Missing the Point of Fire Point

As the days of this year have grown colder and filled with fewer hours of daylight, I have felt an undeniable pull to Northeast Iowa, particularly the limestone bluffs that shape the majesty of the Upper Mississippi River Valley. I wanted to stand, once again, on a overlook that never fails to make me feel connected to a greater sense of life and my smaller-than-minute place within it: Fire Point at Effigy Mounds National Monument.

Effigy Mounds is a protected burial site regarded as the sacred resting place of Native Americans who made this gorgeous land their home more than 1,000 years before the birth of Christ. These woodland people are known as Effigy Moundbuilders, as their culture seemed centered around the construction of burial mounds whose shapes and contents remain largely mysterious. I have been fascinated by these ancient land formations crafted by ancient people since my first visits to the mounds as a child. I visited on school field trips and with my parents and sister.

In 2007 I took Mark and our boys there; our hike marked the first time I was able to stand at Fire Point with them. My sense of triumph as a mother was born of accomplishment despite adversity. People with wheelchairs do not typically hike the paths at Effigy Mounds to enjoy the view from Fire Point. Instead, they take satisfaction in the scenery along a beautiful boardwalk built near the edge of the Yellow River Forest.

Yet I had wanted both my sons – the one who moves using his legs and the one who moves using his wheelchair – to see Fire Point, and because the National Park Service found a way to accommodate the provisions of the Americans with Disabilities Act while preserving the integrity of this sacred land, our family’s Fire Point hike had been possible. The park service had provided us with a gate opener that year, along with a detailed map to a maintenance road where we could park at the top of the bluff. From there, we easily joined a well-maintained part of the trail much closer to our destination. Mark and I had then alternated between pushing or pulling Stross in his wheelchair. We shoved through cedar chips and over twigs and patches of small rocks until we reached the vista of Fire Point.

I wanted, maybe even needed, that sense of familial accomplishment again. So much of life has felt overwhelming in recent months that I hoped to find spiritual renewal atop a bluff where I had sensed it before. Our family has often thrived despite unexpected adversity. The controlled adversity of a hike to Fire Point held the promise of renewed hope. I had wanted to get there so badly, that seeing a friend’s Facebook photo of a fall hike she had taken to a strikingly similar Mississippi bluff brought me to tears when I saw it last week. I simply could not let more fall weather disappear before taking my family back to Fire Point.

The weekends of our fall calendar have been full of high school events significant to our youngest son, now in his final year of high school. Of course I wanted to take him on the trip. I wanted to squeeze in yet one more fall memory for the four of us before he moves away and makes another city his second home, but he explained why that couldn’t be – at least not this fall. Maybe in the spring, he offered.

I needed to go this fall. I needed to refresh and renew during a time of decay. So this past Sunday, the remaining three of us awoke at sunrise with a plan to head to the river and then be back before sunset. The sky was a crisp, brilliant blue; the air temperature was unseasonably cool yet refreshing. The drive was absolutely beautiful with autumn colors painted on forested hillsides, through water-shaped coulees and across rolling fields in various stages of harvest. I was happy.

After stopping at various farmer’s markets and food stands along the way, we made it to Effigy Mounds. We did not make it to Fire Point.

Since our visit in 2007, the park service modified the visitation policy for persons with disabilities who wanted access to Fire Point. A ranger explained that it was now necessary to call ahead to request a personal escort. That ranger then would be required to accompany us on our hike. This new provision had become necessary after a group traveling with a recreational vehicle had used the access point but neglected to park their vehicle. Instead, they had driven on the hiking trail with their RV and had gotten stuck somewhere on the grounds of the sacred site.

Because we had not called ahead, no ranger was available.

Mark broke the news to me without awareness of its devastating impact. While he and Stross began exploring the visitor’s center, I remained near the entrance. I asked the ranger at the desk if what Mark had told me was true. He affirmed it, and repeated his offer to Mark to schedule a future date for our family; yet I needed that day.

Weary of life as I have recently known it, I wanted the empowerment of a redo. I needed Mark and me to conquer something challenging together. I needed our family to again prove that limitations were not always insurmountable, and I wanted to rest at a vantage point that native peoples had stood and looked across thousands of years before I breathed life.

I wanted to see the majestic Mississippi River from Fire Point; but that would not be. I soon became inconsolable.

