Turning the Corner

“I’m not ready to declare victory, but I’m winning some battles.”

As rapidly as Rich declined into sightlessness, his ascent back into the world is a meteoric rise.  Thanks to modern medicine, each day brings progress.  Every venture outside breeds success.  The botox treatment that generally requires a week to take effect has been delivering mounting victories each successive day.

That magic formula is restoring a lot more than sight.

I feel like I am coming up from underground.  The past few months have been consumed by this drama, bringing isolation as well as despair.  Dealing with the realities of Rich’s condition was all consuming.  A single focus, particularly for him, but dribbling over into my existence.  Life on hold.

This week is like re-emerging in the spring and rediscovering the outside world.  As Rich begins to push his boundaries again, so do I.  He is able to go for walks in the woods.  I can return to my writing, believing he will be safe.  He takes the car keys and ventures over to Superior to spot two snowy owls with his own eyes.  I treat myself to a movie with a friend. He meets a fellow birder for a morning in the Bog.  I hunker down in the coffee shop with my laptop.  Every small step feels like liberty.

How well I remember my days in the hospital, after delivering each of our three babies.  The insulating environment of that sterile room, devoid of external influence, the absence of outside news.  All that mattered was the precious new life that lay in my arms.  The miracle that depended on me.  That slept, fed, cried and squirmed as I looked on.  The world beyond my room did not exist.

At times this fall, our house felt the same way.  Our lives – and our fears – were confined within its boundaries.

Hoeg HArbor winter

But we were never really alone.  The outpouring of support, the check-ins to see how we were doing, the offers for rides, and most of all the prayers for answers carried us through.  I am humbled by the show of love and comfort we have received.  The blessings of true friendship.  I thank each and every one of you for being there for us.

Rich may be cautious in his optimism, but the mood in that house has lifted.  In contrast to a few days ago, his spirit is soaring.  And I’m riding that high.  I just know we are turning the corner.

Life Rearranged

I’m off kilter. I’ve been thrown off balance. My norm is rapidly unwinding, and I don’t understand the new norm much less the future.

My strong, independent husband, Rich, has suddenly been robbed of his outdoor vision, and his world is dissolving with it.  He who lives for birding, photography and just tramping through the wilderness can no longer do any of this.  Driving is out of the question.  “I feel like a prisoner in my own house.”  The couch is his “happy place.”  There he can see, and feels safe.

Rich’s bird photography often takes him deep into the woods

I try to think back on the progression of this condition. It is astounding to realize that it manifested itself well over a year ago, in rapid blinking, more than normal. I didn’t see it. Rich didn’t feel it. But others noticed, and now comment on it.

Rich managed to cope with his degrading eyesight long enough for it to grow dire. Without knowing what it was or feeling (or perhaps acknowledging to himself) the progression of this condition, it continued, steadily curtailing his sight. His coping masked the advancement. Hid the impending decline. The suddenness came when nature tipped the balance. He could no longer compensate. He could no longer deny it.

Even so, it is hard to conceive of the gap in his capabilities between bicycle touring in Norway in August – which he managed, if with great difficulty – and today. The difference between being able to gut it out, and being paralyzed with fear. Shut down by sheer anxiety. Not being able to see at all.

The lightning speed of this life change is bewildering. If I am feeling ungrounded, what must Rich be experiencing? I can name many words. Depression. Frustration. Stress. Fear. Dread. Anxiety. A deep sense of loss. It is only slowly that I realize the depth of these feelings, and just how debilitating they are.

It’s just before Christmas and we walk down the block with Carl and Chelsea and their two children. A bagel walk, normally a fun outing. Rich walks ahead but seems to be faltering. I move up and grab his hand. His strong grip expresses his fear. He chokes back tears, confesses he is fighting off a panic attack. My fiercely self-reliant husband has been reduced to a dependent, sightless invalid I no longer recognize. Even though he did almost this same walk solo yesterday, today I wonder if he will make it. “It’s so much harder with people,” he says. “It shows me that I can’t interact with everyone. I have to concentrate 100% on staying on the sidewalk.” He manages the walk there and back. Says that holding my hand helped. That it enabled him to stave off the panic. On the way home, I can tell he’s reaching his limit. A simple walk does him in.

