Friday, October 12, 2012

All in Due Time

I am weak. Ready-to-cry-at-a-minute, afraid-of-the-future, not-able-to-contemplate-scary-outcomes-without-some-worst-case-scenario-planning weak.

At least I was this morning, and I was reminded of the intensity of this condition after visiting my doctor about a persistent yet irregular pain in my left calf. It has bothered me since Monday, the day after our family’s six-hour car ride to the Mississippi River and back. The doctor appointment seemed wise after failed attempts to massage the pain away, stretch the pain away, and deaden the pain away with Aleve. After discovering the left calf and its corresponding ankle measured .5 cm larger than the right one, the doctor employed medical best practices. She sent me immediately to the radiology department in a city 35 miles away for a Dopplar scan to rule out a DVT, deep vein thrombosis.

I was to drive directly there (“but don’t break any speed limits”) and then to wait for confirmation that the radiologist and my doctor had discussed the results. Should I have a blood clot in my leg, I might need to check into the hospital.

My results were negative, yet from 8:45 a.m. to 11:25 a.m. I wasn’t positive they would be, so I began making plans. The worst-case-scenario kind. Not actually the absolute worst, but the kind where someone could pick up Mark (because we only have one operating vehicle and I had it), bring me clothes and toiletries, inform our youngest why we can’t be at his senior year homecoming events, and help figure out how to care for Stross. I didn’t get that last one fleshed out satisfactorily. Too many details – medical supplies, cath schedule, ostomy care, accessible transportation (remember, I had our van), and ways to occupy his time.

I have had to formulate plans on the move in this manner before – many times before – but I have not had to do it when I’ve been the patient.

When I finally reached my sister by phone, I knew that connecting her with Mark – should the need arise – meant they could complete my planning without assistance. Still, my run-thru felt lacking.

Mark and I work best under pressure and when in proximity of one another. We had not been afforded that luxury. Plus, I was operating on less sleep than normal. One more thing: We no longer had adequate respite in place for Stross. Long story. The point of that story is this: Mark and I, once again, are the only living human beings who know “The Care and Feeding of Stross from A to Z.” Relatives are not even up to speed. Mark and I know it is important to not grow tired of this endless need to find and train members for our support team, but we have been doing it for more than two decades. After I-have-lost-count-of-how-many respite workers and caregivers; we have grown tired of it. We just have.

A friend has volunteered to learn – a genuine offer – but we have not made time for her orientation. She has a busy life. A family. A career. We will get to that someday. We promise.

Stross is more independent that he ever has been, even if not fully independent. He will never be fully independent.

Yes, we are still young and need to think of ourselves.

Yes, we know there are many good options.

Yes, we know what those options are.

Yes, we know others can take care of him, and he will be fine – even thrive.

Yes, we even know that one day it will not be us taking care of him at all, but such a time has not arrived.

We won’t wait for a worst-case-scenario, but we won’t needlessly rush when quality of life is at stake, either. Too many factors are in the air. Politicians using waiver programs in political warfare. Fluctuating finances. Uncertainty about plans that our parents, our siblings, and our other son are making about their respective futures.

As with today, negative results can mean a positive outcome.

That’s what happened this time. Thankfully.

At my doctor’s instruction, I am being more intentional tonight about rest-ice-elevation-Aleve, and more aware about a possible relationship to sciatica. The calf pain will resolve. I know my parental pain will resurface and need to be addressed as intentionally as the calf pain; it will likely present as a moment of weakness.

All in due time.

Tuesday, October 9, 2012

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?

. . .

Thursday, October 4, 2012

The Independence Paradox

Walking past my neighbor's home today I stopped to say "hi," because I had not done it in a few days. Mrs. F, a new widow, is nearly 90 years of age with eyesight regarded as legally blind. She is still quite able, however, and extremely determined to prove how capable she is.

Mr. F enjoyed most of the spring with her, yet by summer he knew he wasn’t well. He kept his awareness from her as long as possible – until a couple of weeks before his death. He left about a month before summer turned to fall. Now, as days of daylight grow shorter, I wonder how much colder her life will seem when winter arrives.

I pushed the doorbell three times in rapid succession and rapped on the door in a unique rhythm. Mrs. F smiled broadly, as she usually does upon recognizing my friendly tap and physical form, and she wondered aloud where I had been.

"We have had some busy days," I said and then filled her in on activities Mark and I had enjoyed in support of our children and also events we had attended for work and pleasure.

"I had hoped nothing was wrong," she said.

"No, nothing wrong.” Then, recognizing how she had come to rely on my attentiveness, I offered an apology for not having stopped by sooner. “Is there anything you need from the grocery store? I plan to go later," I asked.

“Yes,” she said. She did need some things, but someone else was going to help with that. “She hasn’t called yet, though, so I don’t know.”

“Well, what if I call to check before I get ready to go to the store? That will give you time to check and even time to get a list ready,” I offered.

“That will be fine. I really only need a few things,” she said. “Thank you.”

I got a call within the hour. She had cancelled her other offer and wanted to know if mine was still open. “Certainly. I’ll pick you up at 4 p.m.”

“Oh, that will work great,” she said.

“I’ll see you then,” I assured.

At 4:02 p.m., her front door opened before my van had come to a stop. I got out to assist, but then waited. If she needed my help – closing the door, locking the door with her key, finding secure footing for each step – I would notice. I finally asked if she would appreciate help just to be certain.

“I’ll be fine,” she reassured. “I have this bar to grab that Mr. F put here for me.”

She grabbed that bar as if holding his hand. He had facilitated her independence then and now – at least for a while more.

The ride to the store was full of small talk about autumn: the leaves in her yard she was proud she had managed to rake earlier in the day, the foliage of trees in colors she can see, the children playing outside the local daycare who were enjoying one of the last warm days of the year.

The aisles of the store were comforting and familiar even if the placement of her desired products had become a mystery. She only needed to locate two items: bread and margarine. “I have become a big fan of toast,” she said. My list was three times as long, allowing for more time to be out, more time to recognize people’s voices, and more time to be seen. More time, also, to feel alive on one of the last warm days of the year.

Well-wishers added to a sense of well being.

“Why, hello.” “I was so sorry to learn about your husband.” “So good to see you out.” “How are you?”

Mrs. F smiled throughout. She kept her tears glistening inside her eyelids. She kept pushing her cart through open spaces, allowing me to take the lead as we moved through the store.

Returning home, she exited the van while I carried her two items to the door. I waited as she felt for the opening in the key lock and then made two unsuccessful attempts to insert her key. “Just a little higher,” I suggested. She opted to keep her left index finger on the opening while sliding her house key under that finger and into the slot with the aid of her right hand. “Success!” I exclaimed on her behalf, and then handed her purchases to her – all $3.19 worth.

After a bit more small talk, I opened the door to leave. She followed in order to lock the door behind me.

“Oh, wait,” she said. “Before you go, can you open this bottle of pills?”

“Certainly.” I obliged and opened.

“How did you do that? Will you show me?” Of course, I would.

“Feel these grips on either side of the cap? Just squeeze those and turn. Wah-la.”

Her face lighted. “My goodness. That was easy.”

“Why don’t you do it before I go just to be sure you don’t have questions.”

She easily opened it herself, and then, embarrassed, apologized for even asking. I reassured her that the demonstration had been my pleasure and she should not hesitate to ask for assistance again should the need arise. Then I left.

Mrs. F is doing well. She misses her husband of more than 60 years dearly, but she is doing well.