Other people were returning from hikes while new groups began fresh climbs. No other wheelchair was in sight. Stross was chattering about Native Americans and making plans to tell his history professor about what he saw on our trip and asking me how much he could spend in the gift shop and telling Mark that his Boy Scout meeting time had been changed for that evening and wheeling in circles of excitement about the raptor demonstration taking place in the center’s auditorium and wondering aloud about the one set of small mounds just outside the center that he could get to and asking when we were going to head out on the boardwalk and if that walk could count as his exercise for the day.

It was all too much for me. It was all so identical to what my days are normally like. I had wanted something more. I had wanted something I was told I could not have that day, but I had planned for that day to be different.

Why had we gotten up so early and driven so far? Why had I been so happy moments earlier but near despondent now? Why did I have to be reminded that my life’s opportunities would forever be tied to my oldest son’s circumstances? Why was I still dealing with a brand of disappointment that was 21 years old on a day I had planned for personal renewal?

And why didn’t Mark automatically give my disappointment a voice? We used to communicate with one glance and instantly take residence in the same emotional space. Now I had to fight for words when I didn’t want to open my mouth. Speaking meant truth telling. Truth telling brought tears. Tears betrayed me to my son – and my husband.

Maybe what I had really wanted was to run away for just a bit. Mark offered that.

“I’ll stay here with Stross while you hike to Fire Point,” he said.

Sob. “No, I don’t want to be there without you.”

“Stross can wait in the car and be perfectly content watching a movie. We can probably be there and back in an hour,” he offered next.

“No!” I cried and then got angry. “I will not leave my son alone in a car. I can’t believe you even suggested it. No.”

Mark had known that wasn’t really an option. Stross cannot get out of our van independently, nor can he make wise decisions should a stranger knock on his van’s door. Mark just wanted to fix things and make them better.

“If you really want to get up there, I’ll try to help you push Stross up to Fire Point. The ranger said the first half-mile is the steepest.” Mark’s voice was reluctantly accommodating.

Now Stross was paying attention. “No!” he practically shouted and began to rally a mature pout. Then, embarrassed to potentially be the focus of attention on a tenuous trek, he proclaimed with great force, “I don’t want to go. You can’t make me.”

Stross is a 21-year-old man in a wheelchair yet in possession of a child’s mind. We can try to make him do things he does not want to, but we should not. I know that.

It was my turn to pout. I again said, “no.”

Mark was frustrated with my behavior more than Stross’. “Joy, it just won’t work today.”

We all waited for me to speak through tears.

“I know,” I said, then turned from them both. “Just leave me alone for a bit.”

Mark now had two children in his charge: one easily distracted and eager to continue the excitement of the day and one crushed by life’s relentless inequity.

I would like to report on some new epiphany birthed by this disappointment or hope that my grownup meltdown on Sunday held a redemptive power equivalent to my desired spiritual renewal. Nothing. I have nothing to report or proclaim.

There is this: I was still crying when I awoke Monday. My husband held me while I cried and offered to call Effigy Mounds to make reservations for a visit to Fire Point on Tuesday, or to find someone to serve as respite for Stross while he and I made the trek alone. It is supposed to rain on Tuesday. I don’t want to stand on Fire Point, crying in the rain.

More than that: I don’t want to be reduced to tears because I am unexpectedly reminded that life doesn’t always turn out as planned. I thought I had learned that lesson decades ago.

Is it spiritual renewal I am in search of or a life reset button? I have never wanted to hit reset before; I don’t really think that’s what it is now.

I have walked where ancient people once walked; I have yet to go where they dared to go, but I will get there in time.

What my life is remains a mystery. I can only hope for ample time during a brilliant autumn to enjoy beautiful scenery with the ones I love most. That happened on Sunday. What more should I want?

. . .

Walk No More

About a month ago, I found this photo of Stross as it laid on a table covered by layers of photos at his high school. One of his former teachers, who had a penchant for capturing candid moments, took it in 2006. The moment it captured happened about one year before the teacher would learn he would die from a progressive degenerative neurological disease and about one year from us learning that the sight of Stross walking would exist only as a memory – or as an image on photo paper such as this one.

In late 2007, when a doctor advised Mark and me that it was no longer wise for Stross to walk, I cried. The doctor had delivered the news gently, and while he rightly understood we would not be surprised, he was also rightly aware that its significance was profound for us. Stross would no longer walk.

