Losing More than My Mother

Losing More Than A Mother But Maybe She Wheel Julia Rodes



A week ago marked the 10 year anniversary of losing my mother.


These past ten years of grief have shaped how I see relationships. I’ve fallen in love, made the lasting friendships that’ll stay with me, became a wife, a sister and an aunt. But in the first six years after she was gone, I also endured the worst experiences I know I’ll ever live to have. There wouldn’t be any waking up from experiences harder than assault, a traffic accident, a spinal cord injury, waking up to a paralyzed body. What I missed most in those moments was the ability to call my mom, have her take me into her arms and make it all better.


I’ve learned I grief much more than just not having my mom in my life; I also grief not having A mom in my life. Because when you lose a mother, you lose so much more than having that person. You also lose the security that a mother gives her child, the comfort that there is someone wiser and always available to help. When a daughter loses a mother, she loses the relationship between mothers and daughters AND she loses the security a mother provides her daughter. My mother surrounded, protected and loved, sometimes judgmentally or intrusively, but with well-meaning and adoring¬† intentions. I miss the person my mother was, but sometimes more than anything I miss knowing my mom would be there any time I needed her. And how I’ve needed her.

But Maybe She Wheel

I needed our mother-daughter relationship when I fell in love with a soldier and made the choice to be an Army wife. I needed the security my mother would’ve brought when I couldn’t pull pants over my paralyzed legs. I needed her smile when I embarked on mentoring other disabled people on traveling, a passion I inherited from her. I needed her wisdom in medicine to help me manage the chronic nerve pain. I needed her pride when I walked across the stage at my college graduation. I needed her for every milestone in my life and for the lives of my siblings and now her grandchildren. What losing her meant that she’ll never be there to see the adult she helped shape me to become. And I’ll never get to turn around and thank her.


In the Hindu religion, time is thought of differently. Hindu’s believe time is not linear like most of the Western world believes, where days and months march forward minute after minute. In Hinduism, time is cyclical and revolves through the four phases, or yugas, of Sat (or Krta), Treta, Dvapara and Kali that repeat themselves endlessly. Think the only period of awkward insecurity is when you’re a teenager? What if we revolved around a period of awkwardness in the circular time when we’re 15 and then revolved through time to again move through that phase at 24, 43, and 68 years old? What if I moved back through the childishly sweet phase of falling head over heels in love with Dusty when I’m 31 and 59 like I did when I was 17?

But Maybe She Wheel

If time is circular, then I will continue to move through phases where I have a mom and where I don’t. Her death is a permanent fact of my life, but that never meant my life would be absent of her presence. As I revolve around and around the circular timeline of my life, I’ll move through periods where her presence is so acute it’s as if she’s alive and then phases where her absence is like a widening void. It’s comforting to think that when I feel her presence, it may be because I’m revolving through a past time as a teenager or child when she was alive.


In the linear timeline of my life, my mother is gone and abruptly removed. But in the circular way of thinking, I both have a mother in one phase of a revolution and then do not in another phase. For fans of the Big Bang Theory, this is what I’d call my Schr√∂dinger mother. In circular time, her presence will still be there at each milestone. Her absence will be felt but her presence will still be alive. I can have the relationship, but still have lost the realistic security. I can still look up and thank her.

But Maybe She Wheel

I am an overly fortunate person in that I’ve had multiple women step in and provide that missing security of a mother. Army wives all over the world have taken my husband and myself in to provide comfort and help during our crises, actions that I will not soon forget. Her fellow nurses were there when I fell in love and married my soldier, hosting bridal showers and hastily tying the back of my wedding gown so I could dance. The wives of Army chaplains were there when I awoke paralyzed, patiently explaining that everything would be okay while they fed and comforted Dusty. They were also there to smile with pride when I graduated college two years later. I have incredible, strong, and passionate women who have surrounded me and won’t be quick to let go.

