G’s Last Stand/Lukas' Final Journey, 2450 Riverside Ave, Minneapolis, MN (2026)

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

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…

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.”

09/04/2026

From a few days ago…

We are now four+ days into this most current medical adventure, and as these things always tend to go, it is a mixed bag of good news and bad news, all kind of mashed together…

The good news is that we had Isadora’s MRI Monday morning, and there is nothing scary or horrible to indicate why she is having the sudden headaches…The other good news is that she was able to tolerate the entire thing awake instead of having to be sedated as she did the last time she had this a few years ago, which led to a bizarre illness immediately after, at that time, and given that her respiratory function has diminished notably in the past year, plus the additional risks that myotonic dystrophy brings to the sedation party, NOT using it is always preferable over using it…

Some additional good news is that we seem to be getting somewhat of a handle on her slow motility and digestive woes, and she has had far more energy the last two days, which means that we have been able to follow my late, but perpetually great, Grandma Rose’s advice that one must “stir your blood” every single day, plus provide a much-needed distraction for Isadora. We’ve had some great visits as a family, had our buddy, Fern the Therapy Dog, stop by, found our way to the “End Zone” play area for a couple of board games, and got some outside time to shoot a few hoops and relax on the playground, which was particularly bittersweet, given the number of days/weeks/months that we spent out there together during the summer of 2019, and we could not help but reminisce about all the fun we had there, in the midst of a nightmare of a situation…(Props to photographer Michael, who got some fantastic candid shots of the three of us down there as he was working up in Isadora’s room.)

The bad news is that we still don’t know why she’s having this headache, though it seems to possibly be musculoskeletal in nature, so related good news is that the docs have ordered some integrative therapies for her, PLUS my amazing friend, Julie, who is a veteran physical therapist at a neighboring children’s hospital, popped over this evening and worked a little of her magic to help alleviate Isadora’s discomfort and provide some company while I made a quick jaunt home for supplies….Because….

The other bad news is that we’re still clearly in the hospital, and not really sure of when she might get out of here, as she’s still not at baseline at all from a gut or pain standpoint, and her heart rate has still had some points of being peculiarly low. Plus, she will be starting a new trial of a medication tomorrow to hopefully prevent this gut problem from returning that requires some additional cardiac monitoring. I will say, however, that the abundance of caution that is being offered to Isadora truly is good news, especially given the insane missteps (spending 4.5 years spinning my wheels trying to get a diagnosis for Giacomo, dodging judgement and an accusations of having Munchausen by proxy, courtesy of our former pediatrician), near-tragedy (the failure to listen to me that resulted in Giacomo’s famous “Code Blue” moment with a permanant tracheostomy as his parting gift), and actual tragedy (Giacomo getting booted out of the hosptial completely unable to be nourished, leaving him so distrustful that he refused any more of their care and led to his early earthly death,) that has plagued our family due to being dismissed by the medical system. So yeah, it’s no shock that having my kids’ highly complex medical situation and my mama bear intuition disregarded is a HUGE trauma trigger for me, in addition to just being shoddy care…

HOWEVER, that is the exact OPPOSITE of what is happening this time around…From our first night in the emergency room, when we were so fortunate to have the same doc care for Isadora who had cared for Lukas back in March when he presented with a very similar situation, to the peds team who is giving Isadora automony and being patient with her unique needs, to the neurologist on service this week who doesn’t really know us (save for a bit from Gianna’s time here in 2023), but has taken the time to get to know us, has actually LISTENED to our complicated tale, and plans to keep Isadora here until we ALL feel like she’s completely out of the woods, to the respiratory therapists, as they ensure that Isadora’s daily pulmonary cares were done so we don’t add more problems to the existing list....

One respiratory therapist, in particular, said one of the kindest, humblest things to me that I have experienced throughout over two decades of being entrenched in the medical world. Last night she asked me a few questions about myotonic dystrophy, which, of course, opened up the door for my condensed retelling of the wild journey, and as I wrapped it up as succinctly as possible, she provided a salve for my emotional wounds, once again gashed wide open by yet another hosptialization, by simply saying, “Thank you for trusting us again and giving us another chance to care for your children.”

Even thinking about it now brings tears to my eyes, which has not been hard to do these past 100+ hours. So often, I don’t even think about how outrageous and tumultuous this life of mine is, but in moments like those, when someone is truly and intently soaking it in, without pity, but instead with genuine curiosity, I am, myself, taken aback by all that we’ve been through, and all that is to come…I felt validated and understood, and while it didn’t take that pit out of my stomach or the ache from my fractured heart or make my foggy, stress-laden mind any clearer, it did offer some sense of vindication and healing from all that I have endured from those providers who abandoned me, my children, and honestly the field of medicine by NOT listening, NOT being curious, and NOT providing the care that we, and every single person who entrusts their lives and the lives of their precious loved ones, deserves.

So, yeah, the real good news, wrapped up in the bad, and some that is really non-existent at this point, is that, while this is not at all where we want to be right now, there is an element of faith and trust that is undergoing a much-needed restoration for me after SOOOO much shattered devastation over the years, one positive bedside interaction at a time…And for that, I am most certainly grateful, and recognize that if we have to be here, this bit of healing is a most welcome side effect.