There was no need to clarify what the doctor had just shared. In fact, we had held nearly this same conversation a few times before, but on those occasions it seemed that Stross, or his body rather, had been able to keep going. Well, maybe Mark and I had wanted his body to keep going, and because we liked seeing Stross walk, Stross willed his body to do it for us.

But on this day we understood – as the doctor hoped we would – that this sight we loved to see could not happen anymore. We could no longer ask Stross to do what his body could not withstand. He was at a point of diminishing returns. If we insisted he keep trying to walk, he would be using all his physical, mental and emotional resources to break his body down rather than build it up.

The methodical four-point gait Stross learned in physical therapy made his muscles and joints do things they had arrived ill prepared to do. But it had been wonderous. Muscles and tendons capable of firing signals took over for ones that could not; malformed joints imitated well-formed ones; and underdeveloped bones bore his weight with the aid of braces capable of bearing the load. We had pushed past practical. Now, walking for Stross, while still possible, was no longer safe.

Stross would not walk again.

On the day Stross was born, we had been told he would never walk. Despite that, he had found a way to pull himself through space in an upright position. He had accomplished it with the aid of bracing devices and ambulation supports: first with a parapodium to learn what it felt like to bear weight and then with hip-knee-ankle orthotics and a reverse walker. The walker followed behind a three-year-old Stross as he pulled it or leaned against it when he tired of moving.

Once Stross began school, the forearm crutches were a challenge posed by a daring physical therapist. He believed they would boost Stross’ self-image. Mark and I had never worried about Stross’ sense of self, as his continuously smiley demeanor never left. Yet, the crutches elevated our sense of what Stross could achieve. Plus, they buoyed our spirits. The sight of him placing his bright blue crutches in a four-point gait always brought smiles – not just to Mark and me, but to anyone who happened to cross his path. Stross was our determined Mini-Us. He stood as tall as possible with those crutches, rhythmically bobbing his head in resolute willpower with each step.

Until the day of the news.

We understood from that day forward that Stross’ only means of ambulation would be a wheelchair. The pain of passing that milestone had taken my breath away and, along with it, any words to explain why I was crying. Eventually, I got this out: “I’m sorry I missed it.”

I had missed seeing the last time Stross would walk a hallway, my last opportunity to watch his awkward but grace-filled gait. Witnessing it helped me believe that impossible things were possible, but that testimony would not occur again. I had missed it.

I cried. I grieved.

Stross smiled. He was thrilled. He wanted to celebrate. There would be no more coaxing muscles into movements that resembled walking. No more physical therapy sessions designed to keep him bearing his weight as much as possible. We had always known those things would end. We had simply not known when.

We had missed it.

Stross: “I can go fast and do wheelies.”

Doctor: “Will you miss using your crutches, Stross?”

Stross: “No, you can throw them away.” (a smile)

Thrown away. I had thrown away opportunities to cherish things I now grieved. Today I can only close my eyes and try to remember. This photo helps some.

I saw a link on my Facebook wall tonight for a story titled: “Parents’ Bucket List for Dying Baby Girl Goes Viral.” It let me know that somewhere in Houston, a mom and dad are creating and celebrating milestones like crazy because their infant daughter has an incurable genetic disorder that will limit her life to 18 months.

They aren’t throwing away opportunities. They would give anything to have the life that I still – sometimes – grieve.

The mom and dad are keeping a blog written in their daughter Avery’s voice. In it, she describes her first kiss, courtesy of a 19-month-old boy named Cooper. The fact Avery will never walk – not even with braces and a walker or crutches – is not lost on me. Her parents have and will miss so many things that have been mine.

Painful. Poignant. Now I remember. This is the stuff of life.

Vaulted into the Future via a 2012 Volt

Disclosure: I was provided a $5 gift card to a local coffee shop for test driving the Volt, the same incentive provided all others who test drove this same Volt during the month of October.

I test drove a 2012 Volt on Wednesday, and I swear the car made me smarter somehow. Thank you, Lichtsinn Motors, for a driving experience I hope to enjoy as an owner one day.

