Chapter Five: The Artistry of Faith
Illuminating the Good Within Our Midst
I should advise you to put it all down as beautifully as you can—in some beautifully bound book … It will seem as if you were making the visions banal—but then you need to do that—then you are freed from the power of them … Then when these things are in some precious book you can go to the book & turn over the pages & for you it will be your church—your cathedral—the silent places of your spirit where you will find renewal. If anyone tells you that it is morbid or neurotic and you listen to them—then you will lose your soul—for in that book is your soul.
~Carl Gustav Jung
“Good Luck! You are a wonderful mom!!! Your kids are lucky!”
Eleven words emphasized by five exclamation points written on a sticker from the nurse’s station. I found it on the wheeling bed stand next to the bucket of ice chips and snacks on the morning of discharge from the burn unit.
I knew then that the words of my favorite night nurse were a treasure. But when I slipped this small note into the folder of information on burn recovery I was being sent home with, I had no idea how valuable Rhonda’s encouragement would become in the days, weeks, and months ahead as I set out to manage William’s injury on my own.
All day long I could (and did) count my blessings and write entries illuminating all the good within my midst in the aftermath of a miracle—the best-case-scenario outcome I’d solicited prayers for. But the optimism I found each day seemed to fade with the setting sun, and I would spend each night ruminating on the accident and all I “should’ve, could’ve” done to prevent it.
For hours, I would toss and turn with guilt and shame while trying not to wake William who was curled up against me as Henry nursed on and off. By morning, Catherine would join us in the bed, finding an open spot between my legs to snuggle into with her head on my healing womb. Postpartum has never been an easy experience to navigate, but I was feeling more vulnerable than ever before in our transition home.
“Keep snuggling him” said Rhonda, from the moment she greeted me upon transfer to the Burn Unit. Her advice carried me through many a hard moment where I felt so helpless against the intensity of William’s pain, and it’s what I reached for in the real world when overwhelm started spinning me into a spiral of negativity and doubt.
“You are a wonderful mom” she inked in writing, and I kept that note on my nightstand until I believed it to be true that showing up with love is what made me enough, even though I was a mother who had by all intents and purposes “failed” to keep her child safe from harm.
The darkness I moved through on the road to recovery is something I only began alluding to in the entries that follow, but what enveloped me through the period of silence that followed my last entry on June 2, 2013. “Just tell it like it is” leans into William’s need for the wholeness of the truth, instead of another vanilla ice cream cone that wouldn’t take his pain away. Only now can I see how this is the tip of the iceberg I would crash into before resurrecting as a writer on resilience and motherhood, but the depths are what awaited me on the journey of recovery.
Yes, there was a long period of time I didn’t write at all, because I feared my thoughts were too ugly even for paper. Then, when I did start writing again, I filled pages of journals before composing countless drafts of a story I might one day tell—if I could only write my way out of the darkness I was certain no one wanted to hear about.
There are times I’ve regretted this ebb in the flow of my creativity, but a bird’s-eye perspective on my journey of healing reveals how important this breath was, for the artistry of the faith I stand on today emerges from the duality of wholeness—where light is inseparable from its counterpart in darkness, just as any rush of inspiration will demand an equal amount of rest.
I’ve written that stories of wholeness are medicine, but the elixir of hope needs time for integration and will bring healing in divine right timing as we peel back the layers of meaning in our experiences.
At least, I’ve uncovered something new in the moments after I sent the email that changed my life, and heed a lesson about a "bar-less closet” and the optimism I wove into my blog in the burn unit. Simultaneously, it might be a point that will anchor this final chapter while bringing my reflective writing full circle to the beginning of this story—where vulnerability was my birthplace of growth.
What I remember is that leaning into the call to write and share the story I’d been holding about Henry’s ureters was the easy part. At least, it’s one thing “to do” something as in the case of expressing all the concerns I had about my pregnancy that collided with William’s accident. Yes, asking for support in a situation I couldn’t handle alone and hitting “send” happened so effortlessly. But as the email I wrote made its way through cyberspace to land in the inbox of the friends I wrote to, I found myself in a moment of stillness.
