At the top of March, I usually embark on a week off from work, something called Spring Break. For an instructor, it means that I get a break from the hustle and bustle of teaching, and for me, I was reallllly looking forward to sending Rachel off to school and having some down time to myself. I was going to celebrate my brother’s birthday over lunch. I was going to a brunch for special needs moms hosted by a Minnesota Viking in the US Bank Stadium. I was going to… catch up on grading. I was going to take midday naps.
The Thursday before spring break, I was dreaming of all that fun I was going to have, but this persistent cough, runny nose, some sneezing jags, and profound fatigue kept sinking into my body, trapping it from the freedom of fun.
Walking into class at Minneapolis College, and some little voice told me to visit the health center we have for students. I described my symptoms, and the person working at the front desk suggested I take a COVID test, free of charge. They were sitting on a table near the door.
I mean, I was totally convinced I didn’t have it, but I took a few tests, headed up to my office, and just thought I would eliminate that silly notion. Keep in mind, I have not tested positive for COVID this whole time, and neither has Rachel.
I flung my office door open, and suddenly, my heart rate ticked up. Weird. Why am I so nervous? It’s just a stupid test. Whatever.
This was my first home test kit, so I poured over the fine print. I swabbed my nose, dropped the evidence onto the white testing strip. And then I waited.
This reminded me of taking a pregnancy test in April of 2005. That day, Jim went to work at 6 that morning, and I was just weirded out that I hadn’t had my period for quite some time. I went to the drug store and bought a coupla tests, convinced that it..no, BOTH would be negative.
OK, time to pee, Melissa. Easy enough. Put the sample on the white strip. Wait. At this point, I remember just trying to do something normal, like put away laundry or put away dishes. I bet I only put away one, single sock and one, single coffee cup. I was just a little nervous…
Wonder what that pregnancy test says? ….. hooooollllyyy shit!
Positive.
Of course, I didn’t believe it. So I went straight to my clinic, and sure enough, they confirmed it.
I will never forget calling Jim. Nervous yet excited, I fumbled with the phone and snatched his attention away from work. “Honey, I’m pregnant!”
He was thrilled and a little surprised. His line was something like, “What happened? I just went to work this morning, and now you’re pregnant?”
Such a fond memory…
So, back in my office in Minneapolis, I’m hovering over a white piece of plastic, wondering if I was…
Positive.
As in COVID positive. OH NOoooooooo. OH yes. I was positive. I quickly drew up a note to tape to my classroom door, canceling class immediately. I had already donned a mask, not wanting to share this illness, but little did I know that it was COVID.
I headed home, envisioning the big red CANCEL sign for my spring break.
That was Thursday. I did EVERYTHING I could to stay safe from Rachel. Wearing a mask in my own home was bizarre. I even measured six feet so I could take a mask break.
Do you think it worked? I sent her in to school on Monday, thinking I had dodged a bullet, and by that evening, Rachel’s little white plastic strip said…
Positive.
Two Reid girls, STUCK AT HOME, with our red sign above our heads that said CANCELED.
Honestly, I felt trapped. And as I thought more and more, I realized that this was not my first time feeling TRAPPED.
Now here’s the upshot of being canceled and positive for COVID: you can sleep in!! YES.
Rachel and I got so much sleep while in the so-called COVID cave. What a gift that was.
Now in all seriousness, she and I are lucky that our cases were super mild. We counted down the days, and then our lives gradually returned back to routine of work and school.
But that feeling of being trapped? I planted that like a seed in my mind and heart. How can I set us free?
A few weeks went by, and Rachel and I are doing life. Andrew is doing his thing as our PCA extraordinaire.
As we approached the end of March, our cat, Hobbes, started walking very strangely. We knew his hips may have been aging, but suddenly, it looked like his hips were simply wearing out.
On a Friday morning, I watched Hobbes dragging his body and legs behind, barely able to stand. I scooped him up, put him on my lap, and then I sent a text to Emily C, normally a fan of dogs and not cats, but somehow Hobbes captured her heart.
I gave her the lowdown, indicating that the end may be near for Hobbes. I thought she was at work. Much to my surprise, she appeared at my front window, holding her copy of my house key, as if to say, “don’t get up. I’ll let myself in.”
We discussed what to do, and later that morning, I called our local vet. Midafternoon, they welcomed us back and gave Hobbes a simple examination.
I have to share two things from this visit:
The vet saw Hobbes last year around January. This was the visit where he said, “that’s an awfully spry cat for his age.” When my cat heard that, he strutted around like he owned the place.
A year or so later, the doctor told us that he sees thousands of cats, but somehow, Hobbes left an impression on him. He expressed his love for our cat and for me for caring so much for this aging cat. A sweet moment to hear from a man whose life is dedicated to animals.
Emily sat with me and Hobbes, taking turns holding him. I brought him in, knowing this could be the last day of his life. Emily knew that too, but to watch her shed loving tears for her “buddy” was an act of love to me. And it was a first. I’d never seen her cry. I had always thought she was too tough to do so! Not so.
The vet completed his exam, turned to us, and offered his thoughts. On the one hand, he completely understood and witnessed that Hobbes was an aging cat of 20-plus years. Putting him to sleep was an understandable choice we could make. On the other hand, the vet suggested a simple medicine that might extend his life and allow for him to hang out a little longer….
I chose the medicine. It somehow felt right. He offered no guarantees, and the cost of taking this choice didn’t seem too expensive. His vet assistant administered the first part of the drug, gingerly placed him into the pet cage, and off we went home.
Well, I wish I could tell you he got better.
Around 5 p.m., after spending time on my bed, stroking his body, thanking him for being so right for our family, I laid him on a make shift bed in my closet. I knew that cats like to pass away in quiet places, alone. And somehow, as he just flopped down, not fighting me or readjusting his position, I knew the end was near.
Rachel and I left him alone and watched our fave shows. I finally put R to bed, and then I noticed that Hobbes was gone.
We had him cremated and ordered two sets of paw prints.
I tried to convince myself that this was “just a cat.” Silly Melissa. He was every bit part of our household as well as our hearts. Hobbes fell into everyday habits that I took for granted. Suddenly, no one is on my couch with me at 4 a.m. as I drink my first cup of coffee. No one is in my bed, sleeping near me, watching over me.
I hold my glass up for the good boy Hobbes.
(Confession: I don’t miss litter box duty. Just sayin’.)
A few weeks ago, I had to bring in my Honda for maintenance on the special chair that comes out of the van for Rachel. *Someone* transfers her into that chair, and with a push of a button, she is positioned back into the van. We had added a Hoyer lift for the van during Jim’s illness, thinking that would also help. I couldn’t lift her after her spine was fused.
