
Have you ever met someone that gives you the sense that all of life has led you to this moment?
Kim and I introduced ourselves over drinks during a party at the home of mutual friends. I was immediately struck by her calm, curious demeanor, and pleased to see she was drinking Fiji water, like me. Not that bonding over pretentiously branded, overpriced bottled water is something to write home about, but I mused over the fact that we both brought our own. At first meeting, she is easily one of the most gentle, bright, cheerful and fully present women I’ve ever met, to say nothing of her beautiful face, posture and muscle tone. Her shredded physical form is impressive and awe-inspiring, but little did I know just how strong this woman really is.
Our hosts, Tracy and Scott, were in the final hours of getting ready to leave their home and move with their children to Amsterdam. Several families in town turned up with pizza, chips and beer to gather on the front porch of their mostly empty, packed-up home and bid them a final farewell. Some families already knew one another. Others were meeting for the first time, all in the spirit of friendship and support.
After introductions, Kim and I small talked, sharing some lighthearted stories about work, music, where we grew up, where we’ve lived and traveled, types of foods and drinks we do or don’t enjoy, and various other topics. She loves weightlifting. I love writing. I told her I do some ghost writing for a few clients, one of whom rescues horses which makes me feel good and purposeful. My husband, Neal, told a funny story, about his buddy, Andy, who used to crash his family’s Sunday dinner like clockwork. All the while, Kim graciously humored us, smiling and laughing in genuine amusement. I noticed she adapted deftly and effortlessly to a few drastic and dramatic shifts in subject matter, telling us about her Dad being rescued from a Panamanian prison in the eighties. Our chats ebbed and flowed as I talked about my Dad rescuing people from an explosion that claimed his own life in the nineties. Not your typical party conversation. And I loved it.
Kim talked about how she lifts weights for mental and emotional strength. I concurred, saying I write for the same reason. She said she’s more of an introvert at parties, preferring more in-depth one-on-one conversations off in a corner somewhere. I told her I had always been outgoing, and yet I find as I grow older – and having suffered hearing loss in recent years – I rather prefer smaller, quieter gatherings. Neal and I joked about how deaf I am these days, and I looked around and noticed that we were indeed in a corner, Kim standing to my left. By my bad ear.
As we pleasantly volleyed between water and whiskey, Tracy and Scott’s two young children, Owen and Grace, walked outside and presented Kim with two envelopes. I made an effort to read their lips as they spoke but could only partially make out that they had done some sort of fundraising and wanted to make a donation. I studied Scott’s and Tracy’s faces and noted the tenderness in their eyes. Kim was visibly moved and bent down to gather Owen and Grace into her arms. She then excused herself into the house. I had the immediate sense that she must have experienced a profound loss, so I turned and politely asked Scott if she was okay.
“Oh man,” he said. “Kim’s son, Sean, died five years ago. He and Grace went to kindergarten together. They were friends.You know the 5k race they have here in town every year?”
Goodness gracious. I knew the race he was talking about. I had seen the signs in town. I saw the mile markers spray-painted on the road. I even remarked to Neal one day while we were out walking the dog that I’d like to run that race sometime, and I didn’t even know who it was for or what it was about.
“Oh my God, was he sick?” I asked.
“Yes, well, I should say he got sick. It was like he was fine one minute and then he came down with this high fever and was in the hospital for five months. They diagnosed him with this rare condition called HLH and it all just took a turn for the worse and he went septic…”
As I stood there listening to Scott tell Sean’s story, I blinked in what felt like slow motion, reeling on the porch thinking back to a few short months ago when I stood by my own septic daughter’s hospital bed and watched, horrified, as her vitality took a spontaneous and heinous spiral downward. I watched her life force diminish before my very eyes.
Kim came back outside and I told her how very sorry I was about Sean. Our eyes fell heavily on each other and there was an excruciation in them that we shared, so much bigger than sadness. I told her we had very nearly lost our daughter just a couple months ago to Sepsis. Her whole facial expression intensified as she slowly repeated the word Sepsis back to me, as if it were an evil, insidious phantom. Because it is.
Three weeks into first grade, Sean had come home early from school with a fever. Over the next few days and after several doctor and emergency room visits, his fever was uncontrollably high. He was intubated and transported by helicopter to CHOP in septic shock and multi-organ system failure.