This is of course, all I was desperate to avoid, but exactly where I needed to remain—for, the “being” after the “doing” will only hold you in discomfort until it transforms you or the universe conspires to answer your prayer in divine right timing.
At least, this is wisdom gleaned in hindsight, when I can look back across a decade of healing and recognize that my written words read like an effective manifestation exercise.
The contractions scared me enough to write my truth, and releasing what I could no longer hold lifted me away from my first experience of panic since the accident had happened. But since Newton’s third law promises an equal and opposite reaction to every action, my upward spiral of hope dropped me back off in a reality I could not seem to escape. Unable to eat, run, shop, drink or do anything else to numb the pain of beholding William in a hospital bed before me in a morphine induced sleep, I reached for the black bag at my feet. At some point in the transfer from the Emergency Room to the Burn ICU, Eddie went home for William’s pacifier and blanket and grabbed the bag I’d packed for childbirth. Needing something “to do”—anything but sitting still in the discomfort of this reality, I began to unpack and organize my personal belongings. From a nursing bra to pajamas and newborn clothing, I was prepared for a hospital stay of a different kind, but was suddenly intent on settling into this experience I didn’t expect.
There was a closet behind me, so I stood up and opened it with the hope that fulfilling my urge to nest would bring some sort of relief—only I was stunned by what I found. Behind the door was a narrow space with no shelf, bar, or any way to organize my items and thoughts in the process. That’s when I started to silently implode, tumbling down a rabbit hole of negativity.
My rumination was interrupted by Rhonda, who came in on a round and was surprised to see me untangled from William for the first time since she’d greeted me at transfer.
“This closet, it has no bar” I complained, fixated on the aesthetics of the room as intensely as she was on William’s IV.
Yes, there in a room where my son was fighting for his life, I was upset about a “bar-less closet” that “made no sense” and wanted a solution to my “problem.”
Without an ounce of judgment or annoyance, Rhonda countered, “Oh well, we actually have some available space here tonight,” said Rhonda. “There is only one other patient in the ICU right now and if you want to move rooms, you can. Come, I’ll give you a tour of the 6th floor,” she beckoned with a smile.
I followed her beyond the doorway to William’s room, moving my legs for something other than a quick trip to the bathroom since the accident happened. We journeyed to the room next door that was slightly more spacious than the one we were occupying, and notably, it had no closet at all. Then she showed me a shared fridge where families label food to keep cold during their stay, the microwave I could heat up leftovers in, and the tiny playroom across the hall that William could check out when he was well enough. We then walked by the nursing station, and circled back around the corridor to where we began, completing the lap I would travel countless times with William who would eventually need to walk for both pain management and healing.
No, it didn’t matter what room we were in, or if there was a closet with or without a bar. Nothing had changed in the lap we made, but the quick walk shifted my perspective. By the time I re-entered the room, I knew the next right thing to do was to toss my half unpacked belongings into the bottom of the bar-less closet, and close the door. Then, I curled up in the hospital bed with William for the remainder of the night.
I woke to news of William’s first surgery the next morning, and signed the consent for debridement and some regenerative skin treatment I didn’t know anything about with a doctor I’d only just met. I was holding William in my arms when they sedated him, and the tears I long needed to cry finally fell when I felt his body go limp in my arms. When they took him into the OR, I was left with his blanket, pacifier and all the tumultuous feelings I could no longer contain. With reckless abandon, I rode that wave of despair until it washed me ashore—exhausted, but peaceful and ready for the post-surgical moments I knew would not be easy.
That’s when I picked up my phone to check my email and uncovered all the responses to the email I’d forgotten I sent in the middle of the night. By the time I was done reading these messages filled with the love and encouragement I needed, a friend was walking down the corridor of the hospital with a cup of hot tea. Over the days to come I would receive messages from more friends and even strangers, because my email was forwarded around to gather support. As the story goes, I started a blog on CaringBridge simply to keep everyone updated on William’s progress, and that’s how I became a writer in a burn unit.
Looking back across a decade of healing, I see how the words I wrote set the bar of optimism I both created and worked to hold onto in all the “bar-less closet” moments of the story I lived to tell.