But Maybe She Wheel


The cycles of grief have moved through me over the past 10 years and have subsided to echoing ripples in my day to day. She’ll always be painfully missed in my accomplishments, adventures and pitfalls and that’s when the waves will splash over my head. But I know now that she can be both present and absent, gone and alive, in the circular spinning of my life. I’ll be glad the next time I move through the phase where I can feel her presence again.

But Maybe She Wheel


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The Wheeling Diaries: Salt Lake City to the Grand Tetons

But Maybe She Wheel Wheeling Diaries Salt Lake City to Grand Teton National Park

But Maybe She Wheel Wheeling Diaries Salt Lake City to Grand Teton National Park

Dusty and I were a little unprepared for the yawning abyss of problems an RV can. To be fair, we frugally researched and bought an older RV who’d had previous owners and already been driven not a small number of miles. And now we’re learning everything there is to know about how an RV works, how to keep an RV working and what to do when the RV doesn’t work. I don’t know if I ever thought I’d be consciously grateful to say today I’m fairly confident we live in a waterproof home or the toilet is flushing just fine again. Between resealing our windows and fixing our generator, Dusty has become a mechanic of all trades. There will never be too many times I’ll say “Thank God Dusty is an engineer” or “Wow, Dusty, you’re looking sexy in that tool belt”.

But Maybe She Wheel: Dusty the Mechanic Wheeling Diaries
The One and Only Dusty

But there’s always a steep learning curve when embarking on an adventure with a new piece of machinery, whether that be a bike, boat or RV. The first few weeks are all about grease covered hands and frantically googling stores that carry the right parts. We call our RV “La Tortuga” because, like turtles, we carry our home with us wherever we go. And while she’s older and a little rickety on the highway, she’s ours and we love her.


We saw family in Salt Lake City and tried some local beers with a cousin whose smile warms the room, but we were anxious to get back on the road and head north.

But Maybe She Wheel Utah Salt Lake City Wheeling Diaries But Maybe She Wheel Utah Salt Lake City Wheeling Diaries

Before leaving the Great Salt Lake area, we drove to Antelope Island. This state park is a large island north of the city on the Great Salt Lake and connected to the mainland by bridge. Suddenly out of the metropolis, we found ourselves weaving through long grass and scrub brush with towering giants of green and brown hills watching us from above. The road wove along the coast of the Great Salt Lake, which had receded enough to leave a muddy bank covered in white salt. We could see the mountains of the Wasatch Range on the eastern side of Salt Lake City off in the distance. Further along in the island was a ranch positioned on higher elevation, where we could park and walk along paths to see the bison roaming on the grass fields below. Ethel’s nose lifted high into the air as she caught whiffs of the grazing beasts below and I explained to her that these were not friends to meet but a “leave it” to remember. As far as accessibility goes, there was a paved path from the parking lot out a ways to the viewing area but then the path became a dirt road only fairly level. We didn’t see the campsites, but I’m told they are on gravel sites.

But Maybe She Wheel Antelope Island Utah Salt Lake City Wheeling Diaries

Dusty headed out with his trail shoes on to go run to the peaks of the green hills and Ethel and I began our run along the deserted road. With the hills to our left and the white bank of the Great Salt Lake to our right, Ethel galloped along the road with a tongue out. I looked out to the sun over the glistening white salt mud of the lake and had a thought. How cool of a picture would it be on the barren salt desert of the lake below? There was a steep embankment leading down to the lake, but up ahead was what looked like a mowed four-wheeler trail. “Surely,” I thought to myself, “that’ll be flat enough ground to get down to the lake. I have FreeWheel on, I can do this.” Ethel was more than happy to start heading towards the grass and all its’ new animal smells and we started rolling down the hill. Then careening, then bouncing and then falling down the hill. The mowed grass had looked deceptively flat, but underneath the green were mounds of dried bison dung, cut stumps and mud puddles. I’m sure a four-wheeler could navigate this terrain and once again I cursed myself for thinking my wheelchair was also an all-terrain vehicle.

