and endure another sleepless night and then face the emotional process of trekking back to the hospital tomorrow but the good in all of this is that apparently the head doctor at the hospital has "taken a special interest in Williams's case" and is insisting on doing the second surgery and can only operate on Friday.
While the doctor initially slated to do the surgery has an excellent reputation, if we need to wait just one more day to have a doctor who has been practicing longer and is respected even greater, then we wait a day and have the best possible surgeon operate on William. We've come this far...
While William has great days, nights are rough with him as some of the nerve endings are starting to grow back and so his pain has increased. It is hard to keep him comfortable but it's just two more nights and then the grafts will help with this. Please keep praying for his next two days to be as pain free as possible and for his surgery to go well on Friday. I'll be back tomorrow to confirm that things are still playing out according to plan.....
April 11, 2013: Moving Forward
We are checked in and are through all of the poking and prodding for today. William is happy considering he knows where he is. The nurses and doctors are all excited to see him with a personality....he didn't have much of one the last time we were here. He has been spoiled by his favorite nurse Pat with cookies and a donut....and she even figured Mom needed a break from Shrek and it looks like her suggestion of The Wiggles will be on replay for the rest of the night. At least William is happy but I told her if he is still watching it during her next shift I am wheeling the TV and our bed next to the nursing station so she can enjoy The Wiggles with me!
So all things considered we are in good spirits and settled in. His surgery is slated for first thing tomorrow morning.
Until then....it's a wiggly party....
April 12, 2013: Out of surgery and resting
We made it through the surgery and while it was longer and more involved than the doctors initially thought, William is stable and resting and should heal well. I will be back with more details tonight or tomorrow. Thanks for all of your thoughts and prayers. Xoxo
How This Book Works
To read Blessings in a Burn Unit from the beginning, you might want to go back and read the introduction and prologue linked here:
Prologue: On Resilience & Motherhood
Introduction: Perspective and the Power of Narrative
Then, you can continue reading:
Chapter Two: The Space Between
Chapter Three: The Science of Happiness
Chapter Four: The Birthplace of a Miracle
Chapter Five: The Artistry of Faith
Afterward: A Note on Love and Miracles
You can also read on about faith and flourishing here, or head over to The Magdalene Thread for essays and conversations on heart-based spirituality and extraordinary faith.