I couldn’t believe it… and yet I could. One minute we were standing there on the porch, discussing things like the way horses greet one another with a certain kind of intuitive knowing and how Take-a-Boost is a flat, unsatisfying and undrinkable colloquial beverage. Next thing I knew there we were, commiserating over the ghastly ways that systemic infections had crept up and took over our children’s bodies. Sepsis takes no prisoners. It runs the show. There, Kim and I stood in the corner, speaking to the unspeakable horrors that can happen in an instant and lead you to your child’s deathbed.
My own daughter, Michaelina, had come home from school like any other day. We played with the dog, took goofy selfies that made us both belly laugh, then I asked her to straighten up her bedroom and put her clothes away while I went downstairs to make dinner. As it was cooking, I picked up a few things around the house and carried them upstairs to put them away and noticed Lina’s room was still not straightened up. Feeling impatient, I hollered at her to get off her phone and do as I had asked, only she wasn’t on her phone. She was sitting on the floor by her dresser, piles of clothes all around her. She slowly stood up, pitched forward toward her mirror and said she felt dizzy. She looked up at me and her face was pale and drawn.
“Honey, are you okay?” I asked.
“I don’t feel well,” she answered, her eyes swollen and puffy.
The next 24 hours brought high fever, vomiting, and lightheadedness. She slept and slept and slept… and figuring she was “sleeping it off,” I let her. Every hour or two, I would bring her water, ginger ale and a popsicle, but she didn’t want any of it. I pushed them anyway. She could only take small sips and licks and then would drift off again. At one point I asked her when was the last time she used the bathroom and she replied with strings of garbled nonsense words that weren’t even remotely coherent. I managed to get her up and walk her into the bathroom, noticing she was so weak, she leaned into me. I held her on the toilet so she wouldn’t fall over, then helped her wash up and get back into bed. Suddenly, and with surprising clarity, she asked, “Mom, what if I have toxic shock?”
Perplexed by the question, I took a moment to process what she had said. Toxic shock?
“Honey, why do you say that?”
She replied blatantly, “Because I feel like I’m dying.”
I sat beside her, gazing at her face as she drifted back off to sleep, wondering how in the world she was able to remember what toxic shock… i.e. Sepsis… even is. Sure, I had mentioned it to her before, the importance of being responsible with feminine product use, but for her to hone in that potential diagnosis with such crystal clear curiosity… it surely gave me pause.
She was wearing a sports bra and gym shorts. Her skin was on fire and had a reddish pink hue to it, like she had been out in the sun all day. I stirred her gently to take her temperature: 103.5. I walked into the bathroom and took the product information insert out of the tampon box. Grabbing my reading glasses, I read:
Tampons are associated with Toxic Shock Syndrome (TSS). TSS is a rare but serious disease that may cause death.
WARNING SIGNS OF TSS ARE, FOR EXAMPLE, SUDDEN FEVER (USUALLY 102° F OR MORE), VOMITING, DIARRHEA, FAINTING OR NEAR FAINTING WHEN STANDING UP, DIZZINESS, OR A RASH THAT LOOKS LIKE A SUNBURN.
I called the pediatrician immediately and told them we were concerned about toxic shock. The nurse practitioner said it was possible, but unlikely, and sounded an awful lot like Scarlet Fever, which Lina had had when she was five, but she advised us to go to the Emergency Room anyway just to be safe and sure. I took her instead to the local urgent care facility, where I figured we would get the simple and quick strep test done, confirm the Scarlet Fever diagnosis, get the antibiotic script and be on our predictable way.
Walking in, a nurse came out to help me, noticing how weak Michaelina looked. They did the normal routine, checked us in, got her weight, took her temperature, but it wasn’t until her heart rate and blood pressure vitals set off critical alarms in triage that virtually the entire staff stopped everything they were doing and rushed to her side. They double and triple checked the machines. They took manual readings with the second hand of their watches.
