G’s Last Stand/Lukas' Final Journey

G’s Last Stand/Lukas' Final Journey Thank you amazing supporters & followers! This page was started in honor of Giacomo, (G,) during his final leg of earthly life.

His incredible brother, Lukas, is now on the beginning stages of that same journey and hoping to make the most of what’s left!

Today, September 15, is International Myotonic Dystrophy Awareness Day. In the past, I have shared posts related to the ...
09/16/2026

Today, September 15, is International Myotonic Dystrophy Awareness Day. In the past, I have shared posts related to the disease and our journey with it, but all I can think about today is how every single damn day is “Myotonic Dystrophy Awareness Day” for me. There are few hours that pass in any given day in which I’m not thinking about it, remembering my two children who were ripped away from me as a result of it, planning some life activity with it in mind, scheduling an appointment, attending an appointment, or being acutely aware of the fact that I have not been able to work at my full capacity as a result of the disease for near a decade. It has altered the entire course of my life, strained relationships, and left me feeling alienated by friends and family. It first caused an abrupt shift in my career as I could no longer be on call to attend births as a doula, and since then, I have watched the business that I poured so much love, passion, and unending dedication into, all but dry up completely, as so much of the last five years has been spent dedicated to my ill and dying children, leaving me unavailable for the referrals that drove what was once a thriving lactation and craniosacral therapy practice.

This disease is not mine, but it is become so pernicious that I honestly don’t even remember parts of me that existed before it entered my life. In countless ways, it has changed me for the better and transformed me into the mother that I am, and for that I am grateful, but I actually think I was a pretty damn good mom before I got this death sentence for my kids. I have always wanted to be a mother, and I changed my own career goals so that I could spend as much time nurturing and enjoying my children as possible long before I knew that my time with them would be cut short. It is without question or embellishment that I have honestly always valued every single second with them, and never wished a moment of it away, not once doing that thing that so many parents do by longing for time to pass, landing their child at a different age or in a different stage…

And as much as I don’t throw stones and accuse life of not being fair, because it’s simply not, sometimes I do sit and cry alone in the unfairness of the fact that there are so many mothers and parents out there who don’t appreciate their children, are openly critical of them, and do positively heinous things to them, and yet I am the one who has done nothing but cherish mine, only to have them plucked away from me, one by one with the Grim Reaper always standing outside my door, ready to rob me again…

I sit here now, on international Myotonic Dystrophy day, now 18 days into a hospitalization for Isadora that truly has no end in sight. Every single doctor on her team and all of us who are close to this situation recognize that there is no way of knowing how this all pans out. As it stands right now, her whole digestive system remains to be far from functioning. We are trickling small bits of nutrition in her in the form of formula through her nasal gastric tube, in the hopes that it will work its way through her system, though the evidence of that working is yet to be determined, and it’s being done so through a whole host of medications, all of which have been added basically at the same time, so it’s impossible to really tell which one, if any of them, may actually be working.

In an effort to not remain completely helpless, I have brought in our “Waver” vibration plate from home as a means to try to mechanically stimulate her gut, as well as get my body moving a little bit since sitting around tends to oddly be quite tiring, and I need to ensure that I am staying in my best form possible to care for Isadora and Lukas. All of her doctors are surprisingly very supportive of this little bit of unconventional, but seemingly beneficial, physical therapy for her, as we have to try everything possible to get this girl on the best digestive path we can. One of them, our favorite neurologist, even tried it out himself, which I must say was the highlight of this entire debacle, and I so desperately wish I would’ve gotten a photo of it… Everyone here and involved in her care is in a perplexed state of humble hope, drizzled with the stark reality that is an entirely possible Isadora’s gut may not ever fully wake up and get back to work again, and for probably the first time ever in all of the hospitalizations over the years, not a single person here is leading with an ego, but all rather, with curiosity and empathy for our situation…