But Maybe She Wheel Utah Wheeling Diairies


With one hand on Ethel’s harness and the other on my wheel with a white knuckle grip, I tried directing her to pull me away from the bison patties and tree stumps. An impossible task, there were simply too many, and soon my hand was slimy with still-warm bison poop that had smeared the hand grips on my wheel. I squished the warm poop in between my fingers as I clutched my wheelchair going through the last few meters until the lake. “I know that was crazy,” I told Ethel, “but you did a good job. Stay close, now”. I looked around in vain for anything to wipe my hands with and settled on the tall straw brush on the side of the trail. It wasn’t effective.


But the view was worth the poop. The salt flats of the Great Salt Lake bank are spellbinding and Ethel happily galloped across the white desert. The scene didn’t make sense; the white ground looked like snow, but the day was warm and the bank should be mud, but the ground wasn’t brown. Ethel and I rode around on the white mud from one side of the bank to the other, daring to move closer and closer to the actual water in the Great Salt Lake until I started to sink in the wet salt. A plethora of selfies with Ethel later and we began to head back to the road.

But Maybe She Wheel Wheeling Diaries Salt Lake City to Grand Tetons
Antelope Island, Utah

With the daunting trail ahead, I held on to Ethel to begin the treacherous ascent. Stubby, brown grass spikes pricked my hand pushing my wheel and I hopelessly tried to dodge what seemed like a field of leftovers from diuretic bison. “Walk on, Ethel,” I commanded, but she was biting away at the swarm of black flies who’d picked us as targets. Coming down to the water, we were falling too fast to fall prey to the black flies but now we were slowly, painfully crawling our way back up.


Twenty minutes later, we’d moved three meters.

Ten minutes after that, I began crying and Ethel wasn’t sure if were stopping or going.


One of Ethel’s services to me is to pull me along in stores, on sidewalks, up hills, down hills, wherever. We move slowly with the “Walk on” command and she starts running with the “Giddy up” command. But when I’m pulling on her with my full weight and am stuck in the ground, she gets confused. Her other service to me is to stand still and brace so that I can climb up over her and get back to my chair. So if we’re walking and I get stuck, instinctively she stops and braces so I can pull myself out. On terrain like we found ourselves, I needed to continually switch from “I’m stuck, brace” to “ok we can move now, walk on”. But an emotional handler, especially with the trademarked Julia overly dramatic sobbing, will confuse the service out of the service dog. Ethel didn’t understand what was going on or what she was supposed to do.


I felt my wheels squish into an especially juicy dung pile and I gave up. I called Dusty, who was just finishing his run, and he got the RV and drove to my rescue. I was frustrated, embarressed and angry that I hadn’t been able to finish what seemed like a simple, off-road trail hike. Dusty just laughed that of course, once again, I had found myself in a situation like this.

But Maybe She Wheel Grand Teton National Park Wheeling Diaries

While Ethel was slurping water, I vigorously washed my hands in the RV bathroom. When sufficiently clean, although I was considering the possibility of dousing myself with bleach, I showed Dusty the pictures we’d taken. A beautiful place plus a big dog makes for some fun pictures and glancing through them made me realize a hard truth.


I was never supposed to do that trek alone. As hard as it is to admit, I know there are places in the world where I just can’t go. The top of the Eiffel Tower, for example, doesn’t have accommodations for wheelchairs. But I’ve climbed, scratched, hauled and lifted myself into “not for disabilities” sites around the world. The key, though, is that I always had help. Dusty would be by my side, hauling my wheelchair while I low-crawled up stairs or carrying me into over fences and into towers. When Dusty’s help wasn’t enough or when he was absent, there was always someone. In college, I had wonderful friends and I hunted down the nervous freshman who wouldn’t say no to a push. In Europe, there were the good people who restored my faith in humanity time and time again. We’d communicate through hand gestures when I’d explain the elevator had broken, but wheelchair problems and smiles are universal.

