Thus far

Struggle bus rather than sleeping is one of my common life challenges. So the other night when my brain took off on it’s highway robbery, I found myself thinking about all these things once again. Setting up stones…. Our acreage is full of really large rocks. Many of them were picked up from the fields around and placed in the “rock pile.” Once years ago, someone lined the driveway with the rocks to keep drivers off of the lawn. My father-in-law still hates to see the rocks even in landscaping. My preference is to put them into the landscape and garden areas, rather than a pile that grows weeds and trees.

Not many people know what an Ebenezer stone is. Or even have ever heard of such a thing. Milestones are more commonly recognized, like growing and walking, driving, graduations, etc. Middle of the night statue building and laying stone walls while sleeping? Never.

My favorite Bible verse is from I Samuel 7:12, “Then Samuel took a stone and set it up between Mizpah and Shen, and called its name [a]Ebenezer, saying, “Thus far the Lord has helped us.” What makes this verse a Milestone Marker for me? The idea that one thing is ending and another beginning has always intrigued me. Marking transitions in life, whether they be new jobs, careers, or life changes is important. But most important is recognizing how you got there and how you will accomplish the next. “Thus far the Lord has helped us!”

New phones are never easy for the visually challenged. But for me, I simply put the new one down and it takes weeks rather than days to learn everything. We get use to doing things a certain way, and when that way “expires” life moves on in a different manner. Sometimes rather slowly.

Brain fog that follows a sleepless night is probably the worst The ability to function well and do anything with precision is hard. So I spend the majority of the time crocheting some pattern that is very repetitive. The past two weeks I finally finished my virus stitch shawl that I started two years ago. It is quite beautiful. And yes, it makes me look like I was born in the wrong century. I don’t care. I love making and wearing shawls

This little area of the yard is passed by daily. It is very strongly and “Ebenezer” for me. “The bridge that once was…. “. Has such a story. The wood was once a fort over the sandbox, then the fort in the trees, and now the bridge on it’s own island (haha). The wheel was found in the lilac bushes. The only wagon wheel we found on the place so far. The basket that came from my sister’s driver’s mother’s attic. The stones that were brought in years earlier from the field. Each piece has it’s own history. Then there is the tree stump planter we just made from one of the sixty plus year old trees in the grove that are falling one by one. This year being three years into drought, many of the trees are simply hallow and tired of standing up.

“Thus far…”. Birthday celebrations are in the works for both of our moms this year. My mother at eighty and his mom at ninety. Celebrating life is so important. “The Lord has helped us”. We can see the elderly living this even more so than ourselves. For them, it is sometimes hourly that the Lord helps them. Each day holds it’s own Ebenezer as they march from sunrise to sunset. Waking each morning requires a call to the Lord for help just to rise out of the sleeping chamber. Of course it is because of the tale of Christmas and Ebenezer Scrooge that many of us think of old as grouchy. But sometimes I make a mental list of all the challenges our mothers face each day just to remind myself that my milestones are few.

Last night I survived an allergic reaction without an EpiPen. And we made a symptom checker that told us “NEXT TIME” these things occur, it is time for the epinephrine. . It was rather scary, and though I new something was not right, it did not occur to me at the time that it was an allergic reaction. Now I know. Thus far the Lord has helped me, but my husband says, next time the Lord will have to remind us to use the EpiPen!

Color My World Pumpkin

John 8:35 “And a slave does not abide in the house forever, but a son abides forever.” NKJV. Abiding freedom that comes from Jesus the Truth brings us up out of slavery to the past, sins, and bondage to world views that are not His way.

In actuality, this blog was written nearly twenty five years ago. At the time I was putting together the song track for my music debut. The result was twelve songs that told my life story. Each one shared a slice of both my spiritual journey and my coming of age. While the music continues to sneak back into my thoughts now and again, the sharing of these songs came to a standstill at some point. Perhaps looking at each one still give me some peace. So for the foreseeable future, I am planning a “focused writing clinic.”