As it stands right now, we are going to keep trying to get a little bit more formula in her, very slowly, and we’ll see what her body does with it… The plan as of a couple of days ago was to give it about a week, and at that point, if it seems like she will need to have the support of a feeding tube, it will get switched over from the nasal gastric tube to a full gastrostomy tube going directly into her stomach, or possibly needing to bypass the stomach and go straight into her small intestine, as was ultimately done with Gianna and Giacomo. If this doesn’t work, we all know that IV nutrition is looming back there, as there has to be some way of nourishing her, in order to get this little bright light out of the hospital and back to where she belongs— at home, at school, in the dance studio, on the choir risers, and theater stage…

In the interim, we remain so grateful for the now-fantastically collaborative care, in which everyone who has been interacting with Isadora seems to understand the mystifying and unpredictable digestive path we are on, for amazing friends who show up with soup and giggles, including our dear Maya, Gianna’s best friend, who stopped by for Taco Tuesday today, Broadway Bingo, and this very special time as a family that maybe be emotionally taxing and terrifying, but is also interwoven with intense UNO games, tender moments of watchfulness and joint slumber, quiet sibling bonding, and late-night laughs to avoid crying…

So yeah, despite the deep emotionally dark pool I’m in right now, I feel I must still wish everyone a happy International Myotonic Dystrophy Awareness Day….And to all of my fellow caregivers who know exactly what I am talking about with this post, and who live with the same daily awareness of this wretched disease, sending you all lots of love, peace, strength, courage, and the hopes that your medical providers are becoming a little bit more cognizant of all of the nuances of DM every single time you encounter them with your loved ones…And that with all we endure, every single interaction creates more opportunity for the awareness to lead to more compassionate, curious, and collaborative care…

When Gianna was in the final stage of her life, just three floors down from where we currently sit, every morning I woul...
09/12/2026

When Gianna was in the final stage of her life, just three floors down from where we currently sit, every morning I would round with the team, which included a combination of attending, fellow, and resident doctors, sometimes students, a pharmacist, nurses, maybe a social worker, and anybody else who was deemed to have some sort of input on her care. After they rattled off all of their updates, I would conclude the rounds by asking them each day for three requests regarding her care:
1. To minimize her pain and trauma, 2. To do that for as long as they could to optimize the time I had left with her, and 3. To stay curious—to recognize that she had an extremely rare disease and was there under unique circumstances that warranted a little more digging…That if they were so inclined to distract themselves by scrolling social media, that maybe, instead, they would research myotonic dystrophy a little bit and try to see how they might be able to help her achieve requests one and two…

The outcomes of all that, of course, is fodder for my first book, but we have presently landed in a place where it was necessary for me to repeat that request two days to the team as they rounded, but this time with a very firm and direct delivery that also now included a plea for them to not blow off my concerns, to not treat her as though she was just any other patient there with digestive issues, and to understand that the last time that doctors didn’t listen to me resulted in my oldest son now residing atop my mantle in cremain form, cozied up next to his best friend and sister. As perhaps jolting and maybe even a bit macabre a statement as that was, I felt it necessary to drive home my point in a way it would stick, as I cannot allow Isadora, or Lukas, for that matter, to receive care that ultimately shortens their already shortened life, merely as a result of people having an ego or a narrow mind around the complexities of myotonic dystrophy…

The delay in this update comes not from having nothing to report, but from the report being honestly just too emotional, draining, and terrifying for me to put down easily, in addition to it being one giant unknown of what to even fathom or anticipate next. To sum it up, the path that we were taking to remedy Isadora’s digestive woes, one that should have theoretically worked and actually did work for her brother back in March, has not worked….In fact, we now recognize that hers is a far greater woe than was recognized earlier, and, per her providers, we are now using the phrase “severe dysmotility” to describe what’s going on…

