Chapter Two: The Space Between

Crossing the Threshold of Hope

“Light and darkness, life and death, and right and left are siblings of one another, and inseparable. For this reason the good are not good, the bad are not bad, life is not life, and death is not death.”

-The Gospel of Philip

Chapter One concludes with a short blog entry titled, “Out of surgery and resting”—marking a milestone in William’s journey of healing, while leaving a million words unspoken about the lifetime lived through his graft surgery.

Of course, I can only recognize this now—with enough time and space to illuminate April 12, 2013 as a turning point in the experience. Undeniable in both memory and these entries I re-read across the span of a decade, there is a shift in momentum, which transforms my experience in the burn unit and the story it inspired.

Indeed, hindsight reveals a miracle in the space between despair and hope, where there are words that have, up until now, remained in the shadow of my positivity. But since my inspirational narrative is fueled by wisdom that reaches from Dr. Brené Brown to Dr. Clarissa Pinkola Estés, I reckon that stories of wholeness are medicine.

Furthermore, if healing is predicated on becoming whole, then I must heed the call to gather all the bones and sing them to life with a voice of authenticity.

If this is a song about the depths from which I rose, then I must revisit the scene where I was sitting on a table with Eddie while William was in surgery. Perched together in high alert, we remained where it was physically closer to the operating room than the comfortable chairs in the designated waiting area. The procedure was pressing on longer than anticipated, and when a doctor on William’s team walked by us on a break from the delicate task of skin harvesting on a toddler, he was struck by the intensity of our anxiety. We appreciated his offering of assurances and the suggestion that we should eat while we had a break from William’s constant care, but remained in rapt attention at the precipice—praying for recovery to greet us on the other side.

In that moment, eating wasn’t fathomable—less, because of the nature of a surgery that was creating a larger wound on William’s small body for the sake of healing, and more, because of what was silently repeating in my digestive tract.

I felt anger swirling with grief, guilt, shame, and fear in the sea of negativity I’d repressed long before that moment. This is of course, a valiant attempt to cope with the unrealistic demands of modern motherhood, but one that did not withstand the test of adversity.

And, while the mothering experience had long since knocked the wind out of my perfection sails, this is when I realized that I could no longer run from, cover up, or ignore what I had artfully stuffed down to be a “good mom.”

I write to you now as the primary caregiver of a child who suffered an accidental injury, but on an ordinary day in motherhood there are a million ways to fail. A shift in perspective offers a million opportunities to gain resilience and grow, but not without the rock bottom moments of despair we might encounter in the abyss.

That which describes the bottomless chasm is a word anchoring the metamorphic point in a hero’s journey—a tool you might encounter when seeking to transform pain and fear into hope and healing.

Joseph Campbell is perhaps most famous for popularizing the monomyth, but walking into darkness on a quest for wholeness is the ancient sort of wisdom we might remember when our great expectations shatter into a million pieces around us. In recognizing the carnage of “what was,” we are offered a chance to resurrect in a new form—riding the coattails of a mythical phoenix who has long been rising in the ashes of our collective consciousness.

Pearls formed from grains of sand that grind into treasure under pressure are what we might gather in the depths. Likewise, struggle transmuted into hope will illuminate the cracks of our mended self as the source of newfound light. A philosophical approach to breakage and repair is elegantly expressed by the Japanese art, Kintsukuori, whereby broken pottery is fixed with gold, but the beauty of imperfection is born of a perspective we might gather across a multitude of cultures and traditions.

Yes, resurrection is ancient universal wisdom, but the bright shiny jewels, awe-inspiring art, and poetic prose we admire exemplifies what modern science can empirically validate as post-traumatic growth. However you choose to frame it, the miracle of transmuting lead into gold is negotiated by a growth-oriented mindset, which often requires practice and patience as we learn to overcome the instinctual nature of our survival wiring.

Perhaps then, it’s not the matter of hope we must call into question, but the space in which it floats from darkness to light. For, what resides in the liminal space between what we once were and who we are yet to become reveals the secret ingredient of a recipe for flourishing.

Releasing a white-knuckle grip from our great expectations might feel like the antithesis of grit, but surrender alchemizes the soul’s potential—a process metaphorically congruent with an adventure into the deepest, densest part of the forest. There, the grail awaits its seeker with treasures untold.

Undeniable is the overlooked truth that darkness belies the process of any positive transformation—a catalyst, which makes our holiness inextricable from the nature of human imperfection. With self-compassion and acceptance, every point of resistance we encounter then becomes an unexpected threshold of hope.