Independence. We aspire to it. We work to achieve it. We hang onto it in all ways possible.

I have learned the most valuable lessons about independence from my oldest son.

One tenet in particular: Independence is a paradox. It can only be achieved with the help of others.

Countries achieve independence when patriots fight – together.

Children exercise independence after learning skills from parents, friends and educators who have done their best work – together.

People remain independent through the help of others who support their goals and are willing to provide assistance as needed. The goals are accomplished together.

Independence comes through acceptance of our interdependence. It just does.

...

Saturday, September 22, 2012

Sweater Weather

Vintage challenges in modern attire.
Dressed
yet not ready.

Dresssers poised to help.
Some holding out timeless attire.
Some failing at fit.
Fashion does not matter.

Warmth, suitability, dependability.
Covering for all ages – all time – is the need.

Not easy, but easier
to closet dressers away.
Seasons past.
Times changed.
Treasures tucked into memory trunks
to make room for what can be worn now.

Staples remain.
Faithful favorites who always fit,
always accentuate the positive
while deflecting attention from the trouble spots.
And with style.

Keep the classics.
Pass on ill fitting.
Discard the worn.
Live within the means.

Dressers poised to help.
Covering for all ages – all time – is the need.
Warmth, suitability, dependability.
Not just during sweater weather,
but all seasons.

. . .

Thursday, September 13, 2012

R-E-S-P-E-C-T: What Are You Saying?

I remember how I felt when I heard my grandmother use the word “Negroes.”

Confused, disillusioned, and sad without knowing what I was sad about.

She offered it matter-of-factly as part of an answer to a question.

Me: “What is a pickaninny?”

Grandma: “Little Negroes.”

My grandmother, my grandfather, my little sister, and I were outside eating slices of juicy watermelon. We were having fun spitting seeds far enough to clear their wide span of patio – a rounded section of cement that was covered in green, outdoor carpeting intended to look like grass.

The “Negro” reference came about halfway through eating and spitting when my grandmother told us “a little riddle” that someone – she thought probably her mother or brothers - had taught her.

Grandma’s rhymes and riddles were fun. When really young, one of my feet would have cows heading to market while the other would have piggies doing the same. And I absolutely loved my grandma’s story about the dam man selling dam water and the buyer telling the dam man to keep his dam water and that Grandma could recite the entire story “without swearing even once.”

A new riddle from Grandma sounded fun. She began.

“See if you can guess what this is. There was a green house. Inside the green house was a white house. Inside the white house was a red house. And inside the red house were lots of little black pickaninnies. Do you know what it is?”

I did not.

I did know something felt wrong.

My grandmother said the riddle again, but the entire scenario was too much for my elementary brain to process – my younger sister was equally lost. We held no reference to the word “pickaninnies” until Grandma defined it for us as “little Negroes,” and we held no stereotypical connection to link people who were black – the term we had learned to use – to watermelon.

Watermelon was the answer, but she had to tell us. My little sister had been puzzled; I had not even wanted to guess.

I remember watching Grandma point to the green shell of the watermelon, then to the white rind and next the red pulp before tapping a few individual black seeds as she recited the riddle a third time. I desperately wanted “pickaninnies” to be another term for seeds. When she said the word “pickaninnies” again, I asked, “Grandma, do people like being called that? Is it a good word?”

Grandma didn’t look at me. She was quiet and thinking, wondering how to respond, I supposed.

I wish I could remember what she said. I cannot. Probably because I knew the answer regardless of the words she chose. I did not want to be called a pickaninny. Why would someone else?

I regarded my grandmother differently after that riddle. Her riddle taught me that respect lived in layers.

I could respect my grandmother as the matriarch of my father’s family, but I also needed to respect her life in the context of its experiences. They had shaped her. That is how I regard the impact of that riddle now. Back then I merely catalogued it as something I needed to ask my mom and dad about on the car ride home. I wanted to watch their faces when I told them that Grandma had taught me what a pickaninny was.

Their reactions confirmed what I already knew. I was not to use that word–or the word “Negro.” Once upon a time, my father explained, people who were white used those words to describe people who were black, but we are not to do that anymore. I sensed my father’s awkward struggle with feelings about the word his mother had taught us. I sensed that children might grow up to understand some things better than their parents. Adulthood felt more mysterious. Rather exciting, but scary. Complex.

I am unable to place the watermelon riddle in a chronology with the first time I met someone who was black. I am fairly certain it was in 1971 when I was in first or second grade. My parents invited an African student from a nearby college to dinner, and he came along with his wife and baby daughter. I recall my parents’ nervous excitement. My father, a government and history teacher, helped me understand this type of dinner was extremely rare for a family like ours. No one black lived in our small Iowa town.

He wanted me to remember that they were just like us. I was to use my manners and be on my best behavior. Both Mom and Dad stressed manners – but there was nothing uncommon about that. The mantra shared before important public functions was “Remember: Be seen but not heard.” I could, however, speak when spoken to.

My favorite adults became those who talked with children, and I developed a habit of hanging around – being seen – until I had a chance to be heard. On occasions when I was encouraged to leave a room and “go play,” often my “play” became hiding and listening.

I learned a great deal listening to adults talk to one another and watching them interact. I learned more by asking questions when I got the chance.

“Grandma, do people like being called that? Is it a good word?”

Layers of respect. They could be seen – and felt. Those with the greatest allocations of respect could talk about anything with anybody at anytime. They understood humans were more alike than unalike. They understood when it was offensive to use words that did not apply anymore. They understood respect could be diminished by a verbal misstep, misunderstanding or miscalculation, but they took the risks necessary to communicate anyway. How else could they learn?

Some things when said aloud might feel right; some things might feel wrong. You have to say something aloud to find out.

I believe my grandmother knew that the term pickaninny no longer fit; but I also believe she had no other experience to draw upon when reaching for something fun to share with her granddaughters about watermelon. Life experiences had created the contours of who she had become. I learned to respect that. I also learned that I harbored a need to ask questions about topics that might make people uncomfortable.

Four decades after discovering that respect lives in layers, I no longer wait to speak until spoken to, yet I continue to struggle with how I should regard people who reach for new ways to interact and offer stories that leave me disillusioned and sad.

Who were they to me before?

Who are they to me now?

Who have I become to them?

Sometime in 2008, the year my grandmother died, my parents were sorting through the last of my grandparents’ things. They had both lived into their early 90s–my grandmother dying at age 91, seven years past my grandfather’s death at age 93. We grandchildren were given items that held sentimental value to us. Among my chosen items were Mammy salt and pepper shakers and a Mammy bell. I did not remember them specifically, but I remembered the watermelon riddle that seemed to match somehow.

I wanted to believe that the items were vintage, dating to the 1930s or 1940s, and safely part of an era where most American adults who had been born white did not yet understand that stereotyping black people was overtly racist. But when sorting, my parents found the items’ original boxes. They were manufactured in China in 1992, one year after the birth of my oldest child.

I never talked about race with my grandmother when growing up. Not even during a conversation when she told me about working with a woman who she always thought wore the darkest stockings she had ever seen. Grandma had said, “One day I asked her, ‘Where do you get such dark stockings?’ and the woman told me, ‘Why those are my legs.’” Grandma continued, “She was black. I could hardly believe it. Isn’t that something? What do you think of that?”

I could hardly believe what she had said either. I did not want to tell Grandma my feelings about her story, and I managed to hold back any questioning as well. I knew it would not have changed things. Not my grandmother’s understanding about the varying degrees of human skin tone, nor my respect for my grandmother – that had locked into a position a few layers from where it had existed during my childhood and had since held fast.