Right now the creativity in my life has gone into fast track. Keeping up with all of the ideas has forced me to start making lists again. I have lists for everything: what I want to write about, what I plan to crochet, what books I want to listen to, what music I should look up, what plans I have for the garden and greenhouse, and anything else that comes to mind. And for some reason, I am not wore out before I even get started. Yay!

First up Stained Glass Windows. This song was written in my college years as I sought to understand my early growing up years. Originally focused on the first ten years, I think that it actually goes clear through my teen years. what the words mean to me now is different than what it meant at first writing.

Sundays during my childhood always meant church. This past year when church has become a time on Sunday when we sit and watch a live feed, is simply not quite right. All those years of pretty dresses, fixed up hair, shiny shoes, and church music really had a strong influence on me. I loved the music part of church of course. The clothes were just a bonus. (However, getting me to put on a dress these last few years requires summer temperatures.)

The churches that we went to always seemed to have stained glass windows, and so did the houses that we lived in. Old buildings have a history to them that is undeniable. These windows were not my focus as a child. Though they were beautiful works of art and I can picture them in my mind’s eye to this day.

It is what happened during my thirteenth and fourteenth year of life that changed me to the core. I had already had my “Come to Jesus” moment by the time that life would change me forever. I knew who I was, or so I thought I did.

Then came the “mean people” years. Mean classmates, mean men, mean peers, mean parents, mean church people, mean friends. Though I guess if they were mean, that would declare that they really were not my friends in the first place

God chose to color my world pumpkin.

Color my world pumpkin?

Yep. And being a spring baby (birthday in April) this was not my favorite color. I remember when I asked my parents to let me have a yellow room. All was not really my choice, as they proceeded to put up pink wallpaper and gold carpet, and my Grandmother made me a pink with grey bedspread. I never liked any of it. The room was just not quite cheerful enough. Of course, I also lived in one of those houses with a tower room and the windows were at sky level. Talk about the real life “Tangled” experience.

I suppose if you mix pink and yellow, you get orange.

And so that’s what happened.

About the time I could get a drivers’ permit (in my state it was fourteen) my mother decided it would be best to get my eyes examined first. Off to the eye doctor she took me. The only local doctor that had any experience with Retinitis Pigmentosa was alarmed at the progression of the disease in my eyes, and he took drastic measures He prescribed pumpkin colored spectacles.

Well, that about sealed the deal with any hopes for friendship that I might have with my peers. Growing up in small town America meant that since I was no longer athletic material, I was out of IN. Yeah, I said that just the way I wanted to. Mean came into my life more that it had ever been before. I was picked on, teased, called names, and basically treated terribly by everyone who had a capacity for ruthlessness.

Coloring my world pumpkin may have saved my eyesight so that I would be able to drive for the next twenty eight years, but it gave me an “orange tinted” view of all those around me. Some people are simply rotten clementines. I hope they grew up.

Everyone has rose colored glasses. You really can’t deny it. No matter what has happened in your life, all of these situations and experiences effect one’s worldview. Knowing this about yourself, and about others is what makes us human.

It’s when we can take off our pumpkin colored shades and put on someone else’s color for just a moment that makes us relatable, friendly, and healthy.

I don’t know what color glasses you look through. Maybe like me life has handed you some very difficult set of circumstances. Maybe you are one of the lucky ones, with the “rosie” view of the world. I doubt it. Everyone has stained glass windows in their worldview. We don’t have a choice about it. It’s what window pane we choose to look through at others that matters.

Sometimes we have to take the spectacles off. Sometimes we have to put the glasses on. Sometimes we have to clean the lenses to get a better view. Blindness is not always a physical disability. Sometimes blindness is in the heart and soul. Sometimes pink blends with yellow and makes orange.

Disclaimer Alert! I don’t really like pumpkins. Okay, it is fun to watch them grow and it is cool to watch them change colors. I use to love the taste of pumpkin pie, but these days even that does not agree with me much. I would rather have a “squash” pie that tastes just like pumpkin only better-because it agrees with my system. And I am not a fall lover, so the loaded pumpkin decorations are not really my thing either. So it is now obvious to me why my CD failed. The picture was taken in the fall and the coloring is fall. For this “forever spring” garden lover, the CD should have had a spring picture and it should have been color toned to my spring palette with some yellow on it. Oh, well.