I suppose then, the point I’ve written my way to has to do with perspective, the power of narrative, and the conscious effort we must make to write our stories brave and beautiful by filling in the gaps between our great expectations and the reality we encounter. For, if we can see the gift in a bar-less closet as an opportunity to build the resilience we need to grow through adversity, then we might recognize our role in creating the hope we seek, and ultimately, we might honor our part in building the faith we will one day stand on.
No, hope doesn’t just appear like a rainbow in the horizon, and we are not born with the faith we need to weather the storms of life.
Rather, we might work at gathering all the good within our midst in every moment, trusting it will be enough to hold us above the mire of despair—for time, impermanence, and a deep exhale never fail to transform reality, even if the miracle claimed is as small as a shift in perspective.
This is why I moved Rhonda’s note from my nightstand, where it had remained since discharge from the burn unit for over a year and taped it into an old journal when I finally decided to started writing again. The yellow-lined paper I returned to held stories from early motherhood when I started writing simply to cope as my heart cracked open with maternal love and all the questions about what would make me the “good mom” I longed to be all along.
“Your kids are lucky!” is what I needed to counterbalance all the judgments cast about my parental worth, and I held Rhonda’s perspective as the bar of positivity I needed to write my way to.
I suppose I figured if she had seen me at my worst and still illuminated something good within me, I could claim it as a sword of truth to wield against any passing judgment of an outsider who saw only my son’s scars and all they reflected about the failures woven into the fabric of my being.
I can say now that what I once saw as a roadmap of pain and sadness permanently etched on his body is now the mark of courage, but only because I choose to see it that way.
I also note that I wasn’t “strong enough” to endure any of the stories that live on in these pages, but writing carried me through the experiences that fostered my resilience, and the reflections I received about my talent for storytelling were gifts as unexpected as a bar-less closet.
“Scars are ugly” is what an expert once told me, and this is where my writing began—in the dark ages of burn recovery, but I don’t believe that scars are beautiful because someone told me this was truth or I believed what I could not then see.
Rather, I went searching for the beauty in the scars I carry in a word-by-word process, across thousands of bad first drafts of a memoir I began writing in early motherhood—back when I was searching for the voice I found in a burn unit that narrates the story I now share about hope, a bar-less closet, and all the good that was eternally within my midst.
For, even in the darkest moments there were blessings. I simply had to choose to notice they were there.
Content Guide to Chapter Five: The Artistry of Faith
April 28, 2013: Normal
May 2, 2013: The Boys…doing well!
May 20, 2013: Resilience and Henry, my “one month old today” miracle baby
June 2, 2013: Just tell it like it is
How This Book Works
April 28, 2013: Normal
That is what life finally seems. Sibling quarrels over whether to watch Shrek or Doc McStuffins, negotiations about how many veggies need to be consumed off the dinner plate, dishes, laundry, changing diapers, arguments over weather appropriate attire, Sunday eggs, bacon and church and even an hour of TV on the couch with Eddie while all three littles were asleep. This is the normal I was hoping for last weekend as we ventured off to dinner on Friday night but my water broke signaling the beginning of "our next hurdle" given what we were told was imminent with Henry's ureters. While there are still some balls up in the air about what exactly will happen with Henry as he has some more tests this coming Wednesday, we got a week to adjust and bring him home "healthy" and a weekend of "ordinary." After William's ordeal, the "birth/Henry" hurdle was a 2.5 on the Richter Scale and we are confident that whatever the future of Henry's situation holds it will be completely manageable.
