Sunday, January 20, 2013

Holy kisses

Last night, we began watching Tim Burton’s “Alice in Wonderland” while eating our pizza, knowing Skye would only enjoy the first part of the movie with us. Nearly all the extra-cheesy pizza slices - sausage and pepperoni - had been devoured when he jumped to his feet and quickly covered the length of the ramped hallway that leads to his and Stross's bedroom. He needed to collect his wallet and whatever else he thought he might want in order to enjoy the rest of his night.

A few friends who were home from college had already arrived and a few more college friends were on their way. A van-full - more like our van filled - needed to leave soon if they were to catch the opening moments of whatever movie was scheduled to start prior to 7 p.m. The choice of movie didn't matter. The night's schedule and companionship did. 

While Skye checked his hair in the bathroom mirror and reapplied a smooth-smelling layer of Axe Excite, the remaining three of us - Stross, Mark and me - continued to sit on the floor in our self-assigned spots around a lavender-flowered vinyl table cloth. For more years than I can correctly recount, either that cloth or its purple-and-white checkered cousin has helped protect the plush beige carpeting of The Big Room. It defines the space we use for our Family Friday Pizza Picnic, a weekly communion of breading, sauce and soft drinks. 

Regardless of season The Big Room is always warm. In cold months, the heat of our fireplace permeates memories of paper-strewn Christmases after the boys have slept feet-to-head on our over-sized sectional, sleepovers where other families' sons have joined ours to sleep the same way, movie nights with only the light from our television and the world’s moon shining through a wall of windows, and game nights when the room itself has become home base.   

As Mark leaned against the slate of the fireplace ledge and Stross leaned against the cushioned checkered footrest of the chaise lounge, I watched from the purple footstool. Skye, his prepping complete, strode back to us. He cruised down the contoured angle of the ramp until coming to its platform intersection where - had he turned and continued following it - he could have gone directly to the garage door and the van of waiting friends. Instead, he stepped down and walked toward me on the purple stool. Leaning down, he softly kissed the snow-colored top of my head.

"Mhmmm ... I love you. I will miss you when I'm at college." The sound of his introductory sigh prefaced pure and unguarded emotion.

Drink this moment in, Joy. Do not let it go.

I watched him turn 90-degrees to the left and move to Mark. Leaning down, his lips found the top of Mark's dark-haired head. Mark closed his eyes and consumed the same gift I had received. 

"I love you, Dad. I'll miss you."

Before the words had finished being spoken - before Mark could respond with "I love you, too" - Stross raised his chin and extended the trunk of his body toward the ceiling. He stretched as tall as he could make his body while still seated on the floor. His Cheshire-smile face invited attention, and Skye rewarded him with a pivot his direction and a kiss at the top of his forehead.

"Mhmmm ... I love you, Stross. I'll miss you next year."

While never spoken, I heard the whisper of Dorothy to the Tin Man as Skye brushed his fingers through his brother’s ash-brown hair: “I think I’ll miss you most of all.”   

“I love you, too, Bro-bro,” Stross chirped, adding a satisfied purr. “Hmmmm.”

The sound of Stross’ contentment matched the delicious preface of Skye’s holy kisses. “Mhmmmm. I love you,” he had told us, and then he was gone – out the door and into the driver’s seat, sharing a journey with friends who have already traveled the path he will soon take.

It’s happening – just the way it should and just the way I hoped it would – even if it hurts.

Three kisses.

Holy kisses.

Blessings that hold you close and never let go even when the one who blessed you has gone.

Mhmmmmm … I love him.

Wednesday, January 16, 2013

Burning the Misplaced Pieces of the Past

Not long after Mark and I were engaged, I began to think about our love story, the one we would tell our children. We would share details that make all epic stories come to life: how we met as singing waiters our junior year of college, and how he compelled me to take his drink orders because it was against his moral code - a code I challenged him to find a cogent and systematic thought process to use for his defense. We would also share how he voluntarily bused my tables prior to driving me back to my dorm each weekend night in his white Honda Civic and how we carried take-home containers of chocolate truffe mousse to my room to share. We would even - maybe - confess how he stayed right up to (and even past some nights) the dormitory's visitation hours.

From courtship through engagement, the story of our early romance would convey to our yet unconceived children how our love surpassed all other stories of romance that might have been written for each of us had we not dared to take a chance on dating a type of person we never expected to meet.

I also wanted to safeguard our story from mythology - illusions about our romance or romances we had abandoned along with the romancers who had abandoned us. I wanted our children to know only of our misgivings and mistakes. Our love had not bloomed without rainy days. We had even endured a storm only weeks prior to our engagement. But bloom, it did, even surviving harsh seasons. The hardiest perennials do. Our children would need to know that.

They would need to know that the first bloom appeared about 29 years ago, back when I worried about notes, other love letters written by other suitors, being found by future children. Those scraps of paper outlined stories that should never be told, I believed. Not if Mark and I were to commit ourselves only to each other. We were collaborators of an epic saga, a saga that would birth beautiful children who would know only of the love that bore them.

Therefore, the other love notes had to be burned. No misplaced pieces of our separate pasts should supplant our storyline.

Our tale of love had begun to weave its way from the Chalet Room at Carver's Restaurant, and it deserved a clear path to the lively retirement abode we would choose for our most golden and final years. Our children should never doubt the wisdom we had exercised in our early 20s when we chose to travel a complex but unified path together. "Wisdom" and "early 20s." Could there be such a combination? If so, we needed to affirm it. Protect it. We needed to burn the notes.

Still, what if the relationship that our children would see in the future didn't live as vividly for them as any colorful tales they might freely concoct? Perhaps not having other notes would not matter. Even if evidence did not exist, vividly imagined details could be invented - by them, if not us. What if some mythological storyline - crafted even without the aid of rejected love notes - could unseat our real life story anyway?