So, while inside the company, MobilityWorks, I struck up a conversation with Mike Norman, a longtime employee and salesperson.
I was asking if they had any Honda Odysseys outfitted with a ramp. Now somewhere in this conversation, he made it clear that inventory was very scarce since the pandemic. But he had one, and he showed me how the lift system worked on this 2023 model.
I was smitten. It was a pretty sexy deal!
I won’t bore you with the details…but let’s speed this up to this week: On Wednesday, I picked up my Mom, took her home with me in Mound. Andrew was waiting for his shift to start at our house, and I changed the routine with a trip to Roseville to test drive a 2020 model. Still a Honda Odyssey, and black like the one I had already.
Today, I inked the deal to purchase it. It is a beaut, as my father would say. I am very happy with the purchase, the price, and the prospect of setting ourselves free with this vehicle.
After Rachel got back from school, the three of us decided to go on a small adventure: We wheeled Rachel into the van, with relative ease and a smidge of troubleshooting. We went to Walgreens, then Scheel’s, a sporting goods store in Eden Prairie Mall, and then we grabbed dinner at Chick-fil-A. I knew Andrew liked these places, and I knew Rachel was ready to “go places.”
As I looked at the throngs of people at Scheels, I realized that this was a normal Friday. Busy? No. Just people doing life at the end of the week. It’s time for me to get back into that pool of experiences. Of life.
I’ll close here. I am moonstruck with this car, and I am dreaming of a life set free in it.
Previously on the Bus of Hope…Rachel Reid was smack dab in the middle of her Boot Camp in October of 2023. Did she make strides? What was the result of a week-long intense therapy of PT and OT?
And before that, Melissa shared that sometimes life tosses situations that are full of love and light, and sometimes it’s all bullshit. And SOMETIMES, it’s both. From October to now, what has life been like for the Bus of Hope?
Let’s check in and find out.
When I lost Jim, I lost a lifeline. Almost like a set of checks and balances. I still have his phone number programmed in mine. Not sure I will get rid of it, honestly. It’s funny, this grief thing. I long to text him and say something so mundane, like, “in my car, headed home.” Better yet, I want HIM to text me after a shift at Costco and say, “on my way.”
You know what I really want? I want to know – really be assured – that Jim made it to heaven. We talked That Place often. I know that he had a LOT of questions for God when he got there.
Lately, I have been looking for a sign that he made it. And just like that text, telling me he is on his way, I want to be able to breathe easy that he’s there. I can hear him, using that sexy voice he had, stating his name. “Hi, my name is James Reid, and I’m checking in to Heaven.” Will I ever get that reassurance, or is that what faith is all about?
* * *
Sometime during the fall, I realized that I could really use some help with Rachel. Friends and family kept nudging me to get relief. So, I built into my county waiver a budget for a PCA, or, what Hennepin County calls a Support Worker. I wondered how this might help me. And I really wondered WHO could help us.
All throughout Jim’s illness, caring for two people felt as though I was swinging two bats. I was so focused on being super-human and denying that I needed any form of assistance. I was toughing it out. But after barely surviving the summer with a deep roster of volunteers, I decided to call for a reliever where Rachel was concerned.
I approached Emily Colestock and asked her what she thought. Somehow, our conversations landed on one “major” dude: her son, Andrew. He was between jobs at the time, and so the opportunity existed.
After we finished a great deal of paperwork, Andrew was officially hired on to be Rachel’s support worker.
If you have never met Andrew, you will have to rely on my descriptions as he is camera shy for social media. That’s ok. It just ups the challenge for me as a writer. Let me back up a little. The Reid family and the Colestock family have been connected since our kids were in preschool in 2008. I met Mom and son first, and I loved them both immediately. It was clear that their bond was grounded in love, fresh air, God, hope, and a lifelong affinity for baseball.
Andrew is a lot of things: Funny, storyteller, inquisitive, caring, honest, full of faith and hope, wicked smart, talkative, hard-working, profoundly down to earth, and very, very, very fond of Rachel, in the most sweet, kind, and friendly way.
Andrew is also a bonus son to me. Andrew is a peer to me. Andrew is a sign of good things to come, in more ways than one.
Need a visual? OK, here it is:
Maybe I’m wrong, but Andrew possesses an “old soul.” Picture him as a 2024 version of Jimmie Stewart.
What follows are scenes from our home turf, with our star “relief pitcher” for Team BOH.
* * *
Andrew joins us on Tuesdays, Thursdays, Fridays, and Saturdays, clocking in 20 hours a week. NOTE: This allows me a newfound freedom I haven’t felt in quite a while. More on this in a bit.
On school days, he shows up early, and the two of us chat about anything and everything under the sun. We cover topics like college life, sports, politics, and history. We glance through the big picture window to keep an eye out for Rachel.
Once the yellow vehicle glides onto my driveway, we greet Rachel as she comes off the bus. After we are settled inside, we strategize about what we want to accomplish, and then Andrew’s shift is underway.
Baseball is often the backdrop, offering chatter and color to this developing picture of hard work and budding friendship.
I cannot tell you where or how he discovered it, but somehow, through Apple TV, he found something called “Great Games.” It is a wealth of baseball matchups, often featuring the World Series. The offerings go so far back, the earliest are in black and white. These games grace Jim’s big screen TV, and Rachel and Andrew will watch the game while tossing a whiffle ball and standing super tall.
“Aw, come on, blue!” Andrew shouts at the TV. Through him, I’ve learned that “blue” is another way of referring to the “umpire.” I love baseball, and so does Andrew. Through his presence on the Bus, I’m getting a sense of just how deep and wide his appreciation for the pastime is.
Recently he brought up a Detroit Tigers vs Washington Nationals matchup from May 11, 2016. The score is 1-0, Nats lead. Andrew helps Rachel practice the names of each player as they come up to bat. After that, it’s a quick lesson in numbers and math.
“James…” said Andrew, looking to Rachel to pronounce it.
“James,” Rachel parrots.
“McCann,” Andrew finishes the name lesson.
A pause, but then, “Mc…Cann.”
“Good job! Now what’s the score?”
Another pause, as her eyes scan the screen for the numbers: “1-0!”
“That’s right! Alright Rachel, what is the pitcher going to do? Fastball or offspeed?”
“Fastball!”
“Okay, let’s see if you’re right.” The pitcher winds up and sends a fastball screaming down the strike zone. “Well done, Miss Rachel. High five.”
On Tuesday, Andrew brought over Catan, and for at least 3 hours, they played a dice game that uses imaginative strategies. When I walked in from a belated birthday dinner with Emily, Rachel’s cheeks sat high upon her face, beaming out with joy.