This was discovered when, earlier in the week, after two days of me asking for it, Isadora had a CT scan done of her abdomen that detected a “functional ileus”, which means part of her digestive muscles have decided to just stop working, seemingly in multiple spots. The “functional” part means that this occurred as a result of her gut function, or lack thereof, not as a physical obstruction. This part is actually mildly reassuring, as an intestinal blockage that resembled Gianna attempting to tie her small intestines into a bow as an early Christmas gift was the beginning of her end, so the good news is that we don’t see any physical, and also potentially imminently dangerous, occlusion in Isadora’s intestines as of right now. The bad news is that we don’t know if this slowing down, or pseudo-obstruction as it’s often referred to, is a result of her being pumped full of GoLytely (as in, over 50 liters of the intense liquid over the course of the last week!!!), if this was the issue that landed her here now two weeks ago, or a combination of both. Either way, it’s safe to say that myotonic dystrophy has caused her gut to slow down so terribly, and we are in a very precarious place…

Needless to say, this has been pretty awful news to receive. Even more so was that the initial response from the GI doctor who was on service when the CT came back was that it “looked okay” because it wasn’t a horrifically scary thing, per her estimations…But when you know this disease like I know this disease, and you know what it does, any signs of decline are not good ones, and Isadora’s signs of decline in the past years, both respiratory and digestive, have been such a huge blow to her and our whole entire family, that to dismiss her just showing up in the hospital with a gut that isn’t really working right now almost as it were no big deal, to consider pumping her full of more Go-Lytely, despite her having an insane amount already AND it not working, PLUS her continuing to be in a great deal of pain, isn’t the most reassuring thing for me…

Yes, I did have a strong (and slightly tearful) response to that notion, citing Giacomo’s CT back in October of 2024, three months before his earthly transition out of here, that didn’t look “that bad,” though it was intuitively (to me, at least) a clear indication of the beginning of his end. I believe that got the attention of at least most of the team, and gleaned support for my suggestion/desires to stop giving her more of a medication that wasn’t helping and could possibly be causing harm at this point, and to acknowledge the need to be circumspect with Isadora’s situation. We then spent a couple of days trying to get her gut to calm down, during which time she was only allowed to have a maximum of one ounce of liquids every hour, slowly adding in a bit more, and yesterday we were able to bump that up to her being able to try full liquids (see the pic of her absolute delight to have a smoothie!) She is now on day ten of no solid food of any sort, and we decidely don’t have any idea what’s going to happen next, though we plan to start her on some of the same formula her brother had to get her some more nutrition, as she is clearly depleted, having already lost eight pounds and visibly looking and feeling thinner…

Though my gut feeling (pun intended) all along that something was more than slightly awry with Isadora has been lingering, as of yesterday, the reality and uncertainty of the situation became palpable for all parties involved, both medically and among those who know our family journey. This came even more so after we had probably one of the best, most productive, and collaborative rounding sessions yesterday with the attending pediatric doctor, the neurologist on service this week, and the GI doc who came on, who happens to be the primary GI doc for all four kids, after also having a wonderful conversation with her primary neurologist yesterday, who comes on service for the week today. It is now clear we are in a pretty precarious place with her gut, but everyone is acting with an abundance of caution and an understanding of the need to very much work together on this one. We have some new meds coming on board to try to wake up her very sleepy upper gut and some to try to stimulate her lower intestines, but at this point there is no way of knowing what her digestive system will do with all this. We have been trialing a medication that is used with a lot of myotonic dystrophy patients to help with the cramping, or myotonia, of the hands, in essence, for the myotonia that causes excessive dysmotility in the gut as a result of the impaired communication between the brain and the digestive tract. Thankfully, Isadora has not had any of the cardiac issues that Lukas had when he tried it, so there’s a strong possibility that we will be able to use this medication to help move things along on a regular basis. At this point, we’re not yet at peak effectiveness, so it’s not possible to tell whether it’s truly working, also because her gut really isn’t functioning much at all. We’ve decided to try one medication that worked well for Gianna and Giacomo to be able to tap into the whole “quality of life” thing by allowing them to take in food by mouth in their last bit of earthly time, even though it didn’t fix the broken gut. We’re also going to try another one to hopefully move things along in the small intestine, as an alternative to one we tried with both G and Lukas, without success…So basically, we’re treating Isadora’s gut like one giant digestive chemistry experiment, but no other alternatives exist at the moment, so this seems like the most viable option, at present…