Normal is what I think Eddie and I have been longing for since this all began and there were times when everything seemed so chaotic, we wondered if life would never be normal again. For so long it felt as though William's wounds would always be open and painful, that we would always be doing daily dressing changes and hearing him cry out, "I'm all done, I'm all done!" from the moment we would start. We went back to the hospital for a burn clinic on Friday and the doctor told us that the dressing changes are over. For two weeks, he is to wear normal clothes and take a bath as a normal 2 year old. The only challenges are his lotion massages on the burn sites 3-4 times a day and the sunscreen and hats he needs the moment he walks out of the house and eventually the special "shirt" he will be fitted for and wear 24/7 to hold the grafts in place. I'll take them...and I think he is quite relieved as well. Endless it seemed I would be living in a hospital but in the scheme of things, the 15 nights I spent drifting off to the noise of IV alarms and Shrek were not really that long given the situation. Now that I am home for good and in my bed it all seems a distant memory. On Monday I resume my normal routine of having two...well now three kids out of the house by 8am followed by groceries, dance class runs, doctor's appointments, "am I really out of toilet paper already," and "what am I going to put on the table for dinner?" dilemmas. I never thought I would actually crave this routine so badly.
It's funny...last Friday night, after we had rushed to the hospital "because third babies come fast" only to find out I was only 1 cm dilated and was sent out "walking," I found myself seated across from Eddie while we scarfed down stale turkey sandwiches. I was thinking, "wow, life actually seems normal - just me and Eddie together having a normal conversation over dinner on a Friday night." Somehow I wasn't focused on amniotic fluid or the contractions I was having or how delivery would go. William had let me leave without a blink and knowing he and Catherine were tucked in under a roof with both sets of grandparents, for the first time in weeks I wasn't worried about either of them. I was in labor and again in a hospital setting, but for a while the dust seemed to settle, my shoulders relaxed down my back and everything seemed calm in this stolen moment. Don't get me wrong, reality soon set in when my labor didn't progress and my fear of repeating the Cesarian I had with Catherine was brought to the surface at the insistence of Pitocin. I was so terrified that I managed 9 hours of my 19 hour labor riding the waves of artificial contractions without more than my IPod and a few back rubs until I was 8 cm dilated and could no longer bear it. "Restful" after this was the pain free 40 minutes where the epidural actually worked (after not working with Catherine or after two tries with William) and I drifted off before I was able to push Henry out in three tries. "Relieving" was the moment Henry was placed on my chest after having suffered two miscarriages and almost losing him before Progesterone kept him snug inside of me for 39 weeks and 3 days. "Miraculous" was when Henry peed all over me after I was told that his urinary tract wasn't working properly and he would need an immediate surgery.
I think that while I have grasped at reclaiming "normal" since William's accident occurred, now that we are settled back at home as a family, I am realizing that I haven't been normal since the first miscarriage that knocked the breath out of me last April 12th, 2012. I think it took William's four hour skin graft surgery taking place on the 12th day in April of 2013 for me to acknowledge this. The collision of these two events exactly a year apart brought me to the lowest I have ever been in my life. Since then, the fears, anxiety and guilt I have carried has slowly lifted as I navigate my life with both of my boys on the road to recovery and eventually perfectly healthy - because they both will be. Yes, finally, life feels normal...or maybe normal isn't the word. Perhaps given its abundance of blessings it can never be normal again and I will never be the same again. Now I see the love that surrounds me in so many ways and I think that my life now is extraordinary given its capacity for so much love and so many blessings.
May 2, 2013: The Boys…doing well!
Henry is the sleepiest baby I have had. That little guy will sleep through all the commotion in the house and while he should be nursing every 2-3 hours, prefers every 4-5 hours. This is great for Mom but not his weight gain so I try to wake him to eat. I strip him down, wipe him with a wet cloth (mean, I know) and still he is content to sleep away in my arms until he decides it is time to eat. This of course has been the case with the only exception being yesterday when I had a photographer at the house to get some of those really sweet mushy sleepy newborn shots. He refused to fall asleep!!!!! While we eventually got a few snaps, he proved to be the photographer's most difficult client and as soon as she left was sound asleep again.
We did get good news from the pediatric urologist - that his kidneys look "beautiful" which means whatever fluid was in his kidneys in utero did no damage and isn't there now. This is a relief because kidney damage was the big fear and the urgency of the surgery he was supposed to have following birth. His ureters, however, did show up as enlarged yesterday and we are going do do another test to take a closer look at things in the next week or so. I think the worst case scenario with this is a surgery around 6 months to a year or he could possibly outgrow it. Given the way things have played out thus far we are hopeful the latter could happen so keep your prayers coming!!!