“Just as we must actively fight despair, we must learn to allow the experience of joy” are words born of the process by which I became a writer, but I was pushed into the story I now tell about dancing between the worlds of light and dark.

If motherhood was my call to adventure and maternal love the supernatural aid guiding me forth, the writing I did simply to cope is what brought me to the edge of the underworld—where I stared at a mountain of journals, wondering if I would ever have the courage to share my truth about the duality of my wholeness.

My words emerged in the world the night my toddler suffered a scald burn, but if William’s accident facilitated my descent, then his graft surgery is the bardo with all its connotations of death and rebirth that transformed me into a storyteller of hope.

It took many years and bad first drafts to hone the craft of my calling, but I delight in the expanse and playfulness I feel in the entries below that move with newfound freedom—narrating a story of resilience about a post-surgical time, which ultimately inspired my first published piece on the science of gratitude and three good things that swept me up in a wave of transcendence.

I wrote my story brave a light years ago, but my heroine is not without her shadow as an adversarial counterpart who plays a crucial role in kindling an upward spiral of hope. At least, this is the revelation from which I breathe new life into an old story.

In a desperate attempt to make sense of the unfathomable, it would be so easy to blame the babysitter entrusted with my children at the moment of the accident for what transpired. But if I am the mother who left her children in the care of another and walked out of her kitchen without looking up, I remain inseparable from the character who heard the pot crash down behind her. I then recognize the original villain, who was not only distracted by unnecessary anxiety in the first place, but did not want to face the carnage of an accident in the heart of her home.

Maternal instincts are powerful enough to override avoidance, and I turned around before diving straight into the scene, like a soldier blindly walking into battle. Since it was immediately apparent we did not have time to wait for an ambulance, Eddie whisked William off to the car, assuming I would follow. Instead, I lagged behind in search of the purse I did not need but was strangely desperate to find.

Why didn’t I run straight out of the house behind my injured son, not sparing a moment’s time?

I’ve long wished I could say I hesitated to comfort my daughter who witnessed trauma through her 4-year-old eyes, but I can only imagine that she was scared and in need of a hug. No, in my memory, I cannot locate my daughter, because I did not see her.

Rather, I allowed a tidal wave of overwhelm to crash into me. Swept up in anguish, I looked into the eyes of the women I was begged by everyone to blame and screamed, “Noooooo! I cannot handle this.”

My knees buckled and I collapsed toward the floor I never hit, because she caught me. I was lifted with arms of otherworldly strength and shaken by words that resonated with prophetic omniscience:

“You can and will handle this, because you must.”

At some point in the emergency room, as a team worked to stabilize William before transfer to the burn unit, I was floating outside my body. From this elevated perspective, I saw a woman who responded to every worst-case-scenario with a delusional sort of optimism beginning with, “No, he will not die.”

The next morning visitors flocked to the hospital with support, witnessing what my email expressed. I watched tenuous smiles turn to shock at the sight of my story playing out before them in real life.

Guilt and shame weigh heavy on mothers for all they do, and don’t do. There is no manual or perfect way—only camaraderie, which in this case manifests as a barrage of “I almost” confessions about stoves, hot water, and kids in the kitchen.

Authenticity made it safe enough to return to my body, and settle into this new reality. But I was badly shaken, and in need of security, so I cast a circle of protection around myself and the babysitter. Yes, she was technically responsible for the accident, but the wellbeing of my boys was at stake. Since both the high-risk pregnancy and William’s pain management were dependent on my composure, it was then too dangerous to consider the fallibility of a woman who I secretly understood was the source of my courage.

How tempted I was to feed the thirst of a social worker with a clipboard handy to formally document blame, but I insisted the babysitter meant no harm before standing in proud defiance against the inquisition. My maternal worth was called into question, but I valiantly argued against the insane suggestion that I serve cold food to prevent another injury from ever happening again. Then I slammed the door to an exchange that would long haunt me, before fully collapsing into the arms of a friend allowing my tears to splatter on the sterile floor of a hospital intent on revealing my vulnerability.

Needless to say, I was battle-weary by the time I was attempting to digest the reality of the graft surgery we prayed so hard to avoid. But William’s physical healing was dependent on a procedure that remains an unavoidable footnote in his medical history thereby marking the severity of his injury beyond the scars he does now carry.