We navigate the medical world, seeking answers.  Dry eye repeatedly comes up, but doesn’t explain enough.  Finally, a specialist in the Cities nails the diagnosis: Blepharospasm.  In short, there is a neurological miscommunication between Rich’s eyelids and his brain, causing impulses that tell his eyelids to slam shut.  He cannot will them open.  It is triggered by dry eye, light sensitivity, stress, cold and other factors rampant in our Duluth winter – hence his problems outdoors.  His corrected vision is perfect.  It’s just that he can’t open his eyes.  He’s not blind, but he can’t see.  Having answers is great relief, but due to the holidays and insurance requirements, treatment is weeks away.  The wait is excruciating.

I can’t help but feel survivor’s remorse – guilt as I trot out of the house to go skiing, a passion of his.  Guilt over being able to enjoy the Christmas lights he can’t see.  Extreme guilt over wanting to be able to control my own life, which is inextricably woven into his.

There are so many ways to trip up.  I can’t find something that is in plain sight, and thoughtlessly utter, “I must be blind.”  Complaints about the car only remind him that he can’t drive.  Even mentioning the weather is a trap.  He’s stuck indoors.

Our lives are both transformed.  Our collective future is unknown.  Plans become moot, what was once routine is fuzzy.  But we’ve also grown closer.  We are far more in tune with one another, more thoughtful, more appreciative.  Yesterday’s arguments and irritations melt into frivolous trifles.  We’ve had to throw aside selfish wants for life’s realities.  Compromise becomes easier, as does putting the other person first.  We touch more often, reach out for one another readily, hungry for connection.  A burning need to feel the love.

At long last, Rich has his first treatment – Botox injections along his eyebrows to deaden the nerves and stop the spasms.  It is typically effective in over 90% of such cases.  We are told it will be seven days before it takes effect.  So the waiting resumes, but this time with hope.  That makes a huge difference.  This could rearrange our lives yet again.

Rain and Shine

Four kids ages 1 to 9.  Two parents.  Two grandparents.  Three generations in one small retirement home.

What to do when it rains on your weekend plans?  Go out anyway!  The key is to work with the weather, not bemoan it.

Inspired by Anne Marie Gorham, of Lake Superior Beach Glass (who happens to be the daughter of my best friend in Jr and Sr High School), we headed out to Burlington Bay Beach in Two Harbors.  “The best time to find beach glass is when it’s raining,” grandson Ben informed me.  He’d seen enough of Anne’s videos in pelting rain to know.

And sure enough, he was right!  We forgot all about the raindrops while scouring the beach for those glistening shards.  It didn’t matter that most were tiny white specimens.  The mere fact that they were plentiful kept us peering, bending, picking and looking for more.  I admit to feeling giddy each time I plucked one from the rocks.  We scored some turquoise, green and one cobalt blue piece too.

Looking for beach glass 1 Looking for beach glass 2

We had visions of hiking on the North Shore in the brilliant fall foliage.  Instead, we decided to check out the raging torrents at Gooseberry Falls.  All that rainwater swelled the river beyond its banks, plummeting down to the lake with a thunderous roar.  Something tells me the kids found it more entertaining than fall colors.

Kennedys at Gooseberry Falls Ben at Gooseberry Falls

Passing the remainder of the day playing games, it was hard to imagine the rain would ever stop.  But Sunday morning dawned crisp and clear.  Seizing the moment, we started at The Deeps, where we inspected the new footbridge, then made our way to the Lester Park Playground.  There we stumbled on a Park and Rec “Pop-up” event.  The collection of lawn games and outdoor activities soon lured the kids away from the playground to try the offerings.

Mya and the Pop Up Park sign

Kennedy boys playing soccer in the Pop Up Park Mya tightrope walking in Pop Up park Mya playing Jenga in Pop Up Park

Karen was still intent on getting in that hike.  “I don’t want to go for a walk,” the kids wailed.  But as soon as we reached the COGGS Hawk Ridge Trail, the oldest two kids were off and running.  “This is so cool!”  They loved the advanced structures created for the most adventurous of mountain bikers, scrambling over the steep rock formations.  Lakeside spread out below us, a collage of yellows and greens, while leaves of every color carpeted the path.  Reining them in was impossible.  Their energy contagious.