Next thing I knew, they were trying desperately to find a vein to start her on a bolus of IV fluids. The first attempt failed. The doctor herself stepped in front of a team of two nurses, took out a fresh catheter needle and searched for the vein a little higher up while asking me what hospital I wanted. All the while, my daughter’s blood leaked out all over her arm, the doctor’s bare hands, and onto the floor. She asked me again, as she taped the catheter down, what hospital was affiliated with my insurance and, stunned, I said I wasn’t sure. I fumbled around for my wallet, searching for my insurance card, but I couldn’t read the toll free number on the back of the card because I had left my reading glasses at home. Plus it was a Saturday and the insurance company was closed. Everything was happening so fast.
The paramedics arrived within moments and we were on our way by ambulance to a CHOP affiliate on the Jersey side of the bridge. There, Michaelina’s case confounded doctors and nurses. At first they thought it was the flu. Then they thought likely a virus. Perhaps it was TSS, but probably not. They got on the phone with the infectious disease team at CHOP Main. Maybe it was a tick-borne illness or possibly something else. They simply didn’t know. More blood drawn. More tests. More fluids. All the while, her heart rate and blood pressure simply wouldn’t stabilize.
Early on, the doctor on the floor told us she would be staying overnight. He felt confident that things would improve with fluids and conservatively assured us that we’d likely go home in the morning. The fluids continued, the fever came back, the weakness and dizziness waxed and waned, the rash circled back around. As the shifts changed, the doctor came back into the room. His face was grave. He wasn’t so sure now that we’d be going home in the morning. He changed his tune and said we should pack some bags. Neal said he’d go home and do that for me while I stayed with Lina. I told him he may as well stay home and get a couple hours of sleep. We were in for a long night and it didn’t make sense for us both to be exhausted. He painfully agreed and offered to go home and take care of the cats and dog and make childcare arrangements for our son. While he was at it, he put a group text out to the family and some friends and let people know what was happening and ask for their prayers. Shortly thereafter, Michaelina was being rolled out on a gurney and onto the critical care transport unit to Philadelphia.
She and I arrived a little after midnight to CHOP Main, where she was met by a throng of doctors and nurses. There must have been a dozen people buzzing around my daughter’s bedside. After hours of watching, waiting, administering, and testing, no one could say for sure what we were dealing with. At 3:30 am, one of the attending physicians pulled me out into the hallway alone and told me that my daughter was a very, very sick girl.
He told me they were going to breathe for her. He asked if I wanted to be in the room when he inserted the breathing tube into her trachea. He guessed that it could come out if and when her heart rate and blood pressure stabilized, but that wasn’t the direction she was currently heading. They would have to insert an aortic catheter in her neck so that they could immediately take life-saving measures. I knew what this conversation meant. I knew right then and there that what they were saying is that she would either live… or she wouldn’t. My knees buckled and I unraveled in the hallway.
Standing on the porch now at Scott and Tracy’s, the wretched memory and the crystal clear clarity of it all came flooding to the forefront of my mind. I tried to find the strength in my knees once again, visualizing Kim standing beside her son in the same pediatric intensive care unit I stood in, gazing at her indescribable picture of perfection and sublime source of life’s very joy and light. I played it out in my mind, watching her lay beside him at night, just as I had done, her eyes pinned to his vital monitors like a television, the tracheal procedure, the breathing machine, the arterial line, the adrenaline drip, watching the heart rate and fever spike as blood pressure plummeted drastically in the other direction.
I am sitting with Kim now, sitting beside him, knowing first-hand how surreal and senseless the whole thing was… and is… to witness your precious, fragile, vulnerable thing of beauty helplessly succumb to the body turning maliciously and inconceivably on itself.
I twice watched my daughter’s heart rate skyrocket to the point of setting off loud, flashing cardiac arrest alarms across the hospital, while watching her blood pressure descend far below critical levels, I knew death was just beyond the threshold of her room. The desperation in a mother’s eyes, the sheer helplessness, the pleading for a solitary miracle, the exasperated urgency for someone, anyone, to please help my baby, the ferocious impulse to fly across the hospital bed and take matters into your own hands while remembering to defer to the professionals who – God willing – are doing everything they can, and more, to keep your child alive.