I had no idea then what the journey of recovery would hold for either of us, but as a rooster crowing seems to pierce through the silence with profound impact, the sudden ringtone echoing in my memory heralded a wake-up call replete with layers of meaning.

No, I did not want to focus on the sounds of trauma. But yes, in my memory of the moment before the accident, I heart a phone ring, and it wasn’t mine, it was the babysitter’s.

Did she step away from my children at the stove to pick up her phone on the counter?

Were my kids who shouldn’t have been at the stove in the first place, unattended in the second it all came crashing down?

The ring is all I focused on for hours, with each minute that passed through William’s graft surgery pushing me further into a rumination about her negligence that was a reflection of my own:

What if it IS all her fault?

Eventually, I picked up my phone, firing off a series of questions to which I demanded answers.

Somewhere between denial and defense, I realized “who” or “how” didn’t matter, and that my crusade was not going to make the situation better or easier. Surrendering my weapons that only served to sever our entanglement of grace, I confessed,

“This is really bad, and I cannot carry it on my own anymore.”

I gave to her what I could not carry, but in truth, I was never alone. Only now can I appreciate the strength she shook into me the day of the accident. Her courage is what I so selfishly took and rebranded as mine, or in a less critical analysis, what I would borrow and eventually return—when I was ready to begin cultivating the faith I so desperately needed.

Yes, I’ve grown into the recognition of the higher power moving through us both, but before I would be given the eyes to see, my composure needed to erode. I allowed my anger fueled by sadness to roar like a fire breathing dragon through the chasm of my fractured soul. After the heat came a flood of tears, lifting me from the depths like a rising tide.

But my words unspoken froze into a layer of ice, encapsulating a memory of the promise I did not fulfill that day—to let her know when I received the news that William was going to be ok.

“Out of surgery and resting” is all I needed to text her, but was I distracted by the discussion about a blood transfusion and precautions necessary to prevent infection?Or, did I hold back these words with malice?

I’d like to insist upon the former, but optimism was palpable from the doctors to the nurses, and I silently skated across the divide of my frozen transgression.

Having consciously thawed that glacier with each word written here, my truth is no longer frozen like Elsa in the icy depths, but flowing with inspiration like Anna who sings about doing the next right thing.

But what, I must now ask, is the next “right” thing?

When each tenuous step into the great unknown is ours to choose, what will lead us in the direction of a heroic destiny?

If the stories we live to tell bring us full circle in a quest for wholeness, then by what standards are we shaping the characters who bring this truth to life?

Blame can only be wielded with a double edged sword of pain and shame—an act akin to casting stones, but if the lines remain blurred between victim and villain, then how might we then rank our hierarchical worth or measure success?

Then again, are we meant to?

The wisdom gathered to offer upon my return from adventure is something I’ve contemplated since moving through atonement. This happens to be the stage in the hero’s journey before one emerges from the underworld—having navigated the ordeal, and arrived at other end of the forest to reap the reward of new life.

For long, I assumed atonement had to do with reparation for wrong or injury. In religious context, atonement is the antidote to sin, but the grace of forgiveness is not what I received, but offered, to be free of the judgment that held me a prisoner of my own making.

Five years would pass between William’s graft surgery and the moment I reached back across the divide of separation with words that brought me into the unity of “at-one-ment”:

I am sorry. Please forgive me. Thank you. I love you.

I borrow from the ancient Hawaiian practice, Ho’oponopono to express my intention and the action from which I was released from the stranglehold judgment.

“I know he is alright,” she said, insisting my silence was never an obstruction to the peace I’d not yet known was possible, but found in all the light she so graciously reflected back to me—for we were always one.

Content Guide to Chapter Two: The Space Between

• April 13, 2013: My strong, resilient little boy

• April 14, 2013: Doctors vs Mothers and Nurses

• April 15, 2013: I can kiss both cheeks!

• How This Book Works

---

April 13, 2013: My strong, resilient little boy

If there is one thing I have learned about burns, it is that they evolve from the moment they happen and are difficult to predict. When we first were in the ER there was concern that some of the deep second degree burns on William's neck, chest and right arm would evolve to an even deeper burn, but the doctors were optimistic that the Oasis treatment they did the following day would allow some of these areas to shrink and possibly heal.

At the follow up visits, the doctors were pleased with the take of the Oasis...on his face, chin, most of his arms and lower chest the treatment was peeling away and revealing areas of brand new pink skin. While the doctors knew areas on his chest and right arm would need grafting they  were insistent this area was becoming smaller and smaller as we waited the two weeks from the initial burn.