Ben Mya on COGGS trailBen Mya on trailBen Mya overlooking cityIt’s hard to say which was better, playing in the rain or the sunshine.  I just know I’d do it all over again in a heartbeat.

 

A Little Girl’s Prayer

I guess I’m not the only one moved to tears by finding Karen’s song.  It was heartwarming to know that I was able to convey the emotion of that experience well enough to invoke it in my readers.

Several of you have asked to listen to the recording.  I have added it to the original post, but here it is for your listening pleasure.  For those of you who get my posts by email, click here to listen to the recording.

Did you cry too?

The Power of Prayer

The sun illuminates the radiant fall leaves outside the window of the cabin as Rich hunches over the CD player. “I unearthed some old CDs when I did my big clean-up at home a few weeks ago,” he says. Strategically placing himself between me and the disks he loads one into the machine. I’m sure it is some funky old tunes of his. Until the music begins.

Soft strains of a guitar prelude capture my attention and tickle my memory. A sweet youthful voice picks up the melody, adding words, lovely yet confident. Within moments the music embraces my heart. And then squeezes.

“Is that… Karen?” Rich nods.

“Wait, she wrote this, didn’t she?”

A glance at the CD cover, now visible, confirms it. “A Little Girl’s Prayer,” Song written by Karen Hoeg.

A little girl's prayer

Standing spellbound, I let the song flood my entire being. Captivated by each note, entranced by every word, savoring the memories. Tears slipping silently down my cheeks. I dare not move until it ends. And then we play it again.

This was the music of our daughter, at age 19. Not your typical teenage music. It was a testimony to her years as a baby and growing into a little girl, each verse ending with her parents reciting her bedtime prayers. Our baby, our little girl, our nightly ritual. She wrote it for a music class in her senior year of high school. By the time she recorded it she was about to leave for college. Yet the bond continued to hold. As she put it, “My little life has grown up strong. Still I ask would you pray with me – your little girl’s prayer.”

How could I have forgotten this? And yet, recovering it makes it all the sweeter.

Rich hands me the CD case. “Get ready to cry again.”

Opening the lid, I read the note in Karen’s neat writing. An inscription with a Bible verse and a heartfelt thank you for our parenting. Then I notice the words on the CD. “For my parents.” It means more today than ever. I reach for the Kleenex again.

This little girl is now a mommy herself. She tucks in her own four kids every night.  Presses their hands between hers as she prays with them, the same words we recited with her. A little girl’s prayer.

She was their baby, their little girl
Too little to speak, or walk on her own
This little life, they took in their arms,
And every night would say to her…

Chorus:
Now I lay me down to sleep
I pray Thee, Lord, my soul to keep.
Thy love go with me, through the night,
And bless me with the morning light.

As time went on, their little girl grew
They watched her first steps, and heard her first word
They watched her learn, to laugh and play
At the end of the day, they’d still say…

Chorus

I am their baby, their little girl
I’m learning to speak and walk on my own
My little life has grown up strong
Still I ask, would you pray with me – your little girl’s prayer?

Chorus

And bless me with…
Bless me with the morning light.

The Little Cabin at 30

“Grammy, do you ever wish the cabin was bigger?”  I had to smile.  With 17 people gathered for the weekend, coming in and out of the modest abode, it was a fair question.  No sooner had I responded to the seven year old, “Yes, I do, Mya!” when her mother chimed in.

“You have to remember, Mya, when I was little it was only the five of us here.  It was just the right size for us.”  She was right.  How well I remember coming up the driveway for the first time, knowing right away that it was made for us.  Perusing the knotty pine interior, the stone fireplace, and the two tiny bedrooms.  It was the simplicity of the place that appealed to me. The bookshelf to stock with cabin reading. The short wooden dock, enough for our 12′ boat.  It was a place to build family memories.