Until our children could write the toughest chapters of their own hearts' tales, they could comprehend love. Not really. 

Love - sustaining love - is nurtured through careers and children and broken dreams and dream vacations and experimental vocations and heartaches and midlife crises and ordinary days of non-crises and retirement and, well, things I cannot know of either - not yet anyway. My great love story is far from over, and while I have witnessed other great loves, their endings have not been well documented - not as well as their beginnings. Perhaps endings are so intensely personal, so poignant and full, they cannot be wholly shared. Or maybe the greatest love stories have no endings because they do not end. What a merciful thought.

That is why those other notes - puzzle pieces of unseasoned passion - had to be burned; they were burned, turned into ash that matched the relationships that bore them. Our children cannot resurrect them. Neither can we.

Mark destroyed his on a day and in a manner of his choosing before I had a chance to add mine to his pile. Fitting perhaps, for we had collected them separately; separately they turned into ash.  I am grateful their embers flamed the fire that has warmed us for nearly three decades. Those relationships mattered too.

Today I took out the collection of love letters that survived those years - Mark's cards and hand-written pages to me during our courtship. I read one. Then one more. Still another. I read in search of me and the man I chose to marry. Can we really be found in the words of those love epistles? They are now as mysterious to me as they will be to our children one day when they find them. Hidden in plain sight.

I don't need to read them to recall who I married. According to those love letters, that man does not exist anymore anyway.

Anytime I need to recall the story of my life's great love, I will simply walk into my kitchen at dinner time. He will be standing near the stove, either cooking the evening meal for our family or insisting on helping me do the same. And when our family meal has ended, he'll help me bus our table - plates and glasses into the dishwater, pots and pans washed in the sink. There will be no need for him to drive me home. We will already be there. Our sons have seen that part of our story many times. That might be all they really need to know.    

_______________________

Note: The poem that sparked my thinking is "His Elderly Father as a Young Man" by Leo Dangel. I would post it here for you to enjoy as well but do want to commit copyright infringement. I encourage you to find it in Home from the Field, © Spoon River Poetry Press, 1997.



Friday, January 4, 2013

Back to Some Beginning

Stross declared his desire to participate in No Shave November using no uncertain terms; nothing I said convinced him to change his mind nor should it have. He's a man of 21. Even though he needs Mark's or my assistance to shave his face, he can - on his own - determine he does not want his face shaved. Therefore, No Shave November meant Stross got to show his cousins his Elvis-style mutton chops during the Thanksgiving holiday. But the month is long gone and so are his over-sized sideburns.

Without declaration, I seem to have declared the past two months No Share November and Not Talking December. I have not written anything to share here since mid-October. Not a believer in writer's block, I interpret this reality as a symptom of something else. But what?

I have held too many professional jobs where writing simply had to happen - deadlines be damned – to believe in writer’s block. News releases, articles that complete a newsletter, word blurbs that fill awkward spaces in a magazine layout, letters and memos that outline important details - these can all occur when a writer lacks clever thoughts. He or she must simply strive for lucid elucidation.

(Yes, that phrase is redundant, but I like that adjective-noun pairing today, so deal.)

Putting pen to paper or fingers to a keyboard is a mechanical step that makes things happen. Most writing happens by formula. In fact, all writing can happen by formula. A writer

- decides on an objective for a piece,

- selects an idea or angle to shape the piece,

- chooses some nouns and verbs to shape sentences, and then

- adds phrases capable of moving readers from one sentence to the next.

The process repeats from paragraph to paragraph or bullet point to bullet point until the piece is done. If time allows, a writer or editor can shape it better; if not, a writer will send the piece out trusting her spell checker and editing software didn't fail. The greatest hope is that she didn’t bury or mask her lead.

Masterful writing is something else entirely. To claim writer's block while waiting for something regarded as a masterpiece is the equivalent of waiting for an extra paycheck to arrive just because. The best you can wish for is something that feels insightful to flit through your mind accompanied by words that fit the contours of those thoughts. When such a phenomena happens to me, I try to capture the thoughts as scant notations before they vanish as vapor. It doesn't take much for inspiration to dissipate. Distractions. Tasks weighted with priority. Doubt. Time. Choosing to do something with those notations takes energy and purpose. I have files filled with unfilled purpose.

So what has kept me from writing? I am not waiting on a masterpiece; I do not credit a particular excuse. In fact, in my first draft of this post, I outlined why each excuse lacked worth. But a reader doesn’t care about that. A reader has ample excuses of his or her own to analyze (or not) between missed moments that fall as broken links - disconnections that release opportunities to enrich life.

I have only written this post today because I had to. I forced myself to put finger to keyboard to make something happen. In this new year, I sense an approaching crossroad. I can either continue on a path that has become increasingly isolated or make myself turn onto a road more traveled.

I guess there is one more option. I can forge a new road.

While I have never regarded myself as a trailblazer, I am familiar with feelings inherit to the task of cutting tracks for others to follow. That can be lonely too. Often I have turned around to find that no one has followed. Not right away. Sometimes not at all.

Yet, that does not matter, does it? For I was never lost, never bored, never forsaken.

I guess I am back to some beginning that I wandered from some time ago. It doesn’t matter how long ago my wandering occurred. Indeed, I am not certain I could determine the demarcation. I only wonder where I am to go now and how I might get there. Somehow I need my fingers to lead the way.

There are worse places I could find myself.

I am not lost - just on a road yet known.

At the risk of stating something obvious: I don’t know where I am going. I am, however, confident I will recognize my destination when I get there.

. . .

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.