What else does Andrew do, exactly? Wellllll, let me show you:
Standing tall
As part of the home program from Gillette after Boot Camp, we all agreed that getting Rachel into her stander was important to get her legs and core strong.
About two weeks post-discharge, I attempted to get Rachel into that stander. I could not do it safely, and it required tools and know how because we were missing parts.
Enter Andrew: he’s an Everyman and a Handyman. He can see how something is put together. I watched him figure out a workaround with the help of Jim’s tools he left behind in the tall red cabinet.
On more than one occasion, he will be in the middle of a MacGyver moment, trying to piece together how to solve a problem. He will excuse himself, disappear to the back of the garage, looking for a solution. The house is quiet with anticipation. In due time, Andrew emerges in the door way, grinning from ear to ear.
“Hey look what I found? This just might work! Score one for Jim Reid!”
Like Jim himself, Andrew is correct and solves an issue with something I didn’t even know we had.
He has also quickly learned how to use the sling, the ceiling lift, as well as our Hoyer lift with acute care.
By now, he knows that projects, games, and whiffle ball catch allow stander time to zoom by with minimal kvetching.
When she DOES complain, he allows for breaks and lets her down from standing. But not for long. Thanks to Andrew, Rachel averages about 2-2.5 hours, gaining strength in her legs and core.
Mat time
One of the goals we set post-Boot Camp was to get her stretching on a mat. I scrolled through the internet, landing on Amazon, of course. Andrew happened to be hanging out at the house, and I turned to him for help to select a good mat for Rachel. He helped with measurements and gave suggestions on the shape and size of said mat.
Within a week, the mat arrived. Andrew unwrapped the box and is now the director of the Rachel’s stretching program on it. Leg presses are her favorite: she is on her back, as she puts her feet onto Andrew’s chest and shoves him away.
Her strength can surprise, and Andrew widens her range of power with every encouraging phrase. I have also heard Andrew say that they will pretend to slide into a base, with an outstretched arm.
Projects
Dig this list: Andrew has replaced light bulbs, hung Christmas lights, cleaned kitchen appliances, installed a brand-new kitchen faucet, taken out the trash, cleaned dishes…He often will ask if there’s anything he can do before he closes out his shift.
One of the most endearing projects that Andrew and Rachel completed took place just before Christmas…
He suggested to Rachel that they complete a letter-writing campaign whereby they wrote to baseball teams. Andrew assembled a template of sorts for the letter. They made key changes so that each team received a note from Rachel, via her caretaker, Andrew.
They used my laptop to print letters to ALL 30 MLB teams. Rachel had to sign each letter, at the insistence of her support worker. Andrew paid for the stamps, and, like a thief in the night, Emily collected all the letters on a December evening, just before Christmas, and dropped them into the mailbox.
Time passed, and during the holidays, I made sure that Andrew had a special gift: a large box of baseball cards: he and my 10-year-old nephew, Dominic, received the same present. The excitement of what’s inside seemed to serve as an equalizer of age and status. Because with baseball cards, we are all fans in the end.
Sometime in January, Rachel received her first response from one of the 30 teams.
Can you guess which team it was?
The Boston Red Sox! A package of pretty postcards, a Christmas Card with a Red Sox emblem, and…a small baggie of dirt from Fenway Park!
Not to be outdone, those “Damn” Yankees pitched a compelling argument that they can’t be hated forever. They sent power player Aaron Judge’s tank-top jersey with the number 99 prominently displayed on the back. Rachel wore it to school one day, and I’m certain it turned some heads!
If you are keeping stats on players, please place a “W” next to Andrew’s name. His love of the game and his imagination brought us a spinning beauty of a moment. Rachel and I shall never forget it. Place another “W” next to Jim Reid for making sure his hometown did us all proud.
Short order cook Andrew has a love for cooking, baking, and grilling. He can sauté or grill a mean steak, assemble taco meat for the meal, bake protein banana bread, whip up homemade pasta, and presents his homemade French fries as always better than something found in a store. All of this is done with Rachel as part of the process.
“I’ll take Sports History for $100, Ken!” You know, Andrew has a really high RBI – Really Bloody Intelligent. As I marvel at his vast brainpower, it came as no surprise that he was good at the game show Jeopardy! His enjoyment has now flowed right into Rachel. She has even gotten a few answers correct.
When the show is on, Rachel and Andrew sit close to each other, reading the clues, and high-fiving or fist-bumping with each correct response. I enjoy watching that more than the show itself.
* * *
Last fall, after we got home from Boot Camp, I came to the conclusion that it was not a whiz bang miracle of any sort. And honestly, I didn’t really think that would happen. So I choose to frame it this way: her intense therapy during a week’s stay was a reset, not a set-back.
The hope is that we go back to Gillette for another Boot Camp at the bottom of March, during Rachel’s Spring Break. And all of that depends on how much she improves between then and now.
If she really has made strides, we will all have to stand and applaud Andrew Colestock for his relief driving. Can you see him now, emerging from the dugout, turning around to face the Bus of Hope, tipping his hat in gratitude? Take a bow, Mr. Colestock.
Andrew forces me to look into the future, and I confess I don’t want to think about life without him. With any good player, especially with his array of talents, sometimes the team has to trade him away. In this case, I’ll be sending him off to a traditional college setting, and it just so happens that one school he is very interested in is my alma mater, Bemidji State University. Look out, BSU.
But that means that I will have to find his replacement. Good God, that person has huge shoes to fill! And hearts too. Rachel and Andrew are a sight to see.
As I drive this Bus of Hope, I hope to inspire more inclusion in every facet of life, from bus stop to truck stop, from school yards and back yards, from church rows to CEOs.
If I have learned anything from this current chapter of my life, it’s this: every Rachel needs an Andrew, and every Andrew needs a Rachel. That kind of interdependence is fueled by these kind partnerships, in which each player taps into their better angels inside, doing their best work for the other.
Rachel and Andrew are living proof that this kind of teamwork can happen. I am a loving witness.
With my hands firmly at 10 and 2, this is Melissa Reid, signing off for Team BOH.
Rachel is sitting in front of a basketball hoop that is adjustable with a crank that raises or lowers the hoop. This is new to Gillette’s playground, attached to their desperately needed parking ramp.
Rachel was so thrilled to see ASL displayed in the new playground!
Dear BOH, At 5:30 this morning, Rachel kept saying that classic line from Jodie Foster’s movie, Contact: “I’m ready to go!”
I told her it was too early, gave her the IPAD, and went back to sleep!
Her day finally got rolling around 9 a.m. First up? School for 60 minutes! She once again flashed her independence as she was unbothered by leaving my side.