William is doing better with each passing day. Just this week he started getting into the bath without crying and for the past two days has let me wash his hair and will even dump a cup of water over his head which is a huge step. While I am sometimes hesitant to push him too fast to resume his normal routine, it seems that when I nudge him he will think about it then dive right in! He is such a brave little guy and quite verbose lately. I think his dependency on me to do things for him allowed his communication to develop fast. Now he orders me around in detail all day long. The next thing I need to push on is getting him back into his bed...maybe in the next few weeks. If it wasn't for him in my bed I would be the most well rested mother of a newborn! I think the two of them have figured out how to give me only as much as I can handle. I am sure when I actually do get William sleeping through the night in his own bed, Henry will be up every 90 minutes!
May 20, 2013: Resilience and Henry, my “one month old today” miracle baby
The moment William's accident happened, I was already tired and stressed out. Thirty six weeks pregnant and headed out the door with Henry's sonogram in hand that noted the enormous size of his ureters and the beginnings of kidney damage, I was distracted but pulled back to reality as I heard the babysitter scream. With the rising sensation of fear and panic in my chest, I ran back into the kitchen, and saw the babysitter running to the sink with William in her outstretched hands. I grabbed William from her and when I saw the heat and steam rising up off of his clothes, I attempted to rip his shirt off not realizing that his bicycle helmet was still on. I had to fight the adrenaline rush and slow down in order to unbuckle the strap and remove the helmet, then peel off his shirt. In this eternally slow and clumsy moment, the severity of the situation became apparent as the skin had almost completely melted off half of his face, neck, chest and arms. As I tried to grapple with what this meant, I couldn't help but feel as though I was helplessly sinking into a dark hole. Maybe I wanted to sink into that hole and disappear because I knew what I had to do, but didn't want to. I really just wanted to run away from it all.
Not wanting to shift from this moment because I knew the next would be even harder, I looked up, saw Eddie standing nearby and was relieved to be able to give him William. As I handed him off, Eddie and I made eye contact and had an unspoken dialogue that said, "knowing how long it took the ambulance to get here when he had his stitches four weeks ago, we need to just get in the car and get to the hospital," and with that Eddie headed for the car. I turned around with the intention of finding my purse and when I faced the babysitter, I paused but the room continued to spin around me, and suddenly the fear and panic escaped my body as I screamed, "Nooooo! I can't handle this!" and collapsed. The babysitter caught me, picked me up and held me by the shoulders while she shook me and said, "Alicia, listen to me - you need to be strong. You need to get William through this and you can't let yourself go into labor now." With that, something in my perspective shifted and I found my way to a stronger place. I regained my footing, calmly walked out the door and climbed into the car next to William so I could hold the carseat straps away from his raw, oozing skin as Eddie dodged rush hour traffic to the hospital. While I was more scared and helpless than ever before in my life, I stayed focused on what I needed to do and that was to comfort my terrified son. I pressed my cheek to the unburned side of his face as he screamed so I could whisper in his ear over and over again, "Mommy loves you so much, I know the ouchies hurt but you are going to be all better soon. You are going to be alright."
I was so collected and focused that when I rushed through the emergency room doors, and said, "my son is burned please help me," a few doctors and nurses looked at me and then carried on with what they were doing. I repeated, "someone please, I need help...my son." No response, they all were in deep conversation and the pregnant woman running with a shirtless, crying two year old in her arms could wait. Before long I was at arms length from the check in desk, and pissed off that no one was paying attention to me so I screamed, "I need help now...my son has been burned and I am very pregnant and having contractions and at risk of going into labor at any moment!" Instantaneously, I was swarmed by a group of people and whisked off to a room where I sat on a stretcher with William on my lap and before I blinked they had layered gauze on his burns, put an IV in his foot, hooked up blood pressure, heart monitors, inserted the foley catheter, started morphine and roughly explained to me that the size and location of the burns were cause for grave concern.