CHOP is easily the most advanced and amazing hospital in the world, and yet the insomnia and incomprehensible exhaustion is utterly all-consuming and makes you question everything. Attending morning rounds, allowing your observations and feedback to inform the course of treatment, the respect and awe for the physicians and nurses while simultaneously wondering if anyone really knows just what the hell they are doing. Placing all your hope and trust and terrified faith in modern medicine. Anything. Anything to save the light of your life… the love of your life.
Kim’s sweet boy, Sean, was at CHOP for five months. He sustained several heart attacks and was placed on a heart and lung machine, life support and dialysis. A rare and aggressive autoimmune disorder called Hemophagocytic Lymphohistiocytosis (HLH) was the official diagnosis. His tiny little body was completely ravaged by the disease. He was swollen and blistered beyond recognition and his limbs turned black from lack of sufficient blood profusion.
Sean had bilateral below the knee amputations and nine fingers amputated. He received chemotherapy and high doses of steroids. After one hundred days of fighting, Sean’s tiny, frail and damaged body could no longer keep up with his big, beautiful spirit. He went into Sepsis as a result of HLH and died from a severe fungal superinfection as a result of the chemotherapy, which had left his immune system wide open and compromised. Sean’s aorta ruptured on January 6, 2013 and he passed on from this realm
Kim’s broken, splintered spirit cracked opened on that porch as she told me about running to Sean’s side when she learned he was having trouble breathing. The heartache. The numbness. The out of body cries of despair. The longing to cherish forever your sweet child’s face. To have and to hold. To cradle and kiss. And to be faced with such profound tragedy and trauma.
Kim called it a spiritual crisis. She confessed that once she lost Sean, she no longer cared if and when she died herself. It sounds bleak, but it isn’t. I nodded in understanding and admitted that when my father was killed, I never felt more unafraid. I was invincible, ready to run into the fire to find him. To save him. To bring him home. Super human strength often comes when you are pushed beyond your comprehension. Not that I would ever conceive of doing the unspeakable, but it’s fascinating how un-scary the prospect of death becomes when the immense, infinite and immeasurable love you have for someone is so abruptly ripped from your grasp.
To want your father back is one thing. To want your child back, well… there aren’t enough tears in the human body or words in any language to adequately convey that impossibly unreal and revoltingly unjust yearning.
There we were. The two of us. Mothers in the corner. Mothers at the bedside. Mothers at the mercy of her child’s body betraying itself. Mothers with only one massive, palpable, excruciating difference: my child is alive.
Words threaten to fail me even as they bubble up. They are inadequate anyway. The tears are like a faulty spigot that won’t stop dripping. All I can do is keep writing, in the hopes that something worthwhile flows through my fingertips.
When our daughter woke from intubation, she turned her face her Daddy and said to him, “I met your mom.”
Rosana had died in 1995, six years before our daughter was born. Michaelina said she knew immediately that it was her grandmother and that she was the most beautiful thing she had ever seen. She said she emerged from a wall of pink and red roses that stretched out across space in both directions into infinity. Rosana came to her and said, “Hello Michaelina,” to which she replied, “Hi Mom Mom.”
They embraced, and then Neal’s beautiful, kind, sweet, gracious, loving mother told our daughter it wasn’t her time. She instructed her to go back, and live.
As I shared this with Kim, perhaps stupidly, I didn’t question whether or not it was the right thing to do. I didn’t sense that I should hesitate or wonder if it was wrong or insensitive of me. Quite to the contrary, she looked relieved and filled with something not quite unlike joy at the hearing of it. She said she believed with her whole heart that it was real and true. She said she felt Sean’s spirit leave him and move through her the day he left this realm.
One might feel tempted to doubt what is appropriate to say or not say in excruciating times like this. She and I talked about that too. How some people just say the stupidest most thoughtless stuff to a traumatized mother… or worse, they don’t say anything at all. It sounds like a lose-lose proposition to someone who can’t fathom the agony, but Kim said she often found herself awestruck by the people who refused to even acknowledge what was happening in her life, as if it all would just go away if they walked away. Fade out like the end of a movie. I, myself, confided in a therapist in the wake of the trauma, saying, “People are telling me to be happy and thankful that she is okay now. But I’m not okay.”