A gentleman named Max Cmo arrived to usher into his classroom, where they worked on counting, sight words, and drawing (fine motor skills, ya know!). He said that her attitude was good, but her concentration kinda comes and goes. Par for the course given her excitement.
Mr. Max hails from Laos. He is soft-spoken, sincere, and gestures in circles that always land on his heart. He showed care for Rachel as he outlined what they did for that hour. Rachel beamed as he chatted with me about their session.
Next up was 30 minutes of OT with Jacob Sunder, a new addition to the team given his youthful looks but acts and carries himself with the ease, poise, and confidence of a consummate professional. (When I asked Rachel what she thought of him, a grin spread across her face as she said, “kind, a hottie, and cool.” 🙂 )
Jacob talked with me about a new hand splint. He talked about small progress already from yesterday to today as she played UNO while sitting unassisted. In a co-treat with PT, Rachel managed to sit up longer TODAY without help. This is a building block to being able to walk. Think about it: when you wake up in your bed, what is the first thing you do before getting up? Swing your legs out of bed and sit up, right?
He and I also briefly talked about commodes and how best to select one for not only our home but of course Rachel’s needs. The one we currently have is old, so I think it’s time to replace it. Potty training was one of the goals I listed for Boot Camp, and this team is listening.
Ben Platt could play the role of Dr. Walters, but the stache is better on Ben…
Shortly after meeting with Max Cmo, Dr Walters came in to brief me on Rachel and her team’s views going forward. To describe Dr. Walters, you have to picture a Doppleganger of Ben Platt, except Dr. Walter’s mustache is completely untamed and unruly. Other than that, he’s hot-stuff and looks like he’s 12! No, make that ten. Maybe the hottest thing about him is that he’s a dad already and obviously cares about kids.
Anyway, Dr. Walters laid out some of the take-aways that the team discussed as well as her labs from this morning… Her blood work was good, solid. For now, the team wants to put forth a large effort to achieve as much as she can between now and next Monday, possibly Tuesday. The doctor suggested that we don’t want Rachel to miss much school.
He told me that the therapists will assemble a good home program and look at adding outpatient therapies. I suggested – or maybe he did? – that we return to another boot camp next March during spring break. We both are on the same page there.
Of course, he left the door open to changes for THIS boot camp, but that seating eval is crucial. If I haven’t told the BOH yet, we are hoping to replace the power chair she has with one that has a standing feature. This means that it is a power chair that also allows for the user to push a button and go from sitting to standing. Pretty cool, right?
Those seating evals are hotly pursued and book weeks out. I managed to snag an earlier one after booking on in November. How does that song go? Not gonna throw away my shot!
Next up was Nancy Wagner, the psychologist for the rehab unit. I wish I was there for that session. But I was not, and perhaps that is for the better. Rachel needs to work on her grief, her growing mind and body, and her goals for the future. Nancy is the right person for this slice of her life, just as she was when we met her back in 2011.
I will never forget witnessing the beauty of Nancy’s influence and connection: Rachel was profoundly sad one day, and her language had not come back online yet. So Nancy pulled all the pieces together and discussed all the reasons why Rachel might be sad. As she spoke, Rachel never took her eyes off her, listening to how she might miss her friends, the activities she did, and perhaps the cat she left behind at home. Rachel’s tears slid down her face, and Nancy’s kind, sweet, and compassionate voice threaded all the pieces of Rachel’s emotions into a garment of good.
I can only imagine the joys Nancy felt with seeing her today, hearing more words come from Rachel herself.
She had a session with a music therapist and a session with therapeutic rec. Sounds like music was her favorite over the other, and I’m not surprised by that.
PT Amy Schulz stopped by later in the afternoon, post Boot Camp. She shared her thoughts about the sitting up piece, the seating eval that is on the books for next week, and discussed further that possibility of a home program and/or outpatient treatment. Amy has never worked with Rachel directly, but she has always kept a keen eye on Rachel over the years while using the Lokomat especially. Just like everyone else, she exudes a caring spirit for our Fighter.
At around 3:30, Rachel was back in her room. I was trying to work, yet I felt restless not knowing what to do with myself!
She entered the room saying, “I’m bored! I’m bored.” So we took a walk and looked at the new playground. Pictured below? It’s a swing! Caretakers lock the wheels on the chair and push the swing. Well played, Gillette.
Tomorrow, she starts at 8 a.m.! I will likely lend a hand, helping the nurses get her ready for the day. In closing, I just want to share that I am seeing a fierce independence emerge. Once she heads off to Boot Camp, I will leave Gillette and take some time for myself, both for my job and for me.
Well, what more can I say but … Hands at ten and two, Melissa
Dear BOH, This update will contain references to death and dying, profanity, and raw truths. If you’re not up to such heaviness, my feelings aren’t hurt if you skip it. I will attempt humor where I see fit. All of this material has been ruminating for some time… Title help came from Emily Anttila. (Thanks EA!)
Read it and weep.
P.S. I will present this piece of writing using a format called Grammar B. It comes from Winston Weathers, who argued that a “looser, freer, more poetic kind of writing exists.” So, I will use it here. Any student of mine can vouch for it too.
And so we begin….
Toward the end of April, Emily Anttila drove Jim to his next appointment. She had become one of our trusty drivers, but she often took Jim to the heavy-hitting check-ins with cancer docs as they poured over PETSCANs and bloodwork. She blocked off times from work to assist us, and her boss and co-workers fully supported her act of love. In retrospect, I find this incredible.
I seem to remember that Rachel got home from school that afternoon, and Jim and Emily got back shortly after. Maybe Emily Colestock was there too…Evelyn was there, and maybe Dylan as well? By this point, Jim walked slowly, gingerly. All throughout the month of April, his body was fighting something, for his bloodwork always gave us an unsolvable puzzle. While I cannot remember the specific medical details, what I do recall are Jim’s zapped energy levels, his fading appetite, and his dimly lit eyes.
Emily A looked at Rachel, and then she looked at me. She tried to suggest that we remove Rachel from the room so the adults could talk. For some reason, I insisted that Rachel stay to hear what she had to say. And I can recall quite clearly Rachel herself didn’t want to be carted away.
“Whatever you have to say, Rachel should hear it.”
Emily A flinched a little, all while trying to remain calm, avoiding alarm. Jim found a spot next to me on the couch, Emily climbed into Jim’s EZ chair, Rachel took her place in “the circle,” and then we listened to Emily.
It took a moment for her to find the words. She started with a brief mention of bloodwork and what the scans revealed. I could tell by her tone it wasn’t good. Finally, she shrugged her shoulders and said, “fourth months? Maybe?”
Somehow, I tried to see how four months would still be great. We could be in the new house by then. We could maybe sneak in a trip to Boston somehow. We could still have some fun. Four months is a lot of time, right?