From animation to art

When disability changes personality

One night last week, my mind found a hundred different sunset silhouettes to keep me occupied through the sleep hours. Wonderment filled me as I woke, had I ever seen any of these pieces in real life? One in particular was a tree swing, only the rope’s obvious use and frayed strings were more evident. Another was a scene from the Disney movie Bambi that is actually a fire in the back ground. One was the two doves on the tree branch, but with more leafage than the one below. And there are the fishing scenes on the lake, and the moored boats next to docks. While three hours looking for any silouettes on the internet was an empty handed fishing trip. The only ones in my dreams that sort of matched were these two. Each one in my vision did not have an ovious sunlight, the sun being off to the side of the actual object of focus. Sunset is implied rather than targeted.

And why would such art images fill my mind so much? I am unable to dissolve their possibilities in my mind. Each one just keeps recurring at some point in the day. What does this thought process mean to me? And why a sunset? I am not a prophet, I don’t think. Are these prophetic in their nature or a symbol of the past?

More revelation has come to me over the days since these images first appeared to me. I see so much more than the setting sun or a tree swing resting from its flight. The waters of the lake have no ripples from the jet-skies, or the breeze. Each item seems quiet, tranquil, peaceful.

At rest.

Years ago, my brother and I would write little plays and act out various performances. Remembrances of woodbox stages, and piano bench theatre fill my memory. We dressed up as pirates, or Indians and cowboys, or maybe Cleopatra, it does not really matter. Imagination was lord and we were King and Queen of the drama world in our home. From those days I learned to mime, to pretend, and to fib my way through our play day.

Throughout my childhood, from my early temper tantrum fits into my teen years, I learned the power of dramatic and emotional hand gestures. These seemed quite effective in the whole of conversation, speech, and relating an incident to an audience.


One day as a teenager, during my “waitress” years, I learned a valuable less about the tragedy of lost peripheral vision and hand gesturing. My father (who is the carrier for my families genetic retinal degeneration) was telling some story as he often did. While dramatizing his tale to a table of men, he used his hand to gesture some scene. Unbeknownst to him, I was coming in with his refill of coffee. I had tried to get his attention, but everyone knows how difficult it is to get my dad to quit talking. Interruption is not much of an option. Needless to say… the coffee got spilled.

Those were the days of my growing up. Many instances like that very one happened frequently. The challenge was to wait long enough to get noticed. Or to have the patience to wait out the telling. Or to simply never serve. Some chose the later. Gradually my father leaned not to wave his arms about while fabricating his stories. Sadly, it took me a few years to lean this dismembering of my arms and hands from conversation.

And not too recently, a plate full of desert was easily sprung to the floor when because of my lack of sight, my hands reached out for the item only to flip it through the air. Videos of food flying, cakes tipping to the floor, or cups leaping through the air are not funny to me. They are a part of the surprise of visual impairment. Sitting perfectly statue is the best response to the possible “Boo!” Not really so fun anymore.

One example that still frustrates me is my children’s club teaching years. Much of what one does while teaching children is achieving compliance so that the teacher can do her job. One particular student of mine never learned to stay in his designated space. I was actually okay if he did not sit, but the wandering into my space caused acciden after accident. My frustration reached its boiling point each week at lesson. Every night, I would go home in tears because Nathan would get “HIT” every week either by my arm, hand, foot, or another appendage. Could he never learn that I could not see him coming towards my path? I cried every week, because this child made teaching club miserable for me. My eyesight made teaching kids impossible.

Finally we made it to the end of the year and I quit teaching kids club at church. I was heart broken to end on such a sour note. I loved teaching, but children have this nasty ability to move faster than my eyes. Peripheral vision is key to dealing with “needy” children who cannot comprehend another might have some disability that clashes with theirs. I was so sad.

Ending my teaching due to my eyesight.

Yep, It was just one more thing my eyes had taken away from me. Grief set in for some time. I still don’t want to attend a Vacation Bible School program or any child focused event. It hurts. I still want to teach. But it is not possible. These encounters with moving targets still continue. I can’t even read children’s books very well because the text is so unpredictable on the pages. It’s all over the place. Up, then down, then in the middle, and sometimes on the edges. Uff. It’s just too much to feel lost all the time.