Throughout the remainder of the ER experience, the transfer to the burn unit, that first fear filled sleepless night with William followed by a two hour surgery the next day, then six days in the hospital, a week home anticipating the inevitable second surgery and recovery from skin grafts, six more days in the hospital, then adjusting home with a wounded kid who needed daily dressing changes and constant affection, an attention deprived Catherine who was trying to digest Mommy being in a hospital again to have the baby, breaks from it all only to go to my OB to monitor the baby that needed a surgery by three days old and may or may not need to be induced at any time if my fluid dropped, three nights of non-hospital rest followed by my water breaking and a 19 hour labor......
....I was strong. I was resilient. I handled what I needed to. We got through it and each day now, our situation is better...more manageable...and ad nauseum we repeat, "we were so lucky...it could have been so much worse.....thank goodness his face will be ok, twenty years ago he could have died, we are so lucky Henry held out until William's hospital stay was through, we are so lucky Henry didn't need a surgery right away..."
But now as life is continually better and I recognize more blessings in my life each and every day I find that I am struggling harder than ever to stay strong and resilient. Why now? The way I look at it is that resilience is something you need to work hard to maintain. I liken resilience to a muscle: the more you work your muscles, the stronger they become. The more you work at resilience, the stronger it becomes, and as with a muscle, the more consistent you are at this, the easier it is to maintain your strength and tone. These days my resilience should be as bulky as body builder's muscles but still, I cannot help but feel as though my "resilience muscle" is completely overworked and fatigued. As when your bicep muscle is maxed out and burning and quivering and you are fighting your for say, "just one more bicep curl..." I am willing my resilience to "help me keep it together" and "stay positive" but some days, just as some workouts, are easier than others.
I suppose what gets me through these moments of exhaustion and sadness is simply allowing myself to have them. Holding it all in is certainly not healthy and I am discovering that the most useful tidbit of information I took away from my studies of positive psychology involves something called the Losada ratio and Barbara Frederickson's broaden-and-build theory of positive emotions. Broaden-and-build suggests the necessary role of both positive and negative emotions in our lives. We experience these emotions every day and while a negative emotion such as anxiety leads to a survival response (fight or flight), a positive emotion, such as hope, can allow us to see the light at the end of the tunnel and play a long term role in psychological resilience and flourishing. If we are "supposed" to have both positive and negative emotions and the Losada ratio suggests that a healthy balance of these emotions is 3.1 positive to negative then I constantly remind myself that the negative emotions I process are normal, expected and as long as I keep them "in balance" I will be ok...I am moving forward and yes, I am healing so ultimately, I am adding fuel to my resilience tank. At least this is what I tell myself these days...
These days, William's journey continues to take turns that surprise us. Two weeks ago when we took him to the burn clinic, we were told that soon after we get his "special shirt" fitted that holds his grafts in place (it should be here next week) we should start considering procedures to help with the scarring of his grafts. These procedures, among them microdermabrasion, laser treatments and Z-plasty are done in the operating room. Hence, William needs to be put under and relive the trauma of being in a hospital and healing from open wounds four or five times, maybe more depending on the severity of the scar tissue. Overwhelmed by this, we went to the city for a second opinion and those doctors suggest we do nothing and accept that he will be badly scarred and his movement might be restricted from the tightening of the scar tissue. We are still researching and gathering opinions, but I think our decision will fall somewhere between allowing time to see how his body heals on its own and being proactive to give him every advantage to heal - even if that means some invasive interventions in the next year because the scar tissue is already beginning to restrict mobility in his neck.
While he detests his "lotion massages" that I do twice daily and itches violently at night to the point where I need to hold his arms while he is sleeping and console him back to sleep when he yells out from the discomfort, William is as goofy, rambunctious and outgoing as he ever was. Diaper changes are tough because he gets raw spots on his still healing behind, but he cries, deals with it and moves on to either ride his bike, hunt down a fun new toy from Catherine's room or "see baby Hengwy." I think his personality and attitude are what help pull me through those moments when I want to feel so sad and angry about what he has and continues to go through. I used to love bath time in my house where I had two "naked monkeys" running around....but now it is the hardest time of the day for me because I need to flex my "resilience muscle" really hard to fight back the tears I want to cry when I see William's beat up little body. I realize this will all look better with each passing day but he will never be perfect...as he was when I brought him into the world. I think Henry in his sweet infant perfection is a reminder of this. We bring our babies into the world and then life happens....and lately I am working on accepting that there is nothing I can do to erase everything that happened.