Back in June of 2022, the first month of this cancer journey, we listened to Jim’s radiologist suggest that he might have four years left. I can remember clearly latching on to that thought tightly. Four YEARS seemed like a fucking lifetime! Oh, the places we INDEED could go. And now, here we were, ten months later, and we’re being told “four months, maybe?”
Within days, we were looking at brochures for hospice care.
That’s some bullshit, alright.
On a Thursday night, Julie Anderson-Smith came by to keep Rachel company and brought us a meal. By this point, Jim’s stability was rocky at best. By this point, I was helping him use the toilet, get dressed, and shower. That night, Jim had managed to get into his EZ chair and try to participate in the conversation of the evening. He’d smile a little while adjusting a blanket over his disappearing body.
Finally, he said he wanted to go to bed.
His chair was maybe 25 to 30 feet from our bed. A healthy Jim could walk from point A to point B in 8 to 9 steps. One detour to the bathroom, and then a sharp left to our bedroom. What might that take, 2 minutes, 3 tops?
He inched his butt to the edge of the EZ chair, getting ready to stand. I sensed a struggle about to begin. I suggested for the umpteenth time that he use his walker. My request fell on an empty mind. Instead, he struggled but managed to stand up. Once upright, everything stopped. It was as if his brain and his body separated, stopping Jim in his tracks. His face bore a blank stare. He forgot what to do next.
I was so afraid he would fall. So, I stepped in front of him, grabbed his hands and put them on my shoulders. I held him however I could, and then I got him to take plodding steps from his beloved chair to our bed. I summoned the physical therapists’ lead and lingo as they might speak to Rachel.
“Okay, Jim,” tapping on his right thigh, “I need you to get that leg to take a step. Can you do that for me?”
His brain must have sent a signal – a faint, but strong enough one – to that leg, for it shuffled forward.
“OK, good. Now the next leg. Come on, up you go. You can do it.”
Jim didn’t speak: he just looked down and willed his feet to move.
“Now look at me. Don’t look down. You’ll do better by looking at me. Keep going, Jim.”
It took 20 minutes to go from point A to point B. When we finally made it a foot away from our bed, I had to figure out how to get him into it. I didn’t really think hard, so I instinctively did what I thought best: I slow-motion body slammed him into bed. I stood in front of Jim, and the bed was behind me, so I grabbed him by the waist and slowly twisted my body and guided his frame into the bed.
The next day, Jim basically slept all day on the grey couch. It was the kind of sleep, or so I thought, that one might easily slip away. I tried to do normal stuff while he rested, but I kept checking his breathing. Dishes – check breathing – toss in laundry – check breathing – grade some essays – check breathing. Earlier that morning, after getting Rachel onto the bus, I crawled into bed with Jim. He patted my arm and held my hand. We spooned and felt the warmth of togetherness.
By this time, the kindly hospice nurse Jamie had informed us of the phrase “actively dying.” I cannot think of a more haunting yet honest phrase than “actively dying.” Really? Wow.
That night, not knowing what was going to happen, nor how soon, Seth and Dylan, along with Emily A spent the night with us. Just in case.
The next morning, Emily walked in to our bedroom, pulled up Spotify, and rolled out the Steely Dan tunes on her phone. Jim tried to sit up and smile for her, knowing she was the nurse of the moment. He always loved her. Thought she was funny, down to earth. Sometimes he downright flirted with her!
She sort of said something like hey, relax, we’re here for you. I think he just got comfortable and went to sleep.
Right about noon, it happened. I was checking on Jim and all of a sudden, a huge grand mal seizure rocked his body something fierce. His arm was bent and flapping, his elbow was jabbing his face jerkily. His face went sideways, while his eyes rapidly blinked and flickered fast.
Oh shit!
I ran to the boys and Emily: “He’s having a seizure!”
It lasted for two and a half hours. We got a young hospice nurse to the house quickly. She could not figure out how to stop the seizure.
“Well, we could take him to Abbott and get it to stop there…”
Oh my God, NO.
I told this nurse that it was his wish to die at home. He and I wrote that in his health directive. I believe I used the phrase “there’s no fucking way we’re taking him to the hospital. Make this seizure stop here.”
By 3 p.m., we started a regimen of medication that kept pain at bay and his body free of seizures.
And that was good.
But that was the last time we saw or sensed The Real Jim. That Jim died with that seizure.
Bullshit, indeed.
From that Saturday afternoon through Tuesday night, we held a vigil near Jim. We all took turns sitting with him. We drank and clinked glasses in the evening. We told stories of Jim. We spoke of things we loved about him. We aired our grievances too. We were honest about what we felt.
But we all drew closer too, and that was love in a way I never imagined it to be.
I gotta tell you this: those days from Big Bad Seizure to his passing stretched out to what felt like three years not days. Watching his breathing patterns change was a haunting, peculiar sight. What’s worse? Every once in a while, Jim would cough, and it sounded like the mournful cry of an old man. His face also sometimes winced, and his eyebrows arched like a child sore afraid.
On Tuesday night, after I put laundry away, I sat with Jim. By now his breathing looked jagged like a fish out of water. His eyes were open, but he wasn’t “seeing” anything. I just thought it was a fitting metaphor for a man who was honest to a fault: My eyes are open, and I know what I face.
He died shortly after 6 p.m.
I called the funeral home, and they sent out the coroner.
I emailed Rachel’s teacher, and he got in his car and came out to the house.
What happens next is a beautiful scene:
Look, to be honest, I was really hoping that Jim would die during the school day, and then I could just tell Rachel her daddy passed away. But no. I did NOT want to have her watch her dad’s body go into a bag. I did not want her to hear the zipper, enclosing the man she called “daddy.”
Enter Turnar Kist, her spec ed teacher. He walked in, hugged me, offering condolences. He found our cat, grabbed him, and found Rachel, who we had sequestered in her room with Evelyn and Emily A.
Turnar cared for Rachel by diverting her attention to the cat and his silly. Peals of laughter emanated from R’s room while the coroner wheeled the gurney to the living room. Seth and Dylan lifted Jim’s body out of our bed and onto the gurney.
Ladies and gentleman, that is love and bullshit, right there.
On a bright afternoon against a cloudless blue sky, we buried Jim at Prairie Oaks Memorial Eco Gardens in Inver Grove Heights. Pastor Loren and Pastor Derek presided, offering prayers and an opening to all to share thoughts about Jim. My dear, sweet brother, Chris, starts the ceremony off with “Sweet Baby James” by James Taylor. After we lower Jim into the ground, with roses atop his simple, wooden coffin, Chris closed the ceremony with “You’ve Got a Friend.”