But Maybe She Wheel Grand Teton National Park Wheeling Diaries

But Maybe She Wheel Grand Teton National Park Wheeling Diaries

Now that I have Ethel, I’ve got an invincibility complex. With my four-pawed SuperGirl, I feel like I’m The Wheeling Rider, a famed superhero known for the flames that follow her wheels when she takes off. Together we can face the cobblestones, gravel, hills and curbs of the world with ease, fighting crime and saving babies along the way. And some of that is true. But there’s always room for help and I forgot how to ask.


I’m not invincible, I learned today day crawling through bison dung back to the road of Antelope Island. But that doesn’t mean Ethel isn’t my SuperGirl and I’m not Wheeling Rider. Because even superheroes ask for help sometimes.

But Maybe She Wheel Salt Lake City Wheeling Dairies But Maybe She Wheel Salt Lake City Wheeling Dairies But Maybe She Wheel Salt Lake City Wheeling Dairies

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Wheeling Diaries: Part I

Wheeling Diaries Part 1 Wheeling Rodes RV

Wheeling Diaries Part 1 Wheeling Rodes RV


Day 1:


We made it to Denver. The mecca of all twenty-somethings who consider themselves adventurers, yogis, foodies, craft beer lovers, amateur snowboarder/skier/mountain biker/trail runner/skateboarders, music lovers or anyone who still says “that’s far out, man”. Wherever we come from, we all feel the wanderlust of Denver tug at our heartstrings and point our feet west. And Dusty, Ethel and I finally made it.


We’ve been dreaming about Denver for months, since we began dreaming about our RV life. Dusty knew a guy who had been part of the Reserve unit out here and a twenty minute conversation was all it took to convince Dusty that if he was going to leave active duty for the reserves, then he’d do it in Denver.


After the movers came to get the rest of our household goods to put into storage for the next so-many months, the three of us officially moved into our RV and headed west. Thanks to the modifications for accessible living for a wheelchair user inside our small Class-C RV, I’ve been comfortable from the first night. It helps that we traveled so recklessly, frugally, and dangerously through Europe, sleeping on train cars, waking up to puking hostel roommates and car camping through rain and snow. Our standards for how to travel comfortable are way WAY low. Moving into a recreational vehicle is luxurious. I mean, this is way cool.


It took two days driving west from Fort Leonard Wood, Missouri to get here last night. Two long days. I mean, Kansas never quit. No wonder it took a tornado to get Dorothy out.

Dusty towed my little car behind the RV and I followed in our small SUV filled to the brim with things we might need over the next year. We had carefully packed away our winter clothes, extra medical supplies if/when I run out, some of Dusty’s toys in the way of a mountain bike and skis and a gracious gift of a racing wheelchair I have on loan from a friend. The two cars will stay here in Denver in a storage garage so that when we return once a month for Dusty to drill with his Reserve unit, we can exchange clothes and toys out as the seasons change.


Without having done much exploring, I’m already impressed with this cool little city of Denver. The views are incredible and reminiscent of driving in southern Germany headed to Switzerland or Austria and catching the first glimpse of the Alps. But the western scrub brush terrain is nearly identical to Portugal, minus the trees stripped of bark. It’s beautiful here and that’s an understatement. Well done, Denver, well done.


We’re parked right now at Cherry Creek State Park, where we’ll be for a week. And get this, there are handicapped accessible RV parking spots. Everything is paved, no gravel in site at our spot, which makes getting around in the chair so much easier. Even though we’re still within city limits, Denver just happens to have this large, beautiful state park filled with deer so close Ethel went after one (we had a talk afterwards. Deer are definitely a leave it and she knew that before chasing her friend). I’m not sure if it’s the park, the craft beer or the infamous weed of Denver, but every person we’ve met so far hasn’t stopped smiling.


And after a day of puttering around town doing errands, I have to say I haven’t either. Pretty good for Day 1.


Day 3: Denver

Our first week in the RV, our first week in Denver and our first week of learning that RV’s are VERY SMALL.