Henry had a sonogram at two weeks old where it showed his ureters were perfectly normal but given the size they had been while in utero and a thickened bladder wall (which suggests damage) I was told to take him for what is called a VCUG. This test is an X-ray taken after dye is inserted into the urinary tract via a catheter (how I love these...) to essentially see where the urine is going and allows a closer look at the potential areas of dilation. The doctor performing the test didn't give him a UTI (phew), and was able to tell me that indeed the ureters were now perfectly normal and there was no kidney damage or reflux, but still he still had a dilated urethra and thickened bladder wall. But "with a really good urine stream, this is a very confusing and contradictory finding." I left the test assuming that this would mean constant follow up until they figured out what the cause was and had a week of anticipation before the follow up with the pediatric urologist, Dr. Hanna. At our appointment this past Wednesday, Dr. Hanna entered the room and said, "Ok, let's see what this little troublemaker has been up to." He studied the X-ray for a moment and muttered, "he most definitely had a valve and at some point between your last pregnancy sonogram and the one he had after birth, he corrected it." While he stepped back, folded his hands across his chest and continued to stare at the findings, I suggested, "so Henry's technically not a troublemaker." To this, he replied, "no, I still consider him a trouble maker...just a brilliant one." Eddie and I looked at each other, back at him and asked, "how often does this happen?" to which he replied, "I have been doing this for over thirty years and while I have heard of this happening I have never seen it happen myself." "So you mean we have the miracle we have been praying for?" Eddie suggested and as Dr. Hanna was snapping photos of the X-rays to report his "rare finding," he said, "yes, I suppose you could consider this somewhat miraculous.”
While we still need to do a procedure in the OR when Henry is six months old to make sure the rest of the dilation dissipates and there is no residual valve left behind to give him "a clean bill of health," we are optimistic that this will be the final chapter of his PUV. Henry's situation was indeed as severe and worrisome as the sonograms I had during pregnancy indicated. Looking back that must have been why I was checking in weekly with Dr. Hanna via his cell phone on the progress of my sonograms. Now, despite all that worry, and I suspect because of all the prayers from so many loving and supportive friends, family and even strangers...I have a thriving baby boy who is exactly one month old today!
So, I think I will end this very long post with the amazing news we received: Henry is a "brilliant troublemaker" who I am now certain is "perfectly healthy" and after his procedure at six months I will not need to spend another moment worrying about his urinary tract or kidneys or handing him over for another test. His situation will be but a small bump in the road. Yes, William's road to recovery continues, but I have been prepared since December to be focused on the health issues of my son at this given moment in time. William might not have been the son I anticipated to be in and out of the hospital and sleeping in my bed but life is full of surprises. It is certainly filled with miracles...big and small....and as long as the good outweighs the bad in any situation in my life, I'll muster up the strength to keep working at my resilience to keep on keeping on....
PS - I am perfectly capable of properly citing the positive psychology terms I referenced above but I am out of time as William is eager to go outside on his bike now that there is a break from the rain. If anyone wants more information about resilience, the Losada ratio or broaden-and-build please let me know!
June 2, 2013: Just tell it like it is
"Go ahead, try it on - this is your special shirt. It's silver like a knight's armor - you can slay the dragon in Shrek wearing this." William said nothing, peered at me under his eyelashes with a pout on his mouth and put his head down on my lap. "Why are you hiding? I think this is a pretty cool shirt...and it is going to help your ouchies get better really fast." Again, he said nothing but sighed and turned his head, still pressed in my lap, to the other side. "Ok, I think that lollipop you got from the front desk is pretty tasty. I bet you would like another one, right?" My bribe worked like a charm as he finally responded, "Can I have a purple one...and a blue one?" to which I replied, "Yes, if you put your new special shirt on, I promise you can have two more lollipops when we are done."
