08/30/2026
Friday night, I sat cross-legged on the undersized green vinyl bench of “ED #1”, lumpy with the buttocks impressions left behind by terrified parents and loved ones in a designated trauma room of the emergency department, taking in all the all-too-familiar sights and sounds, as my baby dozed in a Toradol and Compazine cocktail slumber, finally seeming to be free enough from pain to actually rest…As I glanced around the room at cabinets adorned with labels like “chest tube” and “thoracotomy” and countless others that I was acutely aware were used to bring children back from the slippery precipice of death, I found myself coping with the stress in my frequent macabre way, thinking, “Man, if this bench could talk, I’d bet she’d have some stories to tell,” while also being grateful to have the bench underneath me to keep me somewhat grounded in the emotional turmoil of all that was transpiring…
Quite thankfully, it was not an imminently life-threatening illness or injury that earned Isadora a spot in that place… We landed in that particular room after another child needed the negative pressure one she was originally assigned to, apparently due to chicken pox…I, of course, did not object to the move as a (mostly) compliant and cooperative caregiver, and was fine to offer up the specialized space for a patient in need of it…(But I will admit, I also couldn’t help but think for a moment of the stark contrast as to how that ubiquitous ailment of my 1980s childhood was handled when I was hit with the contagious itchy red dots, I believe when I was in 3rd grade—home from school for a few days, lounging in my mom’s cozy flannel pajamas, a soak or two in a bathtub turned into a soothing cauldron for what felt like “oatmeal and me” stew, and being transformed into a calamine lotion polka dot canvas…)
That said, being that myotonic dystrophy IS a life-threatening illness all by itself, along with the kids’ adrenal insufficiency, in which their already-dinged bodies also, and due to an unrelated separate comorbidity, don’t make enough cortisol to function normally on a daily basis, let alone save themselves in a serious accident or ailment…So though, I suppose that we didn’t technically belong in that room that night…we also kind of, sort of DID…
After three days of Isadora’s increasing abdominal pain, accompanied by severe headache, back ache, and lower-than-normal heart rate, the executive decision was made during Friday’s multi-provider clinic appointment to forgo the rest of the day and head across the street to the emergency department for evaluation of her bizarre and utterly exhausting symptoms, given that she actually slept through most of Lukas’ and her own visits. By the time she was wheeled into ED #1, we had been there for well over six hours, and while she didn’t appear to be on the verge of something horrific happening just then, I realized that my body and my mind could not agree upon that being an accurate fact…And though I was seated, I honestly felt like I was swirling a bit in that room, foolishly reading every label, looking at every poster describing protocols for life-saving procedures and then subsequently wishing I hadn’t…
I found myself transformed back to October 15, 2021, in a different hospital across town, when Gianna had her first brush with death, going into sudden respiratory failure in the emergency department, in a room just like that, that I truly have no recollection of how she got into, though I was by her side the entire time as she was whisked in from the triage area, seemingly minutes after we arrived, and just a short time after I woke her for school and my gut told me that something was NOT right at all…And then six months later in another similar room with her jaw being spontaneously stuck open for the third time in four months, that time becoming so severely swollen and stubbornly dislocated that it required a high dose of ketamine to get her relaxed enough to force it back into place, which then left her completely zonked out for the next twelve hours…
So yeah, I guess it stands to reason that being in a trauma room is…well…pretty traumatic for me…And it certainly didn’t help that a kid came in shortly after we were relocated there who was CLEARLY in a rough situation, and was just on the other side of the glass partition, which was far from soundproof and thin enough that I could actually FEEL the angst emanating from the shadowy figures of the parents, knowing so well that feeling of inescapable powerlessness that permeates every cell in your being as you watch your beloved children endure lifesaving and/or life-sustaining medical treatment…
The interesting part in all of our final hours in the emergency room prior to Isadora being moved up to a hospital room was that she was mostly unfazed by it…The child’s screaming and cursing did wake her up, and did make her say, “I want to go home,” but only briefly, as she corrected herself, knowing that she was not going ANYWHERE with her gut and her head in so much discomfort, then saying, “Well, really I just want to go back to sleep.” Even though she was only awake for a little while during the day on Saturday, my sweet little intuitive and empathetic daughter did recollect and recognize how difficult that ordeal in the trauma room had been for ME the night prior, without even knowing why, since it was just Gianna and me in those anguish-filled moments of the past, but obviously, and as per usual, Isadora was quite in tune with the energy and angst I was clearly emanating myself…
After initial testing and now a full 24 hours into the hospital admission, the only confirmation currently as to what is going on is that some myotonic dystrophy-related dysmotility and digestive woes are definitely in play, while no infection, virus, or other obviously terrible thing can account for the back pain and headache…Oh, and it has been confirmed that the only thing to keep her pain manageable is Toradol on the regular, which also has allowed her to sleep for the greater portion of the last two days, despite it not technically having any actual sedative side effects, but clear evidence that she really is in a world of fatiguing agony…
She did finally eat a bit tonight, through the pain, but I feel it’s a good sign that the nausea has subsided enough to at least get some nourishment in her little body as it fights off and/or attempts to recover from whatever else is ailing her and causing her head to ache so…At the moment, we’re in a pain management/rest/get the gut moving mode, and she is up for an MRI on Monday, should the cranium distress persist, and then the hopes are that we can get out of here without her missing too much of the first week of school, which starts on Tuesday. Though that reality is already weighing on her mind, I’m proud of my persistent worrier for recognizing that her health takes precedence over all things academic, and that she’ll get there as soon as she’s feeling up for it…
In the meantime, the plan is to try to get Lukas up here for a visit, since Isadora was not up for visitors on Saturday…Though they are “used to it,” and as stoic as they may come across, these times of being separated by the hospital are, in fact, quite difficult for my kiddos, having now experienced it so much with both Giacomo and Gianna, as well as each other, and this time, with her here for the exact same thing that landed Lukas in this joint last spring…and very closely related to what ultimately led to the end of earthly times for their siblings…
For as much as you might think that at this point, us being so familiar with hospital stays makes them almost feel “normal,” no matter how much time has passed or how much altered normalcy of chronic health debacles has been established, that emotional whirlpool of trauma is just one blip of a memory away from all coming swirling right back, with no reprieve or rescue possible…