Difficult conversations and musings are happening, and Isadora is the one who is leading them, with her ongoing and underlying fear that what happened to her siblings is happening to her, and that her digestive system will never go back to anything remotely close to what it was. As painful as it is, I am happy that I have instilled enough trust and self-assurance in her that she has no problem telling me over and over again how she’s feeling emotionally and that she’s afraid that she’s dying. I, of course, cannot offer her any solace, except to say that I feel like she has some more time left, and that she arrived here at the hospital in a less dire state than Gianna and Giacomo had, which bodes well for her care and the ability to act proactively versus reactively. Though we have talked about things like feeding tubes and IV nutrition in the past, they have reentered the conversation, just in case they may be on the horizon, in an effort to ensure she has as much autonomy as possible in these big life-altering decisions…Cautious optimism runs rampant, wrapped up in a thick coat of incertitude…And while we remain hopeful, of course, I can’t stop thinking about the fact that in my mind she was eating and drinking and functioning quite normally a little over two weeks ago, and now all of that seems to be flushed down the toilet (a bit of a pun intended). She and Lukas have commented to me and to others about the fact that she could be the “next one to go”, and that feels oddly unfathomable to me, despite having had the reality of this disease hit me in the face twice in the last 3 1/2 years…

Needless to say, all of us over here are pretty concerned in this déjà vu-all-over-again of a situation, and there’s nothing to say other than this f*@$ing sucks. Even at the two-week mark of this stint, I, along with the rest of the team, honestly have absolutely no clue when Isadora will get out of this hospital, what it will take to make that happen, and what life will look like then. It feels as though there’s a decent chance that there may be a big shift for her, and obviously, we are no strangers to unexpected outcomes and alterations in the trajectory, so we will adjust accordingly, if need be… I am staying as hopeful, yet realistic as possible. At this moment in time, my usual put-on-a-happy-face is really only reserved for those moments when Isadora has a sunny spot in her day, usually brought upon by a therapy dog, an art project, in-room bingo and trivia, feeling well enough to do some ballet stretches, Lukas stopping by to watch Big Brother, FaceTime calls from her classmates, and in-person visitors, which have been the BEST and most welcome distraction for her…And I will honestly say that right now, on top of her fear, Isadora has also got a fabulous attitude, which is not surprising. If you’ve ever actually interacted with her, you know this is, because she is hands-down the brightest little light that has ever shone in this 3-D world, and even in all this darkness, she’s keeping that flicker illuminated…

But looking at the pictures we’ve taken over the past week or so, I think I’m getting less and less able to hide how positively fried and terrified I am…In full transparency, I’m sharing the last photo to give a real glimpse of what my face looks like most of the time, taken just moments after Isadora’s nurse popped in for the first visit of the day to do her assessment, without even disturbing my baby’s slumber…The tears were already right there, ready to spill over my emotional dam, building pressure as I watched her listen to Isadora’s bowel sounds (i.e., signs that her digestive system is doing its normal thing) and also already knowing the answer before I asked how they sounded, based upon the look on her face--Very quiet (which is obviously not a good thing)…It was at that moment that we recognized each other from when she took care of Gianna here for the few days she spent on this floor before she went downstairs to the operating room, and eventually the pediatric ICU where she took her final breath. Even before I could get the words out that Gianna didn’t make it—to offer the “end of the story” to one of the many amazing medical staff that we’ve had over the years who have no clue what happens after we’ve left the room, due to HIPAA and hospital privacy policies—the dam burst open, and the tears were cascading down from my weary eyes, over my melancholy cheeks…Tears of sadness, worry, grief, and exhaustion, interwoven with hope, gratitude, and relief that I do actually trust that Isadora is in the best possible place to receive the specialized and personalized care that she needs for this wildly unpredictable disease and what it’s currently doing to her, despite this facility being a cavern of past trauma, grief, and relentless stress for all of us….