What is it about a remote cottage, with its cramped space, mismatched dishes, mattresses that sag, raggedy towels and a needy wood stove that is so appealing?  The yard games we never play at home are entertaining there.  Bonfires invite storytelling.  Grilled meat tastes better.  The chilly lake dares intrepid swimmers and fishermen. Board games take on new life, and fierce competition.  It’s a-ok to lie in a hammock or sit on the dock and while away the afternoon reading.  Or snoozing.  And we have front row seats for the Northern Lights.

For so many years the cabin has been our haven, away from work, school and too-busy lives.  Time slows down there.  Priorities shift.  Time slips away, but the cabin doesn’t change.  We still treasure the simple existence it offers.  I still get excited bumping over the dirt road as we approach that driveway yet again.

Those three little kids in the bunk beds are now grown and married and have produced five (almost six!) grandchildren for us.  Carrying on the tradition, they have come to treasure their own family time at the cabin.  It’s still just the right size for them.

It was their idea to celebrate this milestone.  This Labor Day marked the 30th straight year we have gathered as a family with our good friends the Readingers and their offspring at the cabin.  Admittedly, we had to farm a few members out to beds in nearby resorts this time, but they all converged on the cabin throughout the day.  As Mya noticed.

Thirty years generates a lot of memories.  Everything we did triggered flashbacks, smiles, rolling eyes, laughter.  It was a weekend of déjà vu as grandchildren followed in their parents’ footsteps.

It was a celebration of friendship.  Of lasting bonds that form over years of sharing, from being new parents to empty nesters.  From being children to new parents.  From carving out time away from work to relishing retirement.  And through it all, we still relish cabin life.

We did our best to recreate some of the best moments.  Some, like this one, came as a pure gift.  Like a blessing on our gathering.

The remainder will have to wait for the next gathering, at the Same Time Next Year.  And 30 years beyond.

Kindness Rocks

It was the kind of activity that transcended ages.  Crossed cultural boundaries.  Steeped in good will.  The perfect activity for our visiting Czech family.

Surprisingly, it came as part of our farm share.  Our CSA farmer, Heather-Marie from Rising Phoenix Community Farm, does a lot more than provide us with bountiful fresh organic veggies all summer long.  She focuses on the community aspect as well.  Once a month she hosts social events for all the families that she feeds.  This time it was the Kindness Rocks Project.

Gathering on a warm summer afternoon at Hartley Nature Center, we found picnic tables laden with rocks and a supply of paints, paint pens and Mod Podge.  The idea was to paint the rocks with inspirational messages or pictures.  While I struggled to come up with designs, the girls dug in and swiftly produced colorful rocks with fun sayings.  Although we encouraged them to paint some Czech sayings, with a little help from their mom they turned out catchy English phrases and cute illustrations.  Soon the table tops filled with colorful rocks, created by young and old alike.

Pavla and girls painting rocks Rich and HeatherMarie painting rocks

The art project was fun, but it was only the beginning.  Next came the Kindness part.  Megan Murphy is the creator of this national movement, which “encourages people to leave rocks painted with inspiring messages along the path of life.”  The idea is that one message just might change someone’s whole day.  Our next step would be to find homes for our rocks.

I had thought we might scatter them during our travels and adventures over the next few weeks of their visit.  But forgetfulness meant the rocks were all still waiting in the garage on the last night of their stay.  An excursion was immediately organized, so that we could complete the mission.Kindness Rocks

Judging by the enthusiasm of the effort, the joy in clambering over giant rocks, the appeal in depositing the messages in secret hidey holes, this part of the project was a highlight of their stay.  The rock pile soon diminished, creating a rich repository of inspiration for future visitors.  Pavla translated the girls’ words for us: “Better than a playground.”

Bibi with Kindness Rocks Elenka with Kindness RocksBibi and Elenka hiding rocks

I had thought some rocks might make their way back to the Czech Republic to await being found there.  But it was far too much fun to plant them on the shores of Lake Superior.  Leaving the world with a little more kindness was the perfect finale to a wonderful visit.

Molly and Rich with Pavla and girls