So RP changes personalities. Where does the teacher in me go?

What happens to the dramatic, funny girl that once loved to tell a story and get laughs from the room?

One time someone told me, I acted like I did not want to be in a particular place all the time. Actually, that’s not it at all. When someone hands me a cellphone with an image to look at, I simply do not see the gesture. My focus has been on their face, and unless the words indicate their actions… It is not within my perpheral anymore. People in a room throw conversation around like a hot potato. It has become difficult to follow who is talking and where the ping pong ball is now. There are times it gets so tiring, I just don’t try to follow it.

So interjecting appropriate conversation has become difficult when there are more than two or three people in a group.

But just becuase I miss a lot of conversation cues, does not mean I miss every facial gesture. Sometimes I am completely passed up when a “picture” on said phone is shown. This does hurt. Not intentionally, but it does. Sometimes, I see someone roll eyes in my direction at another person because I missed something. Yes, that hurts too.

So I have changed.

From animation to still art form, I have become the unused swing hanging from the tree branch. While everyone else around me is playing baseball, or croquet in the lawn, I miss the whole thing. The ball wizzes right by my head and I haven’t seen a thing. I am lost. And no one has found me.

I am blind, but now I see. I see that I cannot be the same animated dramatic energetic self I once was. Moving too quicly through any space could be hazardous to my health. Having a friend that can’t even sit still for a conversation is not my cup of tea. I had a friend like that once. She was so busy bodied that I would get a head ache trying to figure out where she was all the time.

Now I see that being lost all the time might just be part of who I am. Getting my dog to figure out that she has to be my eyes is the task at hand. If she becomes a new tripping hazard….

Well, the blind fold might have to go up for a day to teach her that she is IT! When I am around people that do not see me as blind becuase there is no blindfold, well, life turns into a still life form in a piece of art. I become a silhouette sitting on the dock while others are gazing at a glorious sunset. The suns rays are not my friend, so I am looking at the silhouettes. The sky has a beautiful orange and pink glow. I hope I don’t forget it.

While the dough rises

First things first

This morning while I contemplated what the day should have in store for me, I remembered that someone in this house said that caramel rolls could be a daily occurrence at mealtime.  Seeings that it has been four days since the cotton-candy-like cinnamon roll melted across my tongue, I decided to get the dough going after the kitchen clean up.  So while the dough rises, I am thinking about all the quotes about bread.

While the earth’s voices can get you hooked on Panera bread, or sandwich shop commercials there is voice far more compelling.  Deuteronomy 8:3 comes in the middle of a narrative about the Israelites journey through the wilderness.  While I am not in a fourth year journey of desert land, there are days when I feel being blind and living in the country has given me a wilderness lifestyle that is akin to hermit living.  But if I really wanted to get the analogy correct I could say that I am stuck between the walls of a Sinai monastery.  But that’s pretty depressing.

Back to Deuteronomy.

When Jesus was in the wilderness for forty days, he was tempted three times.  The first temptation was food.  Issn’t that amazing? Most people find that it’s being alone that tempts them to eat the whole bag of chips.  Or the half-gallon of ice cream.  I’m not like that.  I’m one of those people that could easily forget to eat.  The day might stretch clear into the afternoon, before I realize that I haven’t had any lunch yet.  Food is not my driving motivator. Which is good, because I can’t drive, and I would probably going to every fast-food emergency food establishment at my hour of need.

“Man live by bread alone, but man lives by every word that proceeds form the mouth of the Lord.”  When bread is not the sustenance of the would, that what is?

This year at Christmas time, we were blessed to be ministered to by our daughter’s devotional from young adult retreat.  It was a three part letter that the Camp where she worlds sent out during the week leading up to the Christmas worship season.  While it was rather long, we did take the time to read each of the letter installments.  Her ability to lead us into the season in awe and worshipful reverence was such a blessing.  It’s that very thought provoking  devotion that made me think about my goals for the new year.

First things first.  Put first things first.