Foggy, but familiar… Those words came to me yesterday as I worked on formulating an update, and I feel they also offered...
09/07/2026

Foggy, but familiar…

Those words came to me yesterday as I worked on formulating an update, and I feel they also offered an explanation, perhaps, for why I have not, up to this point…As to why I have been a bit (and justifiably) stalled… Much of the delay, I will admit, has to do with my utter state of fogginess. I am physically tired, though I have been actually getting a bit of sleep, albeit interrupted, but at least more than I often do during these hospital sessions, having had some nights in the past of averaging less than 3 hours of pseudo-rest… And while I have certainly had times bearing witness to my children’s near-death and death, and I don’t feel that’s what’s happening right at this moment, there is something in particular about Isadora landing in this space, in this way, that has opened up a new pathway on her journey in that direction… Or, in truth, being that it is the beginning of her gut shutting down, that pathway no longer functioning as it should, that would ultimately mean her demise, as it was for Gianna and Giacomo, and could easily be Lukas as well, given that this whole experience is very much like the one that we had with him last March…

So, we’re now solidly over a week into what was initially not anticipated to be a hospitalization at all, and if that, perhaps a couple of days…However, one would think that at this point, now having spent the greater portion of a year of my life in collective hospital stays with my kids, I would stop with the whole speculation thing… I had been hopeful a few days ago that maybe we would be home by the weekend, which then shifted to home by Monday, but now that it’s Sunday, that’s not even a remote possibility, so we’re keeping our eye on the prize of her making it out of here in time for her first dance class, which isn’t until Saturday…

In an effort to maintain Isadora’s privacy, I won’t give full details of her ailment, but I will just say that her digestive system is very clearly NOT functioning as it’s supposed to be, as a result of the myotonic dystrophy (DM) negatively impacting the muscular function of her gastrointestinal system, much more severely than it has been in the past. We dealt with this in a similar fashion with her last January, and I had thought that it was under control, which has proven to be completely false. It is now abundantly clear that there is no getting her “back to normal,” which will not occur, but to a new starting point, so that we can determine what medication’s and treatment methods will work best to prevent this from happening in such a severe manner in the future, thus establishing a “new normal,” hoping that whatever techniques we land on will last, for at least a while.

We started this process to resolve Isadora’s gut last Saturday and stayed that particular course for three days, during which time she still was in significant pain in her belly, head, and back. By Monday, I realized it was probably time to change the plan, repeat the abdominal X-ray to see exactly what, if any, progress had been made, and to very likely bring out some bigger guns to attack the dysmotility demons. Unfortunately, despite my mentioning it and requesting that GI come in to consult, none of this took place until Wednesday. And while some of this had to do with things being notably worse than we thought it, much of the delay has largely been from a communication breakdown between teams, or what I have commonly referred to as folks here playing “The Most Effed Up Game of Telephone, EVER”…and not inviting the most pivotal, skilled, and experienced—dare I say EXPERT—player to the game…which, of course, is ME…

This combination of being in a situation that is so familiar, in SOOO many ways, is largely contributing to the stress that I know is causing my fogginess, my inability to fully think clearly, and feeling as though I’m going to break down at any moment in time. Of course I’m doing what I always do, which is trying to hold it all together and put on a bright face for my kids, but they are also highly intuitive and aware, not to mention they’re also feeling the déjà vu of this place, and the DM digestive debacle, so I know they have a sense of how rough this is for me…Overall, I have been able to maintain the emotional dam in place to keep my tears at bay, but I have definitely had moments of having to just cry all by myself, typically during the quick drives back and forth home to fetch/deliver Lukas and other necessary supplies that come with unexpectedly prolonged hospital stays…Sitting in my own cloud of incredulity, despite having the knowledge that this is very real, it is very scary, and, ultimately, it doesn’t end well…