On Thursday we checked in and did all of our pre-op stuff. This included a very difficult blood draw that the resident doctor came to do himself. While I had been insisting something was up with a putrid odor from William's wounds and extreme discomfort leading to sleepless nights for a week, it wasn't until he was in close proximity to William’s wounds that he realized the extent of the smell was more than just an overly scent sensitive pregnant woman's complaint.

While I was told there would be no dressing changes until William was sedated in the OR the night nurse came in with orders for one due to the strong odor. While these are always hard I didn't think much of it as I assumed we were just  removing the outer layer of gauze. As we started removing the dressing more and more layers of the treatment and gauze were falling off and I was soon staring at his chest, as open raw and exposed as it was the night of the burn. While I am no burn specialist, I have researched enough to have known at that point that his whole chest would need a graft. Though extremely painful, the wound clean allowed William the best night of sleep he has had since this whole ordeal began but I was up dreading the surgery as I knew it would be longer and more involved than we were led to believe as I had just seen a very large third degree burn.

They came for William at 6:30am and by 8:15am they sedated him in my arms and I placed him on the stretcher to be taken in for surgery prep and the general anesthesia. We were told the surgery would be two hours but mid way a nurse came out and said they were only 2/3 done. At this point they had harvested skin from one side of his butt to be stretched to cover his whole chest and they were next taking skin from the other side for his right bicep and forearm.

The surgery was four hours long in which they grafted 11 percent of his body. The Oasis only saved 5 percent from grafting. Due to the more extensive skin harvesting there was a concern  about blood loss and while there was discussion of a transfusion it didn't happen yesterday and I am hopeful that it won't be necessary.

Seeing him so raw and beat up in recovery after that horrible dressing change and four hours of stressful anticipation was my lowest point so far. However, by the time we were back up in our room, William was asking for Shrek and ordering me to snuggle. Within an hour he was drinking his "seltzer" and ate 4 chocolate munchkins. He then slept relatively peacefully through the night with little medication.

He was in a bit of discomfort this morning but after some Motrin was able to laugh at Shrek with me and at Dad's silly jokes and now is napping. They will do another blood draw today to see if he still needs the transfusion but he looks pretty good to me so I don't think it is necessary.

Because grafts are sensitive to infection and he has open wounds now on his butt we aren't taking any visitors in fear of infection. This could prevent the grafts from taking and mean another surgery and I think we have endured all we can take. I am not taking any chances until the doctors look at the grafts either Sunday or Monday.

Initially we were slated to go home on Monday but with the size of the graft anticipate Tuesday is the earliest we will discharge. Until then, we have Shrek and The Wiggles (though thank goodness he only wants this every now and then because the song "fruit salad yummy yummy" is just torture). We assume the "snuggle" position except for the negotiated bathroom break and there is a rotation of amazing nurses who know us very well and go out of their way to take care of William and Mom...they have really helped me through this ordeal. Most of all my little guy has a very strong and resilient spirit so I know he will pull through and heal. For a week at home he was bouncing around and riding his bicycle with a very painful open wound on his chest. While his poor little tush will be raw now too, his chest will finally heal. This hopefully is the road to recovery and I am certain he will want to be back on that bicycle as soon as he can.

As I first noted, burns are very unpredictable so the doctors are giving us no promises about recovery. But this Mom is pulling and praying that this is the beginning of the end and soon this will just be a time in our lives we look back on as our most difficult hurdle and one that made us all stronger and closer as a family.

---

April 14, 2013: Doctors vs Mothers and Nurses

The doctors here, God Bless them, are nothing short of amazing. They are skilled and knowledgeable and without a doubt, good at what they do. We have a team of three doctors working with us...and each of them have good bedside manner, attentive listening ears and are responsive to any questions we have whenever we have them. However....they do what they need to on the surgical end and then go about their next case while we are left to manage the aftermath with the care of the nurses. This is how it all works...I get that...but now I am going on three weeks of tolerating it.

Since William has grafts on his chest, left shoulder, right bicep and forearm, mobility in his upper body is restricted. He can use his left arm from the elbow down and is able to reach just enough to get a munchkin in his mouth or hold a drink. His right arm is in a cast to keep it in the L shape position and is wrapped all the way down to his fingers so while he can't bend this arm or move his hand, he can raise it up and down. There is a patch on his neck that was deep but not grafted so he doesn't have much side to side mobility. This is pretty much what he has been managing with for the past two and a half weeks...only now, hopefully the skin underneath the bandages is finally healing.