And the most important first thing in my life has been finding my sustenance in the words of our Lord.  Jesus is the bread of life .  He will be my everlasting manna during this journey into a visual wilderness that continues to make me feel lost.

When I look up to find a doorway or a wall instead of the way to where I thought I was going, I will remember that He is with me.  When the dog comes out of the darkness of my peripheral black hole, I will find solid in Jesus.  When my nose finally heels in its new crooked state, I will remember the brokenness that my Lord endured for me.  While Jesus set his eyes on the way before him, knowing that the cross lie in his path, this I will remember when my path is interrupted by an opened cupboard door.

Being visually impaired and on the journey to blindness, I will put first things first.  Though I refuse to use my walking cane in my own home, I will ask my Lord for grace to endure all the brokenness that comes from this journey.  This year the Bible verse that I chose to be our family’s theme verse is Luke 1:37.

“For nothing will be impossible with God.”

When we bow our heads

What the flowers teach us

The sunflowers have bowed their golden heads. Not to the sun, but to the changing season. As the temperatures at night have dropped into the low fifties the large 14′ plants have dipped nearly to the ground. The sure sign of the coming fall is here. 

Last week  I gathered my helpers and we cut all the beautiful red headed ones off the plants. With lots of requests for some seed, hopefully the heads will dry and not mold. The volunteer plants that came up this spring from my daughters first packet of seeds a few years ago have multiplied quite beautifully. 

This summer we fed bees, butterflies, and a beautiful yellow finch. While others were filling bird feeders, our seeds and pollen kept a host of creatures quite happy. We knew the migration of the winged creatures was soon. Yesterday in the morning -when of course I did not have my phone-I witnessed five monarchs and three bees all in a one foot square area of the zinnias that are also product of saved blossoms. 

Though I was late on burying the wildflower seeds in my tire garden, but the winged critters still had time to enjoy them. We are not as excited about the insects that have found the vined fruit in the outdoor garden. Tomato beetles and such have devastated about half the crop. Next year I really am going to just toss the plant babies that I have no room for. Overcrowding in the garden creates a regular feast for the little bugs. 

As the world groans under the seize of hurricane winds, devastating floods and unimaginable earthquakes, some people   bow their heads in awe of the Creator. Yet others raise fists in defiance. 

Through all the seemingly business of taking care of plants my heart has been weighted down and my head feels the gravity of loneliness. Recently that weight has driven me to inventory my life and search out those who might feel it’s weight also. 

My first recourse is always to search scripture. The story of Hagar banished to the wilderness continues to draw me to a similar well. In Genesis chapter 16 she finds herself at a fountain. Her realization that God sees her prompts her to rename the spring: God Who Sees Me.  

While my eyesight continues to steal vision from me and I am now often missing seeing things, people, or the dog chasing a cat and running right into my legs and knocking me to the ground- I am pulled towards this idea that God Sees Me. 

I bow my head frequently. To see the path. To recover from a branch slap in the face. To ask God to help me with the loneliness of country life.  And as a watch care over the greenhouse and the gardens I am often reminded again how much my eyesight makes me miss. Then one small little creation gives me pleasure. 

One flower, one taste of goodness, one bowed head of a sunflower. One fountain and tractor tire pond. In my lonely alone garden moments God Sees Me and I am  blessed with the growth of some new thing. Sowing and reaping might fill my time and keep me busy but the God who sees me is the One who sustains my life. 

From head to toe and now ribs, oh no!

The daily surprise of RP

Everyone loves surprises, right? Well if you are talking about birthdays or gifts of course. If you are considering accidents and natural disasters NO!  

Living with retinitis pigmentosa involves an element of surprise that for the most part includes chaos and a lot of spilled milk!  The first body parts to suffer are the toes and the head. Unless the person with RP wears  steel- toe boots there’s a sure factor that there will be some broken toes.  

The funniest broken toe problem that I had was when I grabbed to left shoes to wear at church and didn’t check them until church. On top of that we were headed to take our eight year old to camp after that. So it was a Kmart stop on the way to Des Moines for a pair of flip-flops so that little toe could be free to be fat as it