Keeping the Volt’s spinning green-leaf circle centered on its efficiency target became my new way to drive. Part overachiever and part video game competitor, I wanted to drive better, and that happy spinning green ball let me know when I was in the efficiency zone. For most of my time in the Volt, I was. Whether accelerating or decelerating, I felt in sync with the car and proud, even, of the efficient way we glided to our destination together.

Smooth, quiet, comfortable and, yes, capable of impressive speed and power on the freeway, the Volt gave me a glimpse of my future. At least that’s what I said to my husband, Mark. My actual words were: “This is our future. Now, how do we afford it?”

If I had any doubt about the Volt’s futuristic role, the newest driver in our family, our 16-year-old son, Skye, blew it away. He slid into the driver’s seat with a huge smile and a “ha-ha” type of masculine giggle. Taking the steering wheel into his hands, he looked at me with pure delight and declared: “This is the future.”

So it is.

And I like this version of the future. Very much so.

From the Jetson-like sounds of the “power on” function to the near whisper of the motor, I took in the multi-sensory experience of the Volt as much as possible. I drove it on quick errands around town and then rode as a passenger on a date with my husband. City driving, highway driving – regardless of circumstance – the Volt felt more like a companion on a mission than a mode of transportation. We had places to go and a way to get there more efficiently than we ever had before. Our family's biggest hold up: Our oldest son, Stross, uses a wheelchair, and this hybrid vehicle simply isn't large enough for us.

What – specifically – I liked:

• Green Leaf Circle – I have already gushed about that. Need I say more? Be assured it wasn’t a distraction. Its location by the speedometer made it as easy to keep track of as my speed.
• Power Flow and Efficiency Screens – I absolutely loved keeping track of whether I was using battery power or engine power or if the regen battery power was at work. And between stops, I regularly checked to see my efficiency ratings and mpg, amazed at how little fuel I was consuming. I would love finding out if the novelty of this ever wears off. I hope not.
• Speed – Both Mark and I were pleasantly surprised at the Volt’s speed and power. And we both had to remind ourselves to keep checking our speed. Because the Volt runs so quietly, it’s easy to accelerate past the speed limit without hearing that you have asked the engine to go faster. Gliding. That’s what I kept thinking. I am gliding more than driving. As I said earlier, I felt at one with the car.
• Braking – Not sure what I expected about the feel of the braking system, but I liked it. Gentle to the touch when decelerating with just the right amount of tension when I needed a fast response; and, when I needed my brakes to avoid a driver who was turning through an intersection on a red light, I got them. Confidently so.
• Seating (front) – Mark and I both enjoyed the comfortable bucket seating and legroom of the passenger and driver front seats. I would describe it as a nice mix of sports car and sedan styling.
• XM Satellite Radio – I am a news junkie, so having CNN inside the car was a treat. Same for the MLB Network. We were able to catch the last innings of the first game of the World Series on our way home last night. (Congratulations, Cardinals!) Our sons had their own favorite channels, of course. (And, no, they were not on our date.)
• Keyless entry – I really enjoyed being able to walk away from the car and then approach it again - locking and unlocking with the mere push of a button. As long as the key fob was as near as my purse or pocket, I was good to go. Who wants to dig keys from the bottom of their purse on a cold day, anyway? Wonderful feature!
• iPad/iPod Compatibility – I was treated to one of my husband’s playlists from his iPad for our date. Nothing helps make a car feel like it belongs to you more quickly than having it play music of your choosing. What a treat.
• Bluetooth – I ran out of time to check out the Bluetooth function but already believe I would like it.

What – specifically – I hope gets improved in 2013:
• Touch Screen Console – I would love to see this become more like an iPad with screens that scrolled with a touch. The buttons on the Driver Information Console already feel outdated despite their clean and aesthetically pleasing design. I got an iPad a few months ago and found myself wanting to scroll to the desired screen rather than remember the exact touch area or button. Touch scrolling would greatly improve the driving experience while reducing potential distractions.
• Headlamps on Dim – The dim setting for the headlamps has a distinct and low sightline horizon. At night I kept feeling like I needed to duck my head lower to see farther. I also found myself looking forward to opportunities to return the lamps to bright.
• Seating (back) – More room is needed for back seat passengers somehow. Mark, at 6’ 2”, had a claustrophobic moment. His head had to be positioned inside the rear window bay, and his legs soon felt cramped. He tolerated a drive around the block, but after few minutes in park, he was very ready to get out, and – unfortunately for him – I had yet to learn how to override the child safety locks. Rather than searching the console, I got out of the parked car and ran to free him. I can’t imagine him willingly sitting there again anytime soon. My 5’ 11” teen tolerated the back a bit better, but only because he wasn’t claustrophobic, merely cramped.
• GPS – The system was easy to use but when I headed out on well-traveled back roads, it didn’t know where I was. This issue is common with GPS, yet I dream of a day when updates occur automatically. Wouldn’t that be great?