The purpose of this week was not to begin exploring the coffee bars and marijuana dispensaries but to set up Denver as our home base. We had a PO Box to set up, Army orders to finalize, catheter and pharmaceutical strategies to finalize and more importantly, friends-closer-than-family to see and their baby to kiss.

We’ve been living in the campground of Cherry Creek State Park in the southeastern village Aurora of Denver. How cool of a city to have these pockets of state parks spread throughout their city. We’ll return to this same park every month when we circle back to Denver for Dusty to drill with his Army Reserve unit. Smoothly paved bike trails leave the campground where we’re parked and circle along the shore of the Cherry Creek Lake. Ethel and I run together each morning along these trails. She wakes us up with whimpers at seven for breakfast and then is so excited to begin our run, she’s knocked over a few coats with her wagging tail. When we run, I simply hold onto her harness and direct her along the path and she sprints her heart out. Her focus is on finding the numerous prairie dogs that scamper all over the park or to meet one of the domesticated deer that sleep on the grass in between RVs in the campground. She’s not allowed to do either and it only takes one “leave it” to reminder her, but the girl still dreams.

Wheeling Diaries But Maybe She Wheel
Wheeling Diaries: Sass on the road

Every adventure begins with fumbling and falling as a groove is found and apprehension overcome. So far in the start of our adventure, I’ve managed to spill water over the tub lip and bathroom door onto the flooring after a shower, our heating has come and gone as a switch was found broken, my wheelchair lift suddenly would not turn on and the most unfortunate, Dusty failed to properly connect the poop tube when dumping at a gas station. Yikes.


(Ethel and I were on a walk when this happened and I returned to find a shell-shocked husband muttering to himself, “A shower. I need a shower”)


Thank goodness we’ve traveled together before. Thank goodness I learned in Brussels to nicely tell Dusty when he’s trying to push me over cobblestones without invitation that “if you touch my chair one more time I’m going to scream”. Thank goodness we’ve shared a tiny bathroom at any number of hostels and know that a skidmark, no matter how small, is never acceptable. Thank goodness we know how to take a step back when the adventure just becomes an overwhelming mess. Thank goodness we know it’s more important to say “I’m proud of you. We’ve got this. I love you” than “I was right”.


Ethel’s input in this experience is one of hilarity. She loves Denver, mainly for the numerous dog parks and trails that have smells never before smelt. She’s even ventured out into the lake in an attempt to chase ducks, which is quite an accomplishment for a girl who despises water or getting wet. She’s adjusted well to the RV and knows her bed well, which is a bench placed over the two front seats on which an old yoga pad supports her thick foam mat. When we’re parked, the bench is her place when she’s inside and at night. When we’re driving, the bench is up against the wall and her mats lie behind Dusty’s chair so she can still keep an eye on me. She had a few moments of acting out when we were leaving Missouri and on the road, but now I’m looking at a smile lifting her cheeks as she watches the deer.


It’s a good Day 3.


Day 7: Leaving Denver

What a week. We’ve been living as full-time Rvers for a full seven days and I feel like I know nothing about the mechanics of our house on wheels. Dusty is very patient as he explains why we need the generator turned on to make coffee when we’re driving the RV or why the back outlets won’t charge our phones at night unless we’re plugged into a campground. I feel like I’m living in one of the Circuits & Electricity problems from undergraduate Physics.


We’re headed out of Denver now and making our way to Salt Lake City. We both have family there and we’re excited to see them. As great as it was, the Army life gave few opportunities to see distant family or attend family reunions and it’s exciting to take this opportunity now. As I write this, we’re on the outskirts of Denver at an RV dealership while Dusty gets educated on some sort of switch that has to do with our propane (again, I think I had to solve this problem in a Physics lab and I have no idea how I did it then). It’s been a business day of getting both our cars that we took out here in storage and changing all the details of our insurances. We drove both cars out here for convenience; we didn’t want to leave them in Missouri and we figured they’d be nice to have whenever we circle back to Denver. Through a stroke of genius on my husband’s part, however, we figured out we could stock both cars with items that we may want during the year at some point but couldn’t fit in the RV right now. As simplified and streamlined as we tried to make our life, items like winter coats, skis, my awesome stock of yarn for crocheting and a hand cycle just couldn’t be left out. So they’re in storage and when we need them, we’ll swap them out form something in the RV. We won’t be returning to Denver for two months this time around and we planned our route enough to know we won’t be in winter weather and it would be okay to leave those items behind.