I am less than a decade from the age my grandmother was when she taught me the word “pickaninnies.” The conversations I have today that leave me disillusioned and confused are with people I respect and regard as my peers, and the words that make me sad … well, I cannot trust what might happen if I type them here.

I can share what remains: I am left wondering about the nature of respect.

We can respect people for who they are.

We can respect people for what they do.

We can respect people for how they behave.

Those forms of respect come easy.

But what about respecting what people believe? What does that form of respect look like? I honestly don’t know, for it bleeds into who they are and what they do. It certainly dictates how they behave.

If I want to learn more about what a person believes, may I ask without him or her becoming offended? If I want someone to understand what I believe, may I simply volunteer it and trust him or her to do the same? How can I tell if we share a measure of respect?

I believe the answer is this: We are able to talk about anything at anytime.

But, apparently, you can’t do that with just anybody.

I wish you could.

I really wish you could.

. . .

Friday, August 17, 2012

Sitting Close for Comfort

Because he uses a wheelchair, Stross, now 21 years old, is often able to sit close: stage productions, political rallies, concerts, weddings. As companions on his life journey, we - Skye, Mark and I - get to sit close as well. Today we had front row seats at 22-year-old Tad's funeral. Not exactly front pew, but the first row of seats in his church's choir loft overflow. Our elevated position gave us an unobstructed view of all primary actors and action.

Stross was delighted. He took in everything, interpreting scenery and scenes as the morning moved forward. His commentary - eager, excited and childlike - conveyed the disconnect we experience daily. His life, interpreted through a prism of intellectual disability, is locked in time even as it moves forward. The joy we see through him, illuminated by a similarly faceted prism, is ensconced with fears for his future - our future.

Today we watched a family - a mom, a dad and a brother - begin to reshape their future. They said a penetrating goodbye to someone they admired deeply and loved fiercely. A boy who had grown to need a walker and then a wheelchair. A young man who had figured out a way to attend college, while enjoying every life-changing experience possible regardless of perceived limitations. A man who had recently begun making plans for what might come next.

But before next things could come, his heart - a kind and free-spirited life force that had helped him collect hundreds of friends - burst suddenly and swiftly; so today we joined his family in saying goodbye.

I have imagined what such a funeral might be like for us. As in, I have imagined such an event - for us. Today I watched it play out in a familiar way. Not identical. But familiar. Close to what I've envisioned should such a fate befall us, but not quite identical in many ways. Of course, my imaginings reform as life reshapes me, but the grief, the pain, the loss - those remain. The greatest, perhaps, is the loss.

I have been watching Skye, already feeling the pain of separation that his own move to college will bring just one year from now, and have recognized how grieving has begun. Our family is acquainted with loss - the type that infiltrates a day's most ordinary tasks. Because life insists on moving forward, goodbyes are part of each day. Still, my heart hurt for Skye as I heard Tad's brother, Cody, talk about an ordinary Friday night spent with his brother, doing the kind of things brothers love to do together. I hurt as I watched Skye recognize and vicariously experience deep loss.

I hurt for Mark too. Fathers should not have to feel this brand of helplessness. Tad's dad could not have helped his son when he most needed him. Mark knows what that means. He lost his innocence about suffering long ago. Mark has lived the type of frustrating and near-debilitating helplessness that Tad's dad might be facing now, only our son is still with us. For now.

That's the most pain-filled part. Not knowing if we will outlive him or if he will outlive us.

No. That's not it.

The most painful part - penetratingly painful - is not knowing which scenario would hurt the least. For him. For Skye. For us - Mark and me.

Goodbyes are difficult. But the not knowing - that may be the worst of all. We know such not-knowing well.

Now hope that is seen is not hope. For who hopes for what is seen? But if we hope for what we do not see, we wait for it with patience. Likewise the Spirit helps us in our weakness; for we do not know how to pray as we ought, but that very Spirit intercedes with sighs too deep for words. And God, who searches the heart, knows what is the mind of the Spirit, because the Spirit intercedes for the saints according to the will of God. - Romans 8:24-27 (NRSV)
I remain grateful for the opportunity to sit close in life. To see scenes play out that others choose to view at a distance. I am also grateful for my capacity to vicariously live experiences that enrich life in divine ways.

And as for the young man who sat next to me today - the boy in a man's body who was delighted to watch and see and ask questions and wonder - I plan to keep sitting close to him and his brother and his father for as long as humanly possible, sighing with groans too deep for words to express.

In Memory of Tad Clovis Venzke . . .

Wednesday, June 27, 2012

Arachnid War Mentality

Spiders are fine by me as
long as they mind their business
while I am minding mine.
But sometimes,
maybe about two or three times a year,
I find a spider minding her business where
I am minding mine.
If I feel threatened and if help is nearby,
I yell for assistance, deferring responsibility for
the spider’s life to the whims of my assister.
Other times I choose to ignore the spider,
counting on the fact that she will
return my good favor by ignoring me the
remainder of her spider days.
But then there are days like today when
I employ a now decades-old skill first discovered after my
oldest child’s birth.
I transform into a ferocious warrior armed with
whatever I can grab.
I move quickly, before I lose will, motivated by
one powerful,
accusation:
Don’t harm my children.
Then, staring at what might remain, I attempt to avoid
this disquieting
consideration:
Was she thinking the same?
© Joy M. Newcom, June 27, 2012
. . .


























Monday, June 25, 2012

From Bully to Good Neighbor

Tonight I am cleaning a closet that has been storing - among other things - more than a decade's worth of school papers for both of our sons. Parents know school papers. Each has unique importance and meaning, yet each is a building block of a colossal mess when mom and/or dad have neglected the act of treasure triage.

The challenges of Stross' school years made triage difficult in the midst of those moments. I wanted to hold onto memories of each educational victory. All large, none small. So I delayed decision making about Stross' school papers until after he graduated. That was three years ago; I may be delaying it again this week.

This evening Skye's stash has been serving as my warmup. I am determined to look at each precious piece of Skye's educational milestones and force myself into a decision. Some decisions have been easier than others. For instance, the stories he wrote - one after another. During preschool, kindergarten and first grade, he would sometimes write and illustrate multiple masterpieces a day. I am saving them all - for now.

I am also saving notes from teachers that provide early insight into the person I recognize in a more mature form today. So far this is one of my favorites. I have titled it "From Bully to Good Neighbor."

I hold no memory of the incident Skye's kindergarten teacher reported on the note. Apparently another boy in the class was organizing a bully group; I am not clear if Skye had been chosen to be part of this select entourage. I only know that he presented his classmate with an alternative after Mrs. Shirk said they could only form "good" groups. Skye's solution: the Good Neighbor Group.

I don't know if that is what happened on that promising Spring day in 2001, but I continue to hold such a hope for my son more than a decade later. When groups are forming and invitations are offered him, I hope he self-identifies as a good neighbor and then fulfills his self-appointed role. I hold the same hope for the boy who wanted to classify classmates as bullies that day, wherever he might now be living. The world needs to be filled with good neighbors. Every classroom, every home.

I am thankful for those who help teach these lessons in kindergarten. Don't be a bully. Be a good neighbor. Sounds pretty simple to me.

Tuesday, June 19, 2012

Time Passages

Our tree house defines our backyard. Before that, it defined much of our sons’ childhoods.

But our sons are grown now. Stross, at 21, can no longer maneuver his body up the climbing tower we designed to accommodate his physical limitations. The structure has become something he visits when his parents are hosting an outdoor event.