Couple this with a brand new wound on his poor little butt where they grafted. Skin was taken from his entire right cheek and most of the left....at a superficial thickness...but just enough so it feels like he was burned there too. The way this heals is by drying and scabbing so doctor's orders for yesterday was that the dressings on those were to come off and it was to air dry. Yes, this is very painful. Typically this means kids lay on their stomachs but given William's grafts this position isn't possible.

Dilemma, right? Our day nurse, Pat, got us through the removal of the dressing on one side and at the doctor's suggestion that we use a blower to help speed up the drying, she replied, "I think we should skin your butt and then put a blower on it." Still, desperate to get this guy on the mend, we were willing to give it a try so Eddie held a blower to Williams's butt for as long as he could tolerate it. A few hours later, we exposed the second cheek and while he refused the blower (wouldn't you) he rolled over toward me far enough onto his right shoulder that he was able to air most of it. After over 8 hours in this position his face and arms started to swell so much that his eyes were closing and by the time the night nurse Rhonda was on, I was holding William in my lap with his tush hanging between my legs. This lasted about an hour and helped his swelling so Rhonda told the doctor we needed another solution and so they put some drying silver stuff on and then a diaper and he was finally able to lay somewhat on his back and we got a decent night's sleep.

Thank goodness for peaceful rest because the doctor's orders for today were that he get out of bed to walk around and play. He was resistant at first but eventually we got him to the playroom and before we knew it, he was slowly walking around, giving high fives and allowing Mom enough time off snuggle duty for a shower. He even requested his Thomas boots which paired amazingly with his hospital gown and diaper and with Eddie in his 90s wardrobe that he discovered yesterday at his parents during a quick shower break, I haven't decided who made more of a fashion statement.

Throughout this ordeal I have realized that while doctor's orders always have the best of intentions they aren't always the best at the moment. Sometimes it takes a little compromise and sometimes Mom really does know best. The last time we were here I was insisting most of his pain was from a catheter (that was done incorrectly twice, then put in a third time) so when something still seemed off after its removal I insisted that he was tested for a UTI and while they only did it to keep me quiet...shocker....he had one and the minute an antibiotic was started his pain subsided. For a week I was complaining about the seeping wounds and terrible smell and then a major dressing change is done 8 hours before a surgery when the pain could have been spared for the inevitable anesthesia in the OR. Really? And now you want me to let this kid's butt dry out naturally? Do you happen to have any suggestions for this given his chest wounds and lack of mobility?

Needless to say I wouldn't have remained as patient and collected without the nurses backing me up and really looking at what is best for more than just Williams's wounds to heal....they advocate for his comfort and spirit. This compassion and holistic approach to medicine is what has helped me through the many helpless moments where there is nothing I can do to comfort my child in pain but "snuggle" and tell him it will get better soon.

With this morning's activity and the nice nap he is now taking flat on his back (thanks to Rhonda's silver drying solution) I am hoping that these painful moments really are going away soon for William. He is certainly tolerating this all much better than I would if I were him. Such is the spirit of a child....and the reason I will fight even harder for his needs as his mother….

---

April 15, 2013: I can kiss both cheeks!    

No...not his butt if that is what you were thinking. ;) I think we need at least two weeks for that to heal...but today they took the rest of the treatment off the left side of his face and I cannot tell you how happy I am to see his whole face! It's a little red and rough and will be this way for quite a while, but will heal and eventually show no sign of the burns. As I type this, William is watching Shrek and constantly touching his face saying, "awwwl better!" I am also allowed to "kiss the all better face."

The other good thing that happened today is when the dressings were removed, the doctors said the grafts look good and they are quite confident that they have taken. While they need to take another look tomorrow, they are anticipating we can go home on Wednesday. William still has a long road of recovery ahead but we are hopeful he finally has the hardest part behind him.

And for now, I am signing off because I am getting a request to go to the playroom...and then we are expecting Catherine and Daddy for dinner :)

---

How This Book Works

To read Blessings in a Burn Unit from the beginning, you might want to go back and read the front matter and first chapter, or chapters three, four, five and the afterward linked here:

• Prologue: On Resilience & Motherhood

• Introduction: Perspective and the Power of Narrative

• Chapter One: The Art of Paradox

• 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.