Every single one of us sang and cried in tandem.
Now this update is already full, but the summer was mighty full too.
Let’s start with June: I signed the papers to purchase this home I’m in right now. This home. The one with one-level. The one with a garage that’s got space for four Ford F-150’s deep. The one with gorgeous wood floors. The one with a long, stretched out yard and an ugly but beautiful shed in back. The one with TWO bathrooms and a finished basement…perfect for special out of town cousins who stayed here while my niece has her bat mitzvah. The one that may or may not house family for a sleepover from Christmas Eve to Christmas morning?
Yes, this house I’m in right now.
I sometimes ask myself, Do I really live here? Is this really my house? That’s not possible!
It’s a terrific home, and I’m very happy. But honest-to-fucking-God, why couldn’t Jim get on board with moving YEARS ago? He just always refused me when I would suggest moving because it was no longer conducive to Rachel’s needs. I can’t help thinking that maybe Jim could have stayed alive LONGER if we had moved? But then again, maybe this house allows ME to live longer? I have a lot of unanswered questions here. And I also have no desire to forgive him for his reluctance on moving. But I know I will let this go. Forgiveness like this will be more for me than him.
Anyway, I digress.
On the day we move out of the old house into the new, the Hoyer lift for Rachel I bought – no, Melissa, the BOH bought it for you! – arrives at the new home. It’s also terrific, but the only thing that is bad is that it won’t get her into bathroom to take a tubby.
SHIT. I can hear Jim suggest that I didn’t think that through very well. I’d have to agree. I just thought it would just kinda work out. UGH. What do I do now?
Enter Amazon: I found a $10 kiddie pool and get it shipped on the stat. For the last five months, I have been tossing down towels onto the kitchen floor, putting the pool on top, placing Rachel’s bath chair inside the pool, Hoyer-lifing Rachel into the chair, and using this BIG water pitcher to bathe R in the kitchen. So. Much. Fun. Honestly, though, I think it’s pretty ingenious. And it works, in a MacGyver kinda way.
Just wait until I update you on the bathroom that will be…But first I have to update you on that old house and the force of not good but greatness, even with delays.
Bullshit alert #325: When Jim was alive, he often referred to our house as a …shit pit. And in some ways, yes, it was very cluttered with STUFF, it was beat up from Rachel’s equipment, and it was in dire need of updating. Like, now I realize that when you own a home, you have to do upkeep and TAKE CARE OF IT. I didn’t know this, and I’ll accept my own responsibility in this. But…but…but.?
A probably-partial-but-you-get-the-idea list of how we created a castle out of a shit pit:
Volunteers painted the rooms. MANY volunteers. SOME REPEATEDLY.
A “bonus grand” volunteered to empty the gutters.
A very special volunteer put a drop ceiling into the basement. (Special people paid for the materials and helped pay for the electrician for lights.)
Special people redesign, remodel, and remake the basement from a woodshop to FINISHED SPACE, like to the point that we could ask for more $ to sell it.
Green-thumbed volunteers weed and plant hostas. Melissa, you planted some of those hostas and laid down mulch.
Hired help buff pet stains out of the floor, replaster gaps in the walls from the ceiling lift, recaulk the tub because I suck at caulking, so I learned…
Hired help stage the house in a glorious way. (I doubted the value of staging. I was wrong to question it. SO WRONG.)
After several days of working, on her first day off in a while, a very special volunteer mows the lawn right before the house goes live on the market. That same special individual learns how to replace an electrical socket with the help of YouTube University.
One volunteer keeps checking in with me, reviewing what needs to be done. This same person helps me clean Rachel’s windows, the ones too high up to reach with a ladder. He figures out a way to TAKE THE WINDOWS OUT and we wash them AND PUT THEM BACK IN. This same person makes trip after trip, from old house to new with stuff in the garage that never quite made it over. Accompanying him was a former student of mine, doing some heavy lifting.
I’m sure there are other things that we (the ROYAL WE) did. But I cannot remember them now.
What’s the point you’re making, Melissa? It’s almost one in the morning, and you really shouldgo to bed. But it’s Sunday, and I can sleep in! But you have to pack for Boot Camp and you should clean your house and finish laundry before Boot Camp. You sound like your mother. Maybe your mother is right, like almost always? I’m on a roll with this update, and I’ll sleep soon enough.
What’s Boot Camp, you ask? I promise to tell you soon.
Let me finish the house story.
So, I have been paying three mortgages since August: The original one for Wilshire, the bridge loan which allowed Rachel and me to move out of the old into the new, and then the new mortgage for this house.
Finally, after some delays, the Wilshire property is on sale by 9.6.2023. I was ready to be in this mode of selling for a while. And I knew the headwinds that I faced with rising interest rates, but I always argued that the low inventory of houses available might work in my favor.
Get to the point, Melissa…
In mid-September, the BOH and I sold the Wilshire home to a 22-year-old man; it is his starter home, and so it won’t be a tear down or a flip. When retrieving the buyer’s check from the broker, I bumped into Jackson, the guy who now owns my old house. The thing I will never forget is his smile. It was pure joy. I shook his hand and congratulated him. His mom was beaming too, for he would now move out of the house and into his own. Ha.
The supposed “shit pit” makes a young man smile? Whodathunkit? And now I’m down to one mortgage not three.
Yep, I’m lovin’ it.
OK, it is getting late, and I should think about at least stopping for the night, but I should just grab a snack and continue at least highlighting what BOOT CAMP is.
BRB.
What is “boot camp”? About two years ago, after surviving the 2021 summer of Rachel’s full spinal fusion, I started asking for an intense period of therapy for Rachel. At the time of my first request, my hope was to get her to help with transfers as I could NOT do them after her back was fused. Then, as time passed, and cancer took Jim, I figured it was time to revisit getting Rachel back into physical therapy.
Time for Boot Camp.
On Monday, October 16, she and I will head to Gillette. We will stay at the rehab unit on the fourth floor, and lemme tell ya, that’s full circle. She started this journey, first at Children’s Hospital in St. Paul, then Gillette back in 2011. When we were at Gillette, we stayed at the rehab unit.
Gillette is also where the Bus of Hope was born.
I’ve set 3-4 goals: they are getting Rachel to do sit to stands, transfers, potty training, and independent walking, even if with a walker.
Dr. Gormley told me that insurance will cover one week, but no more than two. We are slated for one, but if she really knocks it out of the park, and therapists see that she will benefit with one more week, we’ll stay for another.
Pray and hope for really good things to come out of this. I really need Rachel to be a little easier to take care of. This Boot Camp might get us there.