Days 4, 5 and 6 bred a sense of comfort that was small at first but now is pronounced. This RV is definitely home and I’m at peace here. Now that some of the bugs have been worked out, Dusty the Engineer is starting to clock in earlier and beginning to relax sooner. We’re finding our groove and now that we’ve finished all the “moving business” and are hitting the road, I have a feeling our Zen is just around the bend.


Update: Denver very clearly did NOT want us to leave. Just as we were going through Golden, CO northwest of the city limits of Denver on a very busy highway, we ran out of gas. Dusty had been watching the gas gauge and was convinced it was reading wrong. “I just know we haven’t gone through all of the gas we had this past week. There’s no way.”


Ten minutes later I was frantically calling “My side is clear!” as we crossed two lanes of pull off the highway sputtering on fumes.


Because we’re two of the luckiest, blessed sons o’ witches if there ever were, we happen to have two friends in Golden and I dialed one of their numbers hoping against all odds they were home. He was and happened to be close by (again, read the part about us being followed by a rainbow of lucky stars) and ten minutes later was pulling up behind us with a five gallon jug of gas. As Dusty drained the jug into our tank, our friend got the tour of the RV that we hadn’t been able to show when we had dinner earlier in the week (we had left the RV at our campsite and driven our car to the dinner). A few #ranouttagas #butdidn’tdieonthehighway selfies later with heartfelt thanks and we are back on the road.


Follow us on Instagram to watch us move state to state, national park to national park and campground to campground at @butmaybeshewheel !

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Life on the RODES

But Maybe She Wheel Life on the Rodes

But Maybe She Wheel Life on the Rodes

To those who know us, our announcement about this next chapter in our life should come to no surprise.


We’re 26 and 28 years old. We were married when we were 19 and 21. I was injured in an accident and became a paraplegic at 21 and he was 23. We survived our first deployment at 22 and 24. We traveled Europe and Africa at 25 and 27. And now we’re saying goodbye.


There are several “checkpoints” in an Army career where you have the option of leaving service or diving a little deeper into the commitment, sacrifice and adjustments the Army life requires. In Dusty’s career, when we moved to Fort Leonard Wood, we were faced with another checkpoint. But there was a problem; for Dusty to continue with the Army, it would make my dream of going to medical school with the support and help of a present husband just a little harder. We prayed and prayed. God molded our hearts and pointed our feet towards the door. Our life has definitely shouldered too many struggles already. We don’t need to voluntarily add more.


So Dusty found an Army Reserve unit in Denver. I studied my butt off and did well on the preliminary medical school admission test. We sold our couches, dart board and donated boxes of clothes. I explained all the upcoming changes to Ethel. And then we bought an RV.


We’re setting out on a journey to wake up each morning with the only goal being to enjoy the day. We’re putting aside the constant race of getting higher in the career ladder, making more to buy things we don’t need and falling asleep each night just a little exhausted by the trivial fires that seem to be lit every morning. We have this next year before I know where I’ll be attending school and Dusty just has to drill once a month. We set up a home base in Denver, got a PO Box, put cars in storage and now we’re hitting the road.


There are more important things to spend the day with than the anxiety and ego that seemed to underlie the career focus our life had. So we’re shutting the door on those to instead embrace the beauties of the Western US and the happiness of the complexities of marriage. And Ethel, with her travel bowls and working vest ready, has been more than happy to discover this life with us. As long as her Kong is full of peanut butter, she’s a happy camper.


Wish us luck and please follow us along here as I write our Wheeling Diaries and more!


Wheeling Diaries of Wheeling Rodes RV

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