Of course I’m grateful my daughter survived. It surely goes without saying. After some counseling, I slowly began to emerge from the thick, suffocating, post-traumatic fog surrounding that godawful experience and peel away the layers of humanity to take a look at the whole ordeal from a safer distance.
I can say for sure that I no longer subscribe to all the pat cliches like, what doesn’t kill you makes you stronger or God doesn’t give you anything you can’t handle or everything happens for a reason or it was (or wasn’t) meant to be. It’s all just so horrible and inescapable, and none of it even matters anyway. There are people who get it wrong, who ask all the wrong things all the wrong way. Some don’t even turn up at all. But they don’t think you’ve noticed, nor did they ever really intend to do harm.
Then there are the ones who hold you up, who ask you if you’re okay, who know you’re clearly not and sit beside you and let you be angry, or just rub your back and let you drop your very heavy head into your hands as the tears threaten to well up while refusing to fall. Those who know when to give you space and when to shut the hell up. There are the ones who text at all hours of the day and night for updates, who understand when you say you’re turning your phone off because you need to be fully present for your kid and pay attention to what’s happening, those who have their place in the room with you every minute of this hellish ride. There are those who send food, flowers, cards, notes, baskets and blankets, who call to ask if you need a razor, sweatpants, blueberry muffins or underwear.
Kim is made of some kind of gravity borne of gratitude, saying over and over that her friends are the reason she can even stand upright. She said she doesn’t believe she’d be here if it weren’t for the amazing friendship extended to her, the gracious, selfless outpouring of support, comfort and kindness that was shown to her and her family. She was compelled to create a 501(c)3 nonprofit organization, called Sean Fischel Connect, whose mission is for the charitable purpose of supporting children’s health and well being and to raise awareness and funding for the research and treatment of childhood diseases. The Sean Fischel Connect 5k is the race I had previously mentioned off-handedly to Neal that I wanted to do… and now I knew why.
I don’t enjoy lifting weights or going to the gym. I’d rather type for two hours and then hit the street and run until I don’t feel my legs anymore. As I shared with Kim, there’s this thing that happens when you’re running, this feeling you get – they call it the runner’s high – and you get goosebumps on the top of your head. It’s a euphoria, an exhilarating clarity, a profound sense of wholeness and connection with some sort of essence simultaneously inside and outside of yourself. You receive insight, wisdom and peace that perhaps wouldn’t otherwise be accessible. I was running about ten years after my Dad had died when his voice distinctly came to me and somehow communicated to me that whenever I run with intention, I’m capable of accessing a place that’s closer to him and others who have gone before me. Since then, I like to think that every time I go out for a run and set an intention, that the gap between realms closes just enough for him to know I’m there, and for me to know he’s still with me.
Writing works the same way. In writing about the fragility and preciousness of life, I am called to bridge the gap and close the chasm that separates us from one another. I obtain this simultaneous inward outwardness. By going in, I am able to emerge. By retreating to my corner, I can come out fighting. That same wholeness and connection I absorb from running is accessible as I watch the words unveil across the page. In honoring the pain in the lives of people I care about, I step out onto a ledge that overlooks a wide, broad plane, a realm I wouldn’t otherwise gaze upon. It is then that I embrace the two-way frequency that allows me to transmit and receive. The top of my head opens and the same light that shines down into it also shines upward and outward into the world beyond.
Standing on the front porch with Kim that night, I was transported back to those atrocious, heart-wrenching times and I know with a knowing that surpasses all understanding that this beautiful woman’s trauma was and is horrifying and real. And yet here she stands beside me, the very picture of grace, composure, kindness, gentleness, lightness and strength. And now I know what makes her so beautiful. I know what makes her so real.
I tell Kim I will pray for her every day, and I will set my intention on Sean each and every time I lace up my running shoes. She smiles and thanks me and then asks that when I pray, could I please pray for her to have grace and strength. That is why she works out so hard. Because this cruel, crazy, incomprehensible nightmare has taught her that for all the prayers that went up for Sean, she still lost him. She had to reconcile that to herself, so she shifted the way she prays. She now knows she needs to pray, and ask others to pray, for the Holy Spirit to fill her with love, to fuel her faith, knowing that strength is ultimately the only thing that will get her through the day.
Believe me, Kim. That is the very least I can do.