Skye, four years his junior, also no longer clambers up the tower during imaginary games invented by a cadre of confidantes similar in age. Confidential conversations still occur under the willow, only now they happen late at night while seated in the same spots grownups typically choose.

The photo of eight young men that looks like it was taken through a darkened, dirty window spotted with water was taken exactly that way. I clandestinely clicked and then posted it to Instagram for their review and comment. That is how life is lived now.

Our boys have grown up. Our sons are young men. I think the tree house has noticed. I certainly have.

A few weeks ago, I invited a friend and her two little boys, Zach and Cody, to join Mark and me in a picnic atop the tree house’s tower. They helped me pack a picnic basket before scrambling outside to begin an adventuresome climb to the top. The climb was also adventuresome for their mom, Mark and me.

Basket balanced. Steps well placed. Everyone safely seated with a view unimagined from the ground. The magic of the moment lived in their eyes: a bit scared, a bit awed, a bit eager to eat. And soon after their fun began, they were ready for it to end. There were more adventures to chase; more spaces to explore.

Time passes quickly where little boys are concerned: our boys, the little boys who were our guests, the little boys and little girls who will visit our tree house in the future or even call it their own one day.

That is how life is now. That is how life has always been.

Instagram moments. Captured in time.

Enjoy a look back: Terrific Tree House = Fun for All . . .

Saturday, May 12, 2012

Moms in All Shapes, Faiths and Sizes

In the earliest part of May last year, I told bits and pieces of my motherhood journey at a retreat for moms of special needs children. The event, a ministry of Valley Church in West Des Moines, also included a facial, a foot exfoliation, a hand massage, a neck and upper back massage, a jewelry making session and a time to chat with one another over healthy snacks. Prayers were bookends for our extended morning, a time spent thinking about what it meant to be a mom alongside other moms who understood how complicated our individualized versions of this role had become.

While I wasn't chronologically the oldest mother there, I was the most senior member of our hodgepodge, not-so-secret-yet-oft-misunderstood organization. It is a club with unintentional membership and compulsory participation. After we are inducted by one of our children, our membership lasts a lifetime with daily rituals of our making. Once in a while, members gather in pairs for things like sharing coffee or a shopping trip. Sometimes, like the day of this Hand-in-Hand Mother's Retreat, we group to grapple with issues that are best understood by other moms like us. We don't have to use a lot of words to exchange information. Glances, smiles, and sighs often suffice. Tears tell more than stories, but we like to hear stories - even small pieces of what life as a "special" mom is like for someone just a bit like us. The stories validate what we hope is true: We are not alone.

Prior to this retreat, I learned that one of the moms who planned to attend had been a youth in the church where Mark and I served as youth ministers when Stross was born. Nearly two decades later, Heidi became the mother of a special needs child herself. Now as then, her beauty radiates from the inside out and back again. Her son, Sully, is growing up with a mom well-acquainted with unconditional love and dedicated to providing him the best life possible. But that's what moms do, isn't it? That's what makes every mom "special" and what leaves moms of special needs children wondering why many in the world-at-large believe this type of "specialness" lies outside the parameters of conventional exceptionalism.

I know I don't want think about what makes my life circumstances "special" at the end of any given day. I just want a restful night's sleep and a chance to dream of things I might have forgotten I ever wanted in the first place. I believe this is true for moms of all shapes, faiths and sizes. I believe this desire to freely dream is also true for women who never became moms and maybe never will.

Happy Mother's Day to all women everywhere. May we always feel special simply because we are, and may each one of us love the children who come into our lives in unexpected but potentially enriching ways.

Saturday, May 5, 2012

The Day Life Changed

Happy Birthday, Stross.
You have planned quite a celebration for the first day of your 21st year.
As promised, your life has been "a wild ride."
I look forward to the twists and turns yet to come.
These are the only words I have today. 
I love you so much it hurts.
Mom
Missing Me - May 4, 2011
Stross-Your Birthday is Nearly Here - April 30, 2010

Tuesday, May 1, 2012

Weeding in the Rain

You would not regard what I did on Sunday as crazy if you understood how I think. I pulled weeds in the rain. Not a downpour or a thunderstorm (please, that would be crazy). Just some steady and effective weed pulling in a gentle, steady rain.

Normally I detest pulling weeds. I can think of few things that make me feel futile in the same way that ineffective weeding does. Digging around and then tugging at a pesky, ill-placed plant only to hold its top in my hand while its roots remain in the soil perturbs me. What an unholy annoyance. That is why it takes what I consider near-ideal conditions before I commune with Mother Earth in a weed pulling session.

Moist soil and cool air temperatures. That’s what I like; Sunday’s early afternoon forecast provided both criteria with the indication of rain later. Consequently, while Mark nestled down for an afternoon nap (an enticing option), I dressed in old jeans and a sweatshirt, put on Mark’s yard work shoes, found a pair of gloves, grabbed a paper grocery sack, and then headed to the garage for my favorite garden tool: a long-handled dandelion weeder. My goal was to finish weeding our flowerbeds before it rained, and I did. Sort of.

After emptying two sacks of weeds into our waste can – an amount that represented the two flowerbeds I had planned to tackle – I took a bathroom and water break. Standing upright let me know my body was not protesting as much as I had feared, so I allowed myself to contemplate conquering the worst weed offenders in our yard. Because I had been wildly successful at uprooting the wayward weeds near our house, I allowed myself to think about this loftier goal. Sunday’s conditions promised even greater success should I dare to tame the king of weeds: dandelions, a species so fierce that I have dealt with them by ignoring them. They have freely roamed through both our back and front yards, but on Sunday, I sensed my fierceness surpassed theirs.

Rain had made weeds slip out nearly whole, and the cool weather had kept mosquitoes, wasps and bees hidden away. My fight was on, but as I headed back outside, so was the rain.

Mark: (now awake from his nap) “Well, I guess you are done for the day.”

Me: “I don’t think so. It’s not much. I’ll be fine.”

Mark: “You have tomorrow.”

Me: “But I’m motivated today.”

Our backyard grows under the canopy of a maple tree and the long, sweeping dome of a willow. I focused my efforts on a rectangular section underneath the willow where the rain only felt like mist. With my head bowed to the task of my hands, no water drops hit my glasses, and my makeshift ponytail wicked any water off my head and onto the hood of the sweatshirt gathered at the nape of my neck. One by one, the dandelions left their dens, tossed into refuse.

Joy against wild. I was wet but still warm. I was winning.

I dug, pulled, and threw clusters aside, methodically moving within the boundaries of the canopy - two more soggy sacks of weeds, but then my neighbor pulled into his driveway. I looked up to see him looking at me. He had the benefit of a ball cap to deflect rain from his eyes. Water now splashed onto the lens of my eyeglasses. He blurred as I continued to look his direction; I felt the need to explain.

Me: (using as convincing a voice as possible) “This really isn’t as crazy as it looks. I know it’s raining, but not hard. It’s not so bad under the willow.”

Him: (from his location not under the willow) “Well, I wondered what the dogs were barking at earlier. They must have seen you.”

Me: “I just wanted to get rid of as many of these dandelions as possible. They pull so easy now.”

Him: (probably wondering why he’s talking to me long enough to get soaked himself now) “Yes, they probably are coming up pretty easy. Well … take care.”

I was beginning to realize how muddy and wet I was, but I wasn’t willing to quit not yet. My neighbor, perhaps giving in to his soaked condition, turned back for more conversation. He shared that he had just gotten a brew kit and his first batch of beer was about ready. Would we like some? Does Mark drink beer?

Me: “No, Mark doesn’t drink it, and neither do it. But thanks anyway.”

Him: “Just thought I’d offer.”

I had looked up long enough for my eyeglasses to become pooled with water. In fact, my forehead had taken a full hit of drops that had merged into streams and cascaded onto my eyelids. I had nothing dry enough to blot my eyes and could barely watch my neighbor turning to enter his house. When I lowered by head, attempting to resume my previously fierce attacks, I couldn’t blink the bleariness away.

I don’t know if I would have tried harder, because Mark’s voice demanded my attention. I looked up one more time. Mark now stood where my neighbor had moments earlier – only Mark held an umbrella and a posture that told me he meant business.

Mark: “What in the heck are you doing? You are soaked.”

A vague recollection of hearing the town’s clock tower strike five chimes shortly before I had talked with my neighbor helped me understand that Mark had been keeping track of time while I had not. I had been in the rain for more than two hours. While I had, at some point earlier, reassured him there was no thunder or lightning, I had neglected to hear the force of the rain become more intense.

Me: “It’s not been that bad really. I’m getting rid of these dandelions.”

Mark: “Don’t you think it’s time to come in?”

I wasn’t cold. I didn’t care about being muddy or wet. All I needed to do was to figure out how to see through my glasses and I’d still be good to go. I didn’t want to stop, but I knew I should. Mark was standing in the rain with an umbrella. He doesn’t like umbrellas.

Me: “Yes, I’ll come in. But I need to clean up first. I’ll come in. Promise.”

Mark: “You’ve done good work, Joy, but enough is enough.”

I left my most recent pile of pulled weeds on the sidewalk, but carried my weeding tool to the side of our home. While the rain was coming harder, it was no match for the force of the water spigot. A forceful rush pushed mud from my favorite tool and then I turned my feet into positions so it could do the same for Mark’s way-oversized-on-me work boots.

I loved watching the proof of my dirty work coming clean. I also loved having a husband who kept track of my best interests when I didn’t.

Why had I stayed out so long in such undesirable conditions? Many reasons.

Weeding was my chosen Sunday activity. The conditions had been favorable for me, and I had gotten swept up in my task. My opportunity to beat the dandelions – even if just for an afternoon – had come.

Besides, Mark had teased me about not doing yard work. He sometimes would intimate that I thought it was beneath me, but I know he knows better. He knows that I grew up working in my yard – a substantial piece of land that took the better part of a day to mow along with a garden to tend, bushes to trim at regular intervals and flowerbeds to plant and weed on every side of my childhood home. I was the oldest child of parents who grew up on farms. They didn’t use the word “chore.” There were expectations. Weeding on Sunday was my chance to remind Mark who he had married. A woman who doesn’t like to be beaten or quit.

There were other more muted reasons I kept pulling weeds. In the beginning, before the rain, a breeze would regularly waft the scent of Lilies of the Valley, a flower that makes me think of my Grandma Delma and Grandpa Fred. When I planted them at our home, I thought of my grandparents. Bunches of the tiny white bells used to grow by their home and my father had transplanted some to my childhood home also. They are hopeful signs of Spring for me. Each year I put some in a small green vase that once belonged to my Aunt Lynne. With each fragrant breeze, my grandparents and my aunt, while no longer alive, were present with me.

And there was the wind chime, toning the notes of a B-minor chord as it reminded me of my in-laws who possessed the chimes before us. Its random accompaniment was a constant while I worked until it wasn’t. It stopped once. When it did, I turned 180-degrees to see its wooden center swaying in circles but not hitting any chimes. It did this silent dance for a while. I’m not certain when it began to chime again, but it did. Meanwhile I kept thinking about family members – those no longer alive and those I hope remain with us as long as possible.

Yet the Lilies of the Valley and the chimes were all before the rain began to fall. For some reason I kept on even when most people would not. Mark knew I would. He also understood he would need to come find me when it really started to downpour. I am glad he did.

Weeding wasn’t the unholy annoyance I usually regard it to be on Sunday. Somehow I have the rain to thank for it.

Saturday, April 28, 2012

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.

Friday, April 13, 2012

His Hope Springs Eternal

Faithful readers know that one of my personal holy days is fast approaching: Stross’s birthday. As usual he began his countdown immediately after Easter. Actually, he began counting down the days to May 5 right after St. Patrick’s Day, but I told him I wasn’t ready to hear of it until after Easter. So, he counted quietly – but not privately – until this past week.

Part of Stross’s countdown ritual involves making a list of presents he would like to receive. Mr. Digital Savvy is a fierce online shopper who regularly sends me gift ideas. If the date on the calendar is between May 6 and December 24, the email subject line is about Christmas. If the date is between December 26 and May 4, the subject line is “My Birthday.”

Most interesting are the conversations about his plans for the big day. There is always a theme and always a need for pomp to go with his happy circumstance. When he turned 18, his special day was all about registering to vote and registering for the draft. This year he turns 21. You can imagine the plans he has in store. We have talked him down from a trip to Las Vegas. But I have a feeling if there isn’t at least one game of “21” happening for him sometime that day, he will feel cheated. Mark and I also know we will have to deal with that other rite of passage that so many 21-year-olds grab onto with fervor. My parents treated me to a classy dinner with cocktails. I hope something similar will suffice for him as well.

No one can grasp the magnitude of this annual celebration unless you spend time with Stross regularly. Birthday plans punctuate his daily life each Springtime with conversations sprouting like fragrant buds. This one happened this morning. I was driving him to an appointment, and he was seated in his spot in our van – middle seat, passenger side.

S: Hey, Mom, did you get the email I sent you today with the birthday gift I want?

J: Yes. I saw the link, but I did not open it. What is it?

S: A video set. "The Adventures of Sinbad."

J: You have already sent me a lot of links for gifts to buy, and you know that I have bought some already. How many gifts do you think you should get for your birthday?

S: 21.

J: Oh, really?

S: I will be 21, so ...

J: One for each year, huh?

S: Umhum. (His smile can be heard in his hum.)

J: (pause, then) So, will you get me 48 presents this year?

S: (pause) Oh, crap...

J: (smiles that her point was seemingly made)

S: (a bit longer pause than before, then a breathe of resolve) So, Momma, do you think we can try that sometime?

Ah, Stross. The wonder of him; the eternal hopefulness that eeks from every cell of his being.

He will not be getting 21 presents from us this year. But no matter how long his life, I am certain that he will continue to lobby for new ways to celebrate and new gifts that he “really needs. I do, Momma. Come on … ”

Oh, Stross. What will we do with you? What would we do without you? In all times, in all places, in all days, in all ways: Celebrate life!

Wednesday, April 11, 2012

Amid the Easter Lilies

I greeted familiar faces when entering my hometown congregation with my parents, husband and children on Easter Sunday. Then I read familiar names on the listing of lily memorials. This year the display of lilies looked nearly identical to displays of Easters past; its accompanying list read like a roll call of those I remembered filling the sanctuary when I was a child, then youth, and finally, a young woman.

The list testified to my kindred status. Of the 32 memorials on the lily list, I knew 26 of the individuals who were being memorialized or the people who had given a lily in remembrance. I was in a place where I was known. The members of this congregation helped host my confirmation and marriage celebrations. In an authentic way, I am known by them as surely as those on the Easter lily memorial list are now fully known.

Flowers for the faithful. A great cloud of witnesses.

Beyond the floral tribute, the hymns that outlined my Easter Sunday service walked me through a faith life that has, at times, been buried and then raised again in a newer version of life.

“Christ the Lord is Risen Today,” surely this hymn is sung on Easter Sunday in every congregation that expresses belief in a crucified and risen savior called Jesus, the Christ. I cannot remember an Easter Sunday that did not have this hymn as part of its soundtrack. I cannot imagine an Easter Sunday without it.

“Lord of All Hopefulness,” a hymn that shares the same tune as “Be Thou My Vision.” The earliest “vision” version became my favorite hymn when I was just a girl of 12 or 13, brimming with self-assurance and aspirations yet old enough to recognize a need for divine focus. I understood I needed to temper my tendency for selfish ambition. Divine vision is what I longed for and is still what I need. As for the later “hopefulness” version, I discovered it while attending the Lutheran college that shaped my recognition of what it meant to live out a vocational calling. This version reassured me that divine vision was as close as the break of my day, the noon of my day, the eve of my day and even the end of my day. Best of all, hopefulness and joy go hand-in-hand in this version. Blessed assurance, indeed.

“Beautiful Savior” is the hymn lovingly recalled by alumni of the choir associated with the college that I have been affiliated with the majority of my adult life. Because it strikes such deep emotional chords with those who have shaped the institution, it now bears significance for me as well. It is a legacy hymn, sung by generations who continue to sing it with longing and love.

“He Lives.” I heard my father-in-law’s voice singing this hymn within seconds of its opening notes. Its bouncy melody calls for an echo, reminding me of visits to the congregation of my husband’s earlier years where men enjoyed providing the refrain in low, reverberating tones. The tune elicits memories for my husband that do not match my memories. We, as unique creations, entertain unique responses with a Creator to whom we are individually known.

The meaning of Easter is colored in hues that span the breadth and depth of life’s spectrum. This year I was reminded who I am and to whom I belong. I am different from the girl who first looked upon displays of Easter lilies, wondering. I now look upon them with wonder. I live an Easter life filled with hope and joy. That is my vision at the end of this day.

Monday, March 26, 2012

Like Sinew Torn from Bone

11 You clothed me with skin and flesh, and knit me together with bones and sinews. 12 You have granted me life and steadfast love, and your care has preserved my spirit. Job 10:11-12 (NRSV)

The look I saw on his face brought forth an image of sinew being torn from bone. Yet the ripping I felt was my heart.

I am not yet fully healed. I wonder when I will be, for I can still see Stross’ face, and I am still wrestling with the emotion exposed in that moment.

And so, I write.

Mark’s and my conversation – if we pretend to call it that – flirted with fears for our future. Our sons didn’t want to hear what we were talking about, nor should they have had to. Unfortunately for Stross and Skye, their parents are poor at hiding feelings. Clarification: Their mother is poor at it; their father is often a victim of her circumstance.

All four of us were in the same room when I felt challenged, and when challenged, I attack: “Stop implying I am not happy and that this is about me. Stross and I have developed a pattern to our days. We are falling into a routine, and I am figuring it out. My job is to accommodate his needs right now. I get that. Stross and I are getting it done. It is what it is. Stross is happy. I am happy. So back off.”

My forceful assertion was met with equally decisive opposition. Simultaneously, Mark and Skye, who in that moment chose to go from a bystander to a participant in his parents’ conflict, snapped their heads my direction and said in near unison, “You’re not happy.”

Stunned, I looked at Stross; he looked at me. My maternal instinct screamed in silent horror. I could not protect him from what he had heard and might now believe. I read his mind through his eyes. He was torn. His idea of who his mother was had been knocked askew by the suggestion of an alternative reality: Mom wasn’t happy? Mom’s happiness depended on him?

Flesh of my flesh. Sinew torn from bone.

I have only witnessed the expression Stross had on his face one other time. Several years ago during a medical consultation, a doctor had carelessly begun using the “s-word” (surgery) without regard to Stross’ impressionable presence. We had not asked about a surgical solution to Stross’ medical condition, but the doctor had felt the need to offer one. Immediately after the word was uttered, Stross, the survivor of more than a dozen surgeries, looked directly at me: betrayal. Had we tricked him? Had we not told him what this appointment was really about?

That day I had offered him an immediate, decisive response. My reassurance had been swift, even scolding the doctor for having been so careless. I had been Stross’ protector and comforter. He had no doubt he was safe. He could trust me, his mother.

But now … could he trust me now? I wanted to offer him immediate reassurance, but I was still reeling from the accusation. My soul’s mate and my other son did not believe I was happy. I could not begin to sort through the implications of that charge.

So I simply looked back at Stross while he looked at me. What was my man-boy thinking? Intellectually, he can converse as an 11- or 12-year-old might, but his problem-solving abilities are forever locked at a 7-year-old’s level. What must he think about his mother and her happiness and how she spends her days aligned with his? What are the implications for him?

“You’re not happy.”

The words had been sharp, cutting. The separation of sinew and bone had been severe enough I could not even limp to Stross’ rescue. I held off tears while his head lowered and his eyes looked over the top of his glasses, darting around the room and assessing each of us. He sat alone, looking alone. His hands kept each other company in his lap with one set of fingers nervously picking at the other.

Mark and Skye seemed oblivious to his anxiety. I wanted to say something, but I could only shake my head in an attempt to shake off what had just happened. Finally, the urge to strike back returned.

“How dare you. How dare you make Stross think I am not happy spending time with him.”

Then the episode ended as family conflicts often do. Silence filled the room and I took my negative energy into another area of our home so I would stop hurting the people I love most in this world, and they could not hurt me anymore.

Mark and Skye had drawn my attention to a topic I wanted to avoid – a topic only I had the power to change, but first I needed to find my way back to Stross, a powerful life force who serves as a mirror for my soul.

Hours later as he lay in bed watching a video on his iPod before turning his lights off for the night, I positioned my body next to his and we hugged. I told him I loved him and that I liked spending time with him. We reminded each other of fun times we’d shared, and he included the story of when he came to the Iowa State Capitol with me to have lunch with the then Lt. Governor. He was 2-years-old at the time, so it is a story he knows more as family narrative than memory.

We had been a family in transition then, moving from Des Moines to the life we now live. Mark had been our family’s primary care provider up to that point. Then, for three weeks, I lived in one city while Mark began a life for us in another. That is when we swapped roles and I became our family’s primary care provider, a responsibility I carry to this day – technically. Stross, now 20, is quite able to take care of most of his special needs unassisted but, unfortunately, not all. Mark and I share responsibility for the rest, while I continue to be the one on-call. The classroom aid. The job coach. The life skills teacher. The mom.

The anniversary of Stross’ birth is approaching. This personal holy day is only five weeks away, and this year I have homework to do before it arrives. I must attempt to answer this question: Am I happy? If I can’t get that answered, I won’t be able to conduct my annual motherhood performance review in the manner Stross (or Mark and Skye) deserves.

Am I happy?

I can feel the healing beginning simply because I have allowed myself to ask the question. Only I have the answer.
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Tuesday, March 6, 2012

The Story of Silence

I am intrigued by silence that sits in a room, tempting me to determine why it’s there.

I believe every silence holds a story. Some discover the plot by listening and observing, while I can’t resist the investigative approach. I want to prick the silence and see what oozes. Even in the most benign situation, the process can be healing or hurtful. I don’t believe there is an in-between.

In my family, silences are few. Growing up, when hot silence occurred, I wondered what topic had begun the argument that had fizzled my parents’ fumes. In the family for which I serve as the matriarch, I never wonder. The topics that push our marital hot buttons are mine to choose or to accept as a challenge.

Then there is cool silence – the kind that exists between strangers. My parents practiced a narrow definition for “stranger.” Dining in a restaurant, sitting in a waiting room, or walking through museums and state parks, I witnessed conversations go from who-are-you to we’ll-try-to-look-you-up-next-time-we-are-through in mere minutes. Equal parts horror and fascination motivated me to remind my parents – as often as I was able - that it wasn’t necessary to include family details in conversations with people we hardly knew.

Their powers of discernment must be strong, however, for I cannot think of a negative experience that resulted from their approach of sharing our lives with strangers. Yet.

My relationship with silence was shaped by my parents’ avoidance of it. Something was always being discussed in the home of my upbringing. If not, music was playing on our stereo. On paper grading days, my father would stack 1-2 inches of 45s or a half-inch of long-play albums to create a soundtrack for his morning or afternoon teaching task. His soundtrack then became mine as well.

My father is the reason I know all the words to Connie Francis’ “Where the Boys Are” and every lyric to every song on the “Jesus Christ Superstar” soundtrack. He is also why I can sing through Helen Reddy’s “I Am Woman” album. My father, who is charmingly tone deaf to notes above middle C, set my life to music long before I understood who I was. It may be part of why I am who I am.

Then there is this: My parents are both storytellers – independently of one another, but in their most stellar form, simultaneously. One will begin a story while the other fills in words, corrects facts, and then adds commentary or observation before, ultimately, sharing in the outcome of the story’s conclusion. With them, more is more. No detail is left behind.

I have witnessed few couples able to navigate to the level tale telling that my parents have achieved. I think of it as interruptus-augmentative. The fact they drive some listeners crazy is a given. Yet, even their most annoyed listeners agree their conversational art form is spectacular to behold – like a train wreck in slow motion or the laborious, intentional strokes of a classical artist.

I am aware that I practice a solo form of this method, interrupting myself to add details that have flicked into my stream-of-consciousness. Bits of memory arrive tardy but important. Could I leave them unsaid? Certainly. Yet am I compelled to embellish, for I am a product of my upbringing. I have learned that someone cares, someone wants to know it.

More is more. Remember. Until it is not.

My family is also the first to demand I get to my point. So sometimes I simply talk faster. If the desire is to be heard, succinctness isn’t a friend. Few words carefully chosen do nothing for listeners who – by demanding the point be gotten to –allow little time or credence for what is being shared. I learned to spew words out anyway. If someone isn’t really listening, why not at least get the words out?

For one critical reason: Listeners may be less likely to listen the next time.

But if that proves true, why seek an audience with them again?

Relationship.

Humans are relational. Words mixed with silence are how we communicate. Actions – or a lack of action in the silent spaces – speak as well. A smile with words, a simple a smile, or no smile at all. Sitting next to someone and choosing to greet one another or simply sitting. The choice itself communicates.

I want to be better at silence. I want to hear what it tells me about others, but mostly I want to hear what I am saying to myself in a language only I can hear. I want to hear a story that is mine to tell then determine the best way to share it. Right now I am sitting with the silence, but soon I will prick it and see what oozes. I will likely tell more details than most people would. I will also, mostly likely, hear the soundtrack of my life as I work.

“I know too much to go back and pretend. … Yes, I am wise, but it’s wisdom born of pain. Yes, I’ve paid the price. But look how much I’ve gained. If I have to, I can do anything at all. I am strong. I am invincible. I am woman.”

Saturday, February 25, 2012

Uncommon Talent - the Gift of Gabe Vasquez

Gabe Vasquez does not comprehend how uncommonly talented he is. I believe he knows he's talented, but I don't think he understands how his particular brand of talent is extremely rare - at least in Iowa and, really, most other parts of the world.

While Gabe is a college student by day, he is an artist all the time, for it isn't possible to abandon artistic abilities, either willingly or on a whim. An artist is who a person is, not what he or she creates.
Gabe is an artist; his muse speaks through graffiti art. Gabe can see an image in his mind and then spray a spectrum of hues on a wall to bring his vision to life. Vivid, vibrant, intense, captivating.

I had heard of Gabe before but did not meet him until tonight. I listened as he told about coming from El Paso to Waldorf College as a business major and how - after a few semesters - he realized he needed to change majors. I heard him acknowledge that painting is his passion, and I sensed that he is never happier than when he has a can of spray paint in his can, bringing a small, rough sketch to life in super-sized proportions.

A wrestler, Gabe is familiar with the struggle of pinning a human to a mat. The give and take of those matches is shaped by pairing competitors of similar weight. However, when facing an unadorned wall that awaits transformation, Gabe's struggle is his alone. The give and take occurs inside himself. Only he can bring forth what is held in his mind. Only he can chose the colors and then wave strokes of brilliance into patterns, effectively pinning paint to the wall.

I hope Gabe doesn't end up in a career directly tied to any major he receives at college. After he earns his degree, I hope Gabe finds a way to follow his passion - to create art with the capacity to transform lives. If that's what happens, his college days will have been well spent.
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Thanks, Mark Newcom, for teaching in a way that makes this kind of learning possible. I learned a lot tonight. I can only imagine the other lessons happening along the way.

Wednesday, February 22, 2012

A Ticket to All-State

My youngest son, Skye, is beginning to understand something I learned three decades prior. There’s a system to cracking the system, and it isn’t easy to learn.

One week ago, after yet another long week of waiting, he found out he still has not earned a ticket to All-State Speech. And this time it had felt so close. His group mime coach and fellow performers felt it. We felt it too – his parents, his aunt and his maternal grandparents. (The last three relatives are even seasoned speech judges.)

But on February 12 he learned for certain: He would not go to the 2012 All-State Performances – the apex of accomplishment for a large group speech season that is four months in the making. He has also never made it to All-State as an individual contestant despite having earned his way to state contest in more than one speech category in multiple years.

Unfortunately, All-State Music auditions have not brought such fortune, either. Skye, who has an intriguingly appealing voice, has gained vocal depth and dexterity every year but has not been selected for the All-State Chorus three years running. I hope he gives it one more try this Fall. If he misses then, too, he will have matched my own record of musical misses: 4 years but never picked.

In the face of this most recent speech contest rejection, I offered perspective: He has substantially outpaced my meager number of trips to state contests - two. Skye, in contrast, has always made it through districts and onto state – always – and he achieved resounding success as a freshman while I never knew I had thespian muscles until my junior year.

But I am aware the perspective I offer him also comes with a caveat. I got to All-State my first time out of the gate and even helped bring home the state’s highest honor: a critic’s choice banner for one-act play. Yet I would never have competed if not for Mrs. Diane Johnston, or DJ, as we students called her. DJ was my sophomore English teacher and our school’s drama coach. She had chased All-State honors for many decades, and during my junior year, she invited me and seven other students to perform an unconventional piece called “America Hurrah.” She is the reason I learned what it means to catch lightning in a bottle.

While our group competed in the one-act category, the selection was part choral reading and part mime with our acting abilities holding the thing together. We didn't have a set, and we didn’t wear costumes but color-coded ensembles – either a black top with white pants or white top with black pants. Plus, rather than a story with a beginning, middle and end, the play was a set of individuals scenes that required one of us to take center stage while the other seven served as a supportive ensemble of characters or, in some scenes, furniture and props. All eight of us were on stage at all times, moving from one of our characters or roles into the next without ever dropping one of our assigned personas. My favorite supportive role was being part of a system of telephone wires that was transmitting signals across the stage; my second favorite was being a fish out of water.

As for my turn at center stage, I played a woman lost on 14th Street. Others in our cast were featured in scenes about a political candidate, a physical trainer, a telephone operator, a woman at a party, and three others I no longer remember. I’m not even confident the individual scenes shared a unifying theme. Our one-act play was that unconventional.

The fact that we were named the best in the state of Iowa that year – 1981 – vindicated DJ’s daring choice. Either that or the judge, feeling conflicted about what she had witnessed, had nobly chosen to embrace its bizarre experience. How we attained that title does not matter. It was ours and forever will be.

That was my introduction to the world of high school speech competitions, and nothing ever matched that accomplishment. During my remaining 15-months of high school, I enjoyed a handful of other pinnacle moments, yet that experience was unmatched. It wasn’t better than other experiences in a quantifiable way other than the title and accompanying banner that our school got to hang for one year. Yet it forever will be incomparable.

The eight of us in that one-act play – four juniors and four seniors – had become an ensemble. We had learned to be spatially aware of one another, moving to fill holes as quickly as they were created. We had spoken with precision timing, too, picking up cues like the sweeping minute hand of a fine Swiss timepiece. I remember concluding our piece in Des Moines that day, knowing that we could not have performed it better; we all felt the same.

That’s what I hope for Skye: an experience he regards as incomparable because it lets him know he is capable of more than he suspected. And I hope he gets the chance to work with a team of individuals who others not only point to as outstanding but are awarded for their work with a banner or trophy or trinket that publicly affirms what they have believed all along. They are the best.

Life is not measured in number of awards won. I know that; Skye knows that. Everyone knows that, right? Life doesn’t even ensure that those who are the best will be the ones going home with the awards. Judging is subjective; and when groups are being judged, weak performers can either bring a whole group down or get swept along to victory with the team. That’s just the way awards get awarded.

But I have a feeling that every Golden Globe or Grammy or Emmy or Tony or Academy Award winner agrees that those shiny trinkets can certainly brighten a person’s outlook. I am pretty sure All-State honorees feel the same.

If at the end of his high school career such an honor should continue to elude him, Skye won’t crumble. Neither will the hundreds of thousands of other high schoolers in our fine state who have and will graduate without the boasting rights to such an honor. In fact, maybe they are the more fortunate ones. Perhaps they live with a forward-leaning perspective that fixes their pinnacle moment securely in the future, while early award winners fight the anxiety of what-can-I-do-to-top-myself-now. This is certain: Once the entrapments of adulthood take hold, awards ceremonies and public recognitions of excellence are rare. The manufactured glory of high school is not easily reproduced.

I admire Skye. I admire his creativity, his tenacity, his charity and his ability. In so many ways, he is a coveted award, just not one I did anything to earn. He is incredible, and he is my son; I am certain I could not have done any better.

Skye is the best Skye he can be. Bravo! Encore! Encore!
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Tuesday, February 14, 2012

My Valentine

Today I shared the story of my storybook romance. They listened kindly as I told how my eyes met his across a grand piano during our first rehearsal as singing waiters. How it was my 20th birthday, and I spent the next few days thinking about the boy from Waterloo with the brilliant smile – the one whose last name I could not remember. I just knew he was Mark, the kind, smiley guy who – unlike the other seven of us – attended a different college.

Who made the first move, they asked?

I’m not really sure, I answered.

They didn’t believe me, so I continue to tell our tale. They could decide.

Sometime that fall he began bussing my tables. Then he asked if I would take the drink orders for his tables because he found it morally reprehensible. I agreed, but not without challenging him.

“Isn’t that hypocritical?” I asked. “You agreed to take a job that you are not actually doing. I am doing it for you at your request. How does that make it better?”

He was a singing waiter, I reminded him. A job that was 50 percent music and 50 percent customer service. Our octet shared gratuities, and we wanted the income from his bar tabs too. I didn't drink alcohol either, but I kept taking the drink orders. It was my job. He kept bussing my tables. He thought I flirted with all the male singers but him. I thought I was joking around, and that he didn’t joke.

Soon he began driving me home after work, and we began discussing issues important to us. I wanted to know why he believed women couldn’t be pastors, and he wanted to know why I thought I could claim to be a child of God.

I wondered if he would attend a dance with me.

He wondered if I would attend church with him.

During a break at one of our special Christmas shows, we sat at a table drinking coffee. I told him I was in love with his voice (it’s all I yet dared to love). He wondered privately if I had considered loving the rest of him too.

After our New Year’s Eve dinner show, he drove me to his home to spend the night, waiting for a snowstorm to pass. We talked by his fireplace until 4 a.m., his little brother a tired chaperone on the couch. I watched him carry his sleeping brother upstairs, helping him into bed. Then I watched him ready his own bedroom for me. Later, unaware only three hours had passed, I wandered downstairs to keep his father company as he mopped their kitchen floor. It was 7 a.m.; no one else was awake.

“Good morning.” I announced myself to his father, the owner of the house.

“Well, hello. Have a seat in our dining room while I finish in here. Can I get you a cup of coffee and some toast?”

“Umm, sure.”

We shared the smallest of small talk. But then I wanted to know: “If you don’t mind my asking, why are you mopping the floor at 7 a.m. on New Year’s Day?”

“Well,” he started slowly, pensively. “I promised Carolyn Ann I would mop the kitchen floor, and I thought it would be good to start my year off right.”

Ah, I thought. This Mark, this 6-foot boy with the beautiful smile, comes from very good stock.

The next week I was attending classes at my college again, but he was waiting for classes to begin at his. On Thursday of that first week of the year, I stood beside my Lutheran campus pastor, fulfilling my duties as the chapel cantor. The first time I looked into the congregation from behind the altar I saw him – a Southern Baptist boy – sitting in a row near the front. His hymnal was open, and he was following the service as best he could. Afterward he met me in the hallway with two questions: Do you have time before your next class? (Yes) What is this thing about the holy uterus, does it have something to do with Mary? (Laughter.)

"Holy Eucharist, you mean?" His embarrassment. Our commitment to continue figuring each other out.

There had been no kissing. There still wouldn’t be. Just more talks – debates really – about God, life, salvation, churches, families. We lacked agreement on many things, but we shared something more that surpassed all else. We laughed together. Joyfully. Had fun together. Willingly. We cared about things together. Deeply. We questioned things. Sincerely.

And then Valentine’s Day. A dozen roses delivered with a card that read: “Friends are friends forever.” I knew how the phrase should end. He sang it every night that we worked at the restaurant. This time it was for me.

One day later another of our dinner shows. The day after that a dance, a Mardi Gras Dance. And he danced, this Baptist boy. He was surprised I was surprised he would. I was surprised when he left the dance floor because a song with "questionable lyrics" was playing. But then the music slowed. We returned to the dance floor. He pulled me close. Tight. And REO Speedwagon described the predicament we faced. We couldn’t fight the feelings any more, or remember what we had started fighting them for. He made sure his eyes found mine as the song played. They locked on and didn’t let go even as the song ended.

We walked off the floor together, closer than hand-in-hand. Later his lips found mine – finally – and we said good night in the stairwell of my dormitory, only hours away from morning.

What had we done? What had begun?

I could not have known then but I certainly know now – 27 years later. That night I began to share my days more fully with my soul’s partner. Someone I could trust with my life. My love.

He is my Valentine.
I am forever his.
He is forever mine.

Happy Valentine’s Day, Mark. I love you.