Now here’s a #love&bs deal for you: ever since Rachel got a hold of his concept of Boot Camp, that is ALL WE TALK ABOUT! I mean we are talking every day, every morning, every evening. UGH. I really hope this means that she is serious and wants to improve her own outcome.
When we get back from boot camp, the last step for our current bathroom/bedroom remodel will be complete. Let me fill you in: about a month or so ago, Access Lifts installed a new ceiling lift into Rachel’s bedroom. A few weeks later, we put the old one from the old house into the bathroom. And then, Monday, Whole Builders will widen the doorways to the bath and bedroom. Once that happens, we can retire the $10 kiddie pool. I can’t wait for tubbies in the bathroom where we belong!
Seriously, Melissa. Close up the laptop, and put your ass to bed.
I will listen to my inner Mom and do just that. GN.
I’m back, and much too early. Rachel wants to start packing, but I am not ready.
I TOLD you to go to bed earlier!
You sound like Jim Reid!
Whatever.
What does our future hold? Will I find love again? Where will Rachel and I go? Do? Become? The other day, I realized that Rachel has less than two years of high school left. A mild panic set in. But then I remembered that she will have three years of transition Plus, an extension of her educational journey that gets her ready for work and the community. But my panic persists: How am I going to do my job with Rachel in my home? This puts me in a cold sweat, to be honest.
Tell the BOH about your plans that you have been sharing, especially with the social worker…
Oh yeah, that’s right. In the new year for my county grant, the one that allows for bathroom remodels and paid parent, I hope to hire people to take care of Rachel while I step away for a break. I might run errands, sit in a coffee shop, or take myself to the movies. I need to get away…(Isn’t that a song?)
I am prepping a list of people I know who could fill that role. I am also a member of a Minnesota nanny group on Facebook. The social worker and I had a productive conversation about self-care for me. And if you, gentle reader, want to be on that rotating list, please let me know.
Melissa, you will date again.
Nope, I just can’t see it. I’m old at 53. Who wants to date a woman whose she-ro is Barbara Walters, who shoots from the hip, who lacks filter at times, and who doesn’t feel all that good looking. Who still has a voice inside who calls her “moron,” or “ugly and E.T.” The latter was from a dark teenage period spent in another town. I’ll tell that story another day…
Lots of fear and feeling the unknown about dating, I gotta say.
But right now, Cyndi Lauper sings it best: I just wanna have fun. I want someone to go for walks and help me by pushing Rachel too. I want someone to replace a funk in my spirit with a drive in the rolling country roads while sipping Caribou. I would love to see my baby brother perform with a sitter at home and a date on my arm. I want someone to make the coffee so I don’t have to.
Whoa, whoa, whoa, Melissa. Doesn’t coffee mean they are…living here? Spending the night at least?
Too soon?
Careful, Melissa. You have mastered the coffee making for the last two years, right? It only takes you about 4 minutes. You don’t need a guy to make you coffee. Or go for a walk. Or grab Caribou. Or see your bro perform. Grow up. Get brave.
But, but, but coffee tastes better when someone else makes it…Well, it does!
OK, I’ll dial it back. The point here is I seek joy. In fact, family friend Di Kistler gave me a book which instructs me on how to form a routine of joy, and I intend to do just that. (Before I date!) It’s called The Four Habits of Joy-Filled People, written by Marcus Warner and Chris Coursey. In their introduction,” the writers suggest that, “what we are learning from neuroscience is that joy is not a luxury. It is a necessity. Without joy, our brains will run default to running on fear.” I think they have a point. And choosing joy doesn’t mean that trauma or hard things are swept under the rug. No. The book suggests we can develop habits of joy through practice even while working through the thorny thickets of trauma. Doing so ensures our survival out of trauma.
Melissa, it’s time to close out your update. You put your readers on a rollercoaster, girl. Don’t forget your role as a writer. Be kind…Rachel will want to get going soon anyway…
But she fell back asleep! I can write more!
Melissa, stop. Wrap it up, b.
The future? It is a picture still forming. But for now, as of tomorrow morning, Rachel and I are headed to Gillette. Boot camp. Marching orders? How about YOU form your own visual for the BOH’s future? What can you see? What will happen? Dust off that crystal ball. Polish those rosary beads. Consult your tree of life. Tap a line to Allah. Summon the best vibes you got.
Send me your thoughts, with joy and honesty. I will need them the most in the immediate future as I turn the key into hospital living… again!
Keep the Bus rolling in your thoughts, hearts, and words. We’ve got gallons of gratitude for you.
Rachel and I have been living in this new home for just shy of three months. During that time, I taught three classes; volunteers from the BOH kept Rachel company while I worked. As much as I think this word is cliche, this crew of Rachel companions is really amazing.
I have also learned an awful lot: anything from pruning a bush, washing organic matter from basement walls, carefully mowing my lawn with Rachel placed within eyesight, to setting up automatic mortgage payments for the new house.
I do love this new house. I often will catch myself thinking or saying aloud to Rachel, “I can’t believe we get to live here!” That one step into the home – aided by a simple ramp for Rachel’s wheelchair – gives me peace of mind for sure.
Now my attention narrows in on two fronts, one slightly bigger than the other: getting the old house on the market and getting prepped for the fall semester.
I was really hoping to have the house ready for sale by August 14. I had hired stagers to come that day. That did not happen.
Last week, I hired a handyman and his crew to do things that were beyond my generous volunteer crew. The BOH has done enormous work, but was time to yank out the ceiling lift, fix bathroom fixtures, possibly fix a stain on the wooden floors, etc. They assured me that it would get done by 8.14.
Without going into details, a large miscommunication ricocheted between workers, handyman owner, and customer. The blowback caused a delay in achieving the deadlines I had hoped for.
The renewed plan?
The handymen should complete their work in the next day or so. I have my mom coming over on Thursday to watch Rachel; I will go over to the house and empty out anything left behind that doesn’t belong. I believe it is Saturday or Monday when I will have Ardy’s Closet do some deep cleaning. Then, the stagers will be in by August 30th. Perhaps we could see a for sale sign by August 31st? Dare I dream? Did I want all this to happen earlier? Of course. It is what it is. This Bus is doing all it can to keep it moving forward.