Chevy Runs Deep
Chevy runs deep in our family. The car my dad learned to drive first was a beautiful black and white ’55 Chevy that his parents bought new. It was the car he and my mother used to bring me home from the hospital. My husband learned to drive in a ’78 El Camino his father purchased with only a few hundred miles on it. We drove away in that vehicle on our wedding night and now our 16-year-old drives it to school. A 2007 Uplander, now approaching 100,000 miles, is the workhorse for our family. It’s the vehicle best capable of carrying the four of us, our oldest son’s wheelchair and any cargo we might have. If hybrid technology came van-sized, we would aspire to own that vehicle.

A note about the Volt’s accessibility: The carriage height and front door openings on the Volt are wonderful for manual wheelchair transfers. Unfortunately, the only way for the wheelchair to be transported in the vehicle is with both back seats down, and the wheelchair folded in half. Even then, the lift height necessary to put it inside the rear hatch was a bit of a stretch for me – easier for my taller husband. Oddly, the Volt was comparable to our El Camino as a two-seater mode of transportation for Stross as a passenger. And while we – on rare and only in-town occasions – tether his chair in the open bed of the El Camino, the Volt made it possible for the wheelchair to ride enclosed. When we don’t need to take the whole family somewhere, the Volt would make a wonderful second car for our family. If you'd like Stross' positive take on it, just watch the video below. (I find his comment after his ride rather charming - and hopeful.)

During my test drive, I felt vaulted into the future somehow and found myself wishing the automotive industry’s transition to hybrid technology comes as surely as the broadcast industry’s transition to high definition. We are smarter now, capable of driving more efficiently than ever before. I eagerly wait for the day all our family’s vehicles are primarily battery powered. (Well, we will likely still have that ’78 El Camino, as some things are simply too deep to give up.) Until then, let’s start vaulting into the future, allowing cars like the Volt to get us there.

The 2012 Chevy Volt – It’s just a smarter way to drive.
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Brothers Bickering

It is typical for brothers to bicker. Tonight I reminded myself that the way the brothers in our home bicker isn't very typical. This is what I heard happening in our living area tonight while I was in the kitchen.

"Give me my wheelchair back."

"You don't need it right now."

"Yes, I do."

"Let me finish doing some donuts."

"Skye!!!! I have to change my bag." (ostomy pouch)

"So go do it then."

"I need my wheelchair."

"OK, but let me finish first."

"Skye ... you don't want me to change my bag?"

"Stross, you are just trying to get me out of your chair."

I finally interjected: "Skye, give your brother back his chair." And he did, no objections. In fact, he was already in the process of doing just that.

Here is what you can't discern from simply reading the dialogue.

• Stross thinks it is cool that he (Stross) can do wheelies in his wheelchair.
• Skye thinks so too.
• Skye likes to see what it feels like to be in a wheelchair every once in a while.
• Stross likes it that he (Skye) wants to feel what it is like too.
• Skye likes to do donuts in Stross' wheelchair.
• Stross wants to be the only one who does cool things in his wheelchair.
• Stross will invent medical needs to conveniently provide motivation for someone to react the way he wants - not often, but certainly when someone is infringing on his territory - really, his sense of self.
• Stross' wheelchair is to Stross as Skye's legs are to Skye.
• Stross understands that.
• Skye doesn't really understand it. Perhaps he can never fully understand. Perhaps I can't either.
• Stross likes it that he (Skye) tries to understand just a little, even if it is by having fun.
• I like it too.

I continue to love my sons so much that it hurts, and I am beyond grateful for the wonder of them - individually and as brothers.

Bicker away boys. As much as you want. I'll be so sad when those days are gone. The lump already forming in my throat lets me know that I'll have to become acquainted with a new kind of hurt.

I love you, Stross.

I love you, Skye.

I hope you always know that I love being your mom.