With the prize of lollipops in sight, he allowed the technician to pull the very thick, custom designed and manufactured in Germany turtle-neck, long sleeve and skin tight shirt on his body to cover and support his burns with the hopes of minimizing scar tissue. This "compression garment" will be his fashion accessory 24/7 (with the only exceptions being bath time and swimming) for the next year. Upon first sight of this shirt, my heart sank as I thought of the recent heat waves and the sweltering weather they might be indicative of for the coming summer. The heat paired with this suffocating shirt on William's little body that is already lacking sweat glands where he was grafted (11 percent of his body) is a recipe for overheating and discomfort. The time and fights it will take to get this garment off and then on again in the mornings for his lotion massage, then at the pool if he swims, at bath time, etc. was the next fleeting thought. Then as I looked at William's quiet, sad face peering back at me as if to say, "Mom I know you are trying with your silver knight nonsense but this shirt is terrible, and I am not happy about having to wear it, but I will because you are insistent."
Four Dum-Dums lollipops later (this is the rare instance where I can be grateful for artificial flavor, coloring and high fructose corn syrup) we headed to the car. William was silent except for his unusual request to be carried as he always insists on doing everything on his own. When I strapped him in the car seat, he turned away when I tried to kiss his cheek so I just got on with our journey home. In the rearview mirror, I couldn't miss his slumped shoulders and downturned hat that I knew was concealing a still pouty face. "Ice cream. How about some ice cream - would that make you feel better?" I suggested thinking a little more sugar could fix this situation. This time, he didn't bite the sugar bait so I let him be. As we approached town, I asked, "Are you sad because you don't like your new shirt?" He picked his head up, glanced at me through the mirror, and put his head back down. "Ok, I know you don't like the shirt and that is alright. I understand. I don't like it either. I am sorry you have to wear it. I am sorry this all happened but the doctor's say this is going to make the ouchies heal better," and I continued this banter, more to convince myself of why I was torturing my son any further than to remedy a two year old's pout. In the ensuing silence, I drifted off in my mind to my pity party about how this all really sucks and I wish it was all over for him already but my rumination was interrupted with, "I want banilla ice cweam" and so we stopped for the vanilla ice cream we both knew wouldn't make the shirt situation any better.
William's personality has been back with a vengeance the past month. Nothing has set him back - not his constantly itching "ouchies," lack of sleep or his follow up visit to the burn clinic - he sailed through it all with a pep in his step and high fives for everyone along the way. I was so struck with fear that this was going to be a big retreat he wouldn't easily pull out of. While William's silent treatment came to an end with vanilla ice cream and my honest acknowledgement of the situation, his mood didn't fully shift until Daddy's suggestion of going to "play golf." In the past month, motivated by the need to keep up his activity to prevent the scarring from restricting his mobility, Eddie has been taking William to "go hit gwalf bawls" - an activity he loves. And so to this Mom's relief, it was Daddy who swooped in and saved the day. While the boys were out doing their thing on the driving range, Catherine and I did some gardening and nursed our babies (she has taken to modeling my mothering skills with her baby doll she named "Catherine"). By the time dinner was on the table, William came bounding into the house excited from golf and in much better spirits. How relieved I was to face a two year old's pout about how many bites of broccoli needed to be finished before leaving the table and later about not being allowed to jump in my bed.
Yet again, William's resilient spirit has amazed me. He put his shirt on without a fight after his bath tonight. He seems to have a quiet understanding about everything that is going on and while I might have irritated him with my "this is a superhero shirt/slay the dragon nonsense" I know we are all good because I was asked to snuggle him to sleep. At William's bed time, Henry is usually fussy and wants to be held so it is always the three of us snuggling until William drifts off to sleep. Tonight, Henry was more fussy than usual so William asked, "Can I touch Hengwy?" and with my approval he gently rubbed Henry's head until he settled and then drifted off to sleep himself.
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 four chapters before reading forward to the afterward, linked here:
Prologue: On Resilience & Motherhood
Introduction: Perspective and the Power of Narrative
Chapter One: The Art of Paradox
Chapter Two: The Space Between
Chapter Three: The Science of Happiness
Chapter Four: The Birthplace of a Miracle
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.