09/01/2026

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…

07/28/2026

Lukas’ Final Journey!!! Day 19-21

Every memorable road trip involves three essential ingredients: storms, rainbows, and pots of gold…

The storms may be meteorological in nature, and though the ones seen from afar—-such as rain pouring from the clouds over the mountains like tiny wispy waterfalls, silenced only by the distance—tend to be preferable, sometimes even the downpours that force you to take shelter under the closest brick tent lead to most memorable and poignant moments, once safety is achieved, of course… (see photo for actual evidence of said “brick tent,” technically not taken from Lukas’s Final Journey, but as part of the initial road trip to see RUSH that was thwarted x 2)… And those made of dust are honestly kind of mesmerizing to us folks from the Midwest, who don’t experience those sorts of things every day…

Sometimes the storms are the unexpected cancellations (see above), road closures, traffic delays of unknown origin, inaccurate hotel descriptions, and stolen credit cards that lead to a cloud of traveler’s angst, forcing one to make the arduous decision to bag the trip or keep going…(Note: We ALWAYS choose the latter, given my motto, “This is terrible. Keep going.“)

Because…After the storm…Comes the rainbow….

Again, sometimes it is that wonderful prismatic beauty in the sky as a result of beams of sunlight traversing through water droplets in the atmosphere… If one is fortunate enough, you get the rainbow without the rain, having skirted the storm, but even if you get both, atmospheric conditions count on precipitation falling somewhere for that light-refraction hue delight to occur…And the rainbow is the reward…Or as I like to think of it, that whole adage from a song I once heard in a yoga class but have never been able to track down, “You gotta feel the lows to feel the highs.”

Sometimes the “rainbows” are things like flexible Airbnb owners who adjust reservations to accommodate plans changing to maximize family/dog time, surprise mega-Friends-fan-girl moments to sit on THE orange couch (could I BE any more thrilled?!), coupled with unexpected bonus Harry Potter experiences, finding a lone local dining establishment that’s miraculously still open after a looooong day of driving, kind restaurant owners that buy your breakfast, and finding two additional concert tickets adjacent to the originals so that the whole family can enjoy the epic musical adventure…

And then there are the “pots of gold”…

While, unfortunately, they are only metaphorical, these magical happenstance situations are truly what take an ordinary road trip and elevate it to…EXTRAORDINARY.

We were so fortunate to have many “pots of gold” on Lukas’ Final Journey—-those bits of next-level joy that we were NEVER expecting, but transformed what was already an amazing trip, to be beyond our dreams…

Top “pots” include:
— Lukas and Isadora getting their own stars on the Hollywood Walk of Fame
—The look on his face when Lukas got roughly eleventy billion hi-fives, fist bumps, and cheers as he held up as his sign that read “It’s my 18th birthday and my first RUSH concert”
-The out-of-absolutely-nowhere transcendent hummingbird photo bomb as Michael and I posed with our VIP coffee mugs and the red rocks of Sedona behind us
-And finally…An impromptu stop at Del’s in Tucumcari, New Mexico, which we have since discovered is known as the “Heart of the Mother Road”…So, after our bittersweet departure from Sedona, it seemed perfectly planned that we would be pulled to be there…The evening turned from a “rainbow”, of so-grateful-you’re-still-open, to a “pot of gold”, as in, thanks-for-letting-us-close-down-the-place-in-a-major-way as we chatted with the amazing staff and owner, Chase, about our family story, the journey we’ve been on, both these past years, as well as what brought us to land in their fabulous little diner on Route 66…We stayed long past the “Open” sign was no longer illuminated, and eventually left with very full bellies and hearts, plus a pile of souvenirs (including, but not limited to, “Route 66 Monopoly to add to our extensive collection of various forms of the classic game,) so grateful to have ended up there, in the presence of such a fantastic group of humans, who undoubtedly are now officially part of our misfit family and the tale of our life!

We are now home and actually have been for a few days, but been so crazy trying to re-enter life that I have not had time to sit down and finish this post (having fallen asleep from sheer exhaustion many times attempting to do so 🙃)…

I just have to say, that as anticipated and hoped, Lukas’ Final Journey was such an unforgettably fabulous time as a family, and we are all beyond grateful for the outpouring of support and kindness from family, friends and strangers alike…And in our world, ALL of you—-the amazing humans who have been following along, taking the time to learn about our story, and have made any demonstration of generosity and/or positivity—well, you’re stuck with us now! Even though this road trip is done, we hope you’ll remain along for the ride! Thank you, thank you, THANK YOU to everyone— I truly mean it when I say we could NOT have done it without you, and as Lukas would say, STAY MAGICAL!!! 💚💖💫🪄

https://gofund.me/bb41d0787

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55454

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https://www.gofundme.com/f/g8q2u-lukas-final-journey/cl/o?utm_campaign=fp_sharesheet&utm_content=amp20_t1&utm_medium=cus

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