Please allow me to highlight instrumental folks like Dylan and Ali, who spent many, many hours during evenings and weekends changing the basement into a gorgeous space; Pastor Loren, who, at the doorstep of his retirement, put in a dropped ceiling that is showstopping; Mike Wood, a man who’s put in copious time, muscle, (and patience) removing items from old to new house, helping to clean original windows from 1963, (something Jim deemed impossible and never tried it,) helping me clean stains off the garage floor, among other things; Seth Reid, Emily Anttila, and Leila and Oliver, who tackled painting projects galore – I even convinced step-grandson, Oliver, get on a ladder to remove debris from gutters; Dan Darling and Sarah Clowes from Normandale came out and did weeding AND painting; former MCTC student, now a Doctor of Biochemistry, Andrienne Gelbach, who helped Mike Wood with lifting equipment and furniture from old to new house. Mike Colestock came in on a Saturday to paint. Evelyn Antilla and Lisa Preston also helped by keeping Rachel company all weekend while I was at the old house helping the assembled crew. Of course, Emily Colestock is a partner and kindred spirit, lighting the way by living by her credo, “we are women who can, Melissa and Rachel.” She is right, but she is inspiring us with her constant presence… She pulls me out of the “I can’t” to “I will.”
Let’s also mention Susan Foster, whose guidance as my realtor has been instrumental and key to getting to where we are. I confess, there were times I felt like giving up or not doing X, Y or Z because, as I said to her, I feel like I’m rolling that rock up the hill, only to have it roll backward!
But she does two things: supports me, directing me up and onward as she pulls from her years of experience as an agent. Thank you, Susan.
I am sure, SURE, I’m forgetting someone. If you are reading this, and I haven’t thanked you, do forgive me.
That is where we are. When we get the staging done, pictures snapped, and links made, get ready to help by sharing the listing with everyone you know.
Reach out to me with any questions or thoughts. And now, I should at least attempt revising syllabi and deadlines before I hit the hay.
Good evening, I am sitting on my deck. Rachel is by my side, and the air is tender and warm. Such a lovely night to temper my battered heart.
Last night, at 5:47 p.m., Jim passed away after a gallant fight with Stage IV glioblastoma. He was surrounded by a tight circle of family and friends.
Rachel is fully aware of the situation. She knows Daddy isn’t here. She proudly claims he’s in Heaven.
I am a mix of emotions. I’ll unpack those in time.
But I’m certainly angry. Remember when I asked for a fucking miracle in healing Jim? Sure didn’t happen, did it?
Instead, the miracle shifted like a kaleidoscope, patterning people into new places creating a colorful circle of love.
Throughout this experience, my bonus sons are now committed, vibrant parts of my life; the Emily sisters tightened their grip on my hands as I have walked this valley; and the medical and hospice team offered light in a frightful moment. Look, I’m still angry, but this list of gifts will sustain me.
I am here, able to function at all, because of this. And of course, I’m grateful. Thank you!
We are going to have a private ceremony and burial, and we will have a larger celebration of life later this summer/early fall. Details pending.
For now, I’m going to catch my breath, create new habits of sleep, and return to routines whenever possible. When grief hits, I’ll “sit with my feelings,” as Emily A will say, and let your love resonate like a folk song chord.
“Rockabye, Sweet Baby James…” You are a friend to many and loved so deeply.
When I last wrote, I told you that Jim had 6 months to live. That timeline has changed.
Throughout Jim’s life, one of his best mantras had to do with when to arrive at his next destination. You’ve heard it I’m sure: “Early is on time, on time is late, and late is unforgiven.” Our Jim has started his journey early to reach God’s desk for check-in.
Just a week ago, Nurse James suggested that we were at the beginning of that 6 months. This week, that timeline has shrunk to within weeks or days. Currently he is peacefully sleeping.
Last night, close friends and family raised our glasses to Jim. All day, Jim has had Steely Dan and other greatest KBOH hits flowing nearby.
My stepsons are at my side, along with Emily A. While my emotions shift gears from one to the next, I feel tremendous support and love. The mantra for me still rings true: I am one of the luckiest, unlucky people right now.
I will keep you informed as we roll down this “carefree highway.” Thank you for riding, BOH. Melissa
Hi there, As you know, I am a hope peddler who lives “on the windy side of” optimism. But in this moment, the wheels slow for a new destination. I cannot hide from the truth of Jim’s journey. The picture of hope shifts to different panoramas.
At the last meeting with our med team, the MRI revealed tumor growth, not swelling. We are out of treatment options: Jim was given six months to live. I’m sorry if that came out too fast. I’m processing this in real time.
I have also kept Rachel in the loop about her father’s delicate situation. She knows what is happening, and she certainly doesn’t like the truth any more than I do. I have relayed to family and friends that I feel like the worst mom sometimes, but I feel as though sugarcoating this reality would do more damage.
Currently, Jim is sleeping. Sometimes he has days when he’s more awake, but this morning, he asked for a dose of morphine. This was my first time giving it. Our hospice care nurse, James, (?!) said that I did everything right when I shared that I was nervous I made a huge mistake. As a result, my guy sleeps more than sits in his ez-chair today.
He has had good days. Ones in which he eats a bit more. He smiles and nods his head a bit. Or he watches the news and responds with a WOW when Fox News gets handed a big bill and a spanking for lying.
Or, he has days when he cannot form full thoughts into sentences. He tries, and then I try to help, and then he gets frustrated, and then we continue this merry-go-round in a melody that’s offkey.
But then, he surprises me by trying to get up and shift Rachel in the middle of the night. Even in his weakness, he is still trying to be The Provider.
He sure doesn’t love giving up the nightly duty of making sure the doors and windows are locked at night. I have to repeatedly tell him that I have done it already. Even as he shuffles close to the kitchen door, latching and relatching the lock. “You have to trust me,” I tell him, firmly, gently.
I will need a wheelchair soon as his unsteadiness increases. Corner Medical Supply brought one out that didn’t fit through the front door. Nurse James from Allina Hospice is on it.
The plan to move remains in place. I have Pastor Loren and a team of good men from Good Shepherd working on a drop ceiling for the basement, and with that, he summoned an electrician to assist with lights and anything else that needs attention. Once the flooring is done thanks to Dylan, and the ceiling and lights are in, the square footage can be counted as finished space. Thus, it adds value to our home.
I would love to see Jim in the new home, even if for a small while. I would love to stretch this out for one more Christmas/Hanukkah. I would love celebrate his birthday and Rachel’s one more time.
But when he holds my hand to steady his gait, I wonder how long he will last. And when lets his own thoughts wander around in the stale air of our bedroom, asking, “Where’s my mom?” The picture shifts to a new reality, one where Jim no longer suffers, where I brave the financial frontier of home ownership solo, and where Rachel is graduating from high school, with an eye toward training for special needs students. No Jim to grill the burgers. Someone else will (have to) take Chef Jim’s place.
Life will roll on, but one of the main drivers will have hung up his hat.
That’s all I have for you now. It’s a lot. I know. I have the salt upon my cheeks to prove it.
Please continue to pray and send positive energy towards this family and the incredible support system around us. Even with this diagnosis, the only gear we got is drive.
busofhope 