Though I was understandably not pleased with the poor communication between teams, having had a great deal of experience with this sort of thing in the past, thankfully I also have a great deal of experience with having to advocate for my children, so come Thursday rounds, I calmly, but firmly (and maybe with a few tears) explained to the team why I was so frustrated, how I felt like we had spent 2+ days making zero progress in Isadora’s recovery, offering a condensed version of my tragic tale as reinforcement as to why we cannot just let Isadora fall through the cracks of a shattered system, and that I NEEDED them to improve the collaboration with all parties involved, including and especially…me…

As I mentioned earlier, this has been largely a positive experience as far as provider collaboration goes, which remains to be true, and I do believe that they listened to me. There have been some improvements in the team making a more concerted effort to close the loop with one another and round either together or in a relatively close timeframe to ensure that the plan of care remains more consistent. Additionally, I have requested/confirmed that the neurology team remains to be, overall, “the bosses” of Isadora, having final say in big decisions, including, but not limited to, when it is deemed safe for her to go home, as they are the ones who understand this beyond complicated, predictably unpredictable disease better than the other specialties and general peds team (and who have acknowledged multiple times during this stay that I probably know it even better than they do)…

We will remain here for an undisclosed amount of time, as my baby is still very much lingering around in the woods, with a body that is tired, in pain, and clearly not functioning as it should be or has been, along with a spirit that is discouraged and worried, and I will say that today has brought about even more concern, as she is completely wiped out and fell alseep for the night long before the sun had even considered setting…

We have done our best to try to distract and uplift her with a variety of games, art therapy, visitors, canine buddies (with extra fun for therapy dog legend, Fern’s birthday festivities), walks to stir our blood, music, and various forms of clear liquids not found on the hospital menu. She has put out a request for some more friends to stop by, so if you’re reading this and are so inclined, feel free to head over and fulfill this desire for her, as this sweet girl is deserving of all the love, kindness, and healing energy she can get…

And this mama will remain, for now, in the state of foggy familiarity…With a mind clouded by worry, frustration, disbelief, uncertainty, and shock, a heart that throbs with feelings of love, sadness, grief—both anticipatory and present, unbearable pain, and gratitude for the care, kindness, and support that we have encountered thus far, and a spirit that must remain cautiously optimistic, in spite of having traversed through this bewildering, murky haze of myotonic dystrophy-induced digestive failure twice before…

I’m going to interrupt the full hospital updates, which have been moderately frustrating and were stagnant at the time I...
09/05/2026

I’m going to interrupt the full hospital updates, which have been moderately frustrating and were stagnant at the time I initially started this post (but will continue later, as some progress seems to be on the horizon), with something slightly more uplifting (if you read it all the way through), albeit bittersweet…

Three years ago, right around this time, I sent my three remaining living children off to their first day of school, and I shared a post that day about how I’m not one to tend to shed tears on back-to-school days, as it is, in my opinion, something exciting to mark the kids achieving that next step in life. However, on that particular September morning, back in 2023, after Giacomo, Lukas, and Isadora were off to their respective instructional institutions, I was suddenly overcome by the fact that Gianna hadn’t made it to that milestone, which should’ve been her senior year of high school, and was, instead, now done with her physical life and off frolicking somewhere in the great beyond. Up to that point, nearly six months since her earthly death, I had hardly seen any hummingbirds, her chosen spirit animal, and the ones I had seen were in the presence of other people, who were clearly the targets for her beautiful light and energy in those moments. I was completely okay with that, as I have countless memories of her to keep her alive in my soul, and I have always felt that the hummingbird sightings are a fantastic way for others to remember her as well. Yet, that day, as I sat sobbing alone in my bathroom, in my personal deluge of emotions, I asked for Gianna to come to me and send me a hummingbird, just to say hello and illuminate that dark day that would typically have been such a bright one…And wouldn’t you know it?? Within a few minutes of casting my request out into the far-off dimensions, a tiny fluttering winged wonder appeared outside my kitchen window, temporarily replacing my painful tears with a peaceful smile…

This past Tuesday, September 1st, marked the beginning of school for Lukas and Isadora—Lukas in his first year at his transition program (or 13th grade, as we like to call it) and Isadora in the 10th grade…. However, as you can see in my back-to-school photo op, Lukas stood alone on the stoop while his little sister slumbered in a hospital bed across town. I woke early and left her bedside briefly to run home to be able to see him off for his first day, and as I walked in the door and saw him sitting at the kitchen counter eating his breakfast, a pit of anticipatory grief washed over me, almost as if it were a prescient vision. Though I do not feel as though death is knocking at Isadora’s hospital room door at the moment, I can’t help but fear that it is going to sn**ch her up just as it did her siblings, and perhaps in an even more unxpected manner, which is why when she said to me the day before through restrained tears, “I’m afraid that I’m going to die,” there was absolutely nothing I could do to console her, as that would be an invalidation of all of our experiences and a denial of reality. Instead, I just held her and tried to reassure her that everyone is taking the best care of her they possibly can. And while we tend to be very open as a family and talk frankly about all things life, death, and beyond, I did not tell Lukas that Isadora had shared her deep fear with me, as he declared after Gianna left us that he “had to be next,” as he could not bear the thought of watching another one of his siblings die, only to have that take place eight months later, and I cannot imagine what would happen if another one of his siblings—-the last one, in fact,— cuts in line once again.

So yeah, I didn’t mention any of those things with him, but instead just joined in his excitement about him heading off to WELS (Work Experience Life Skills) transition program, which is also insanely bittersweet, given that Giacomo spent 2 1/2 years there and loved every minute of it, and it was so sad when he realized he was never going to go back as he wasn’t going to live long enough to return… I fought back tears the entire time that we walked through that school last week for his open house, seeing G’s old teachers and his designated/chosen seats in his old classrooms, which were now becoming Lukas’. As I often do, I had to shove my own emotions aside to leave space for Lukas to remain energized and excited about sitting in those classrooms and participating in all the fun activities, rather than thinking about the fact that his big brother’s time there was cut short by 1.5 years, and that his sister never even made it there as she should have—that Gianna should be there riding right alongside him on that bus.

I packed his lunch and got him at the door with time to spare, and then spent a few minutes tidying things up around the house, tending to the chickens, and gathering items for Isadora’s hospital “rider” list, as there is no end in sight right now to her departure home. As I bustled around, trying to get back to my little one as soon as possible, I honestly wasn’t even thinking at all about that hummingbird visit from 2023, which is probably precisely why I happened to glance up and see that flitting magical little creature outside the window, looking directly at me. Of course I tried to grab my phone and snap a photo or a video, and it was gone before I had a chance, which is why I just took that first photo in honor of the fact that it had been there, if only briefly…

But then, modeling what Gianna demonstrated in birth and in death, as well as all throughout her life—that she would do things at her own time, in the way that she defined to be the most fitting—that little lady hummingbird came back, not stopping to feed on any of the nectar in my multiple feeders, or from any of the flowers of her pollinator garden, but just to park outside the window, look me square in the face, intently and with transcendent purpose, ensuring she had my focused attention… She perched for just a minute on the arch in the garden, reminding me of the important lesson Gianna had taught me during her final earthside weeks—the immeasurable value of resting and pausing in all of the chaos of life, and especially in the chaos of these hospitalizations, particularly this one that has been so emotionally and psychologically draining on me…And then, that humming beauty came back one more time, even pausing for a picture that time to make sure I remembered, looking even more deeply into my eyes and my soul, as if to say, “Mama. I know you’re worried about her—about both of them—and you have every right to be, but you already know that worrying will not change a thing, so for right now, here’s another peaceful smile for you to take throughout your day, because you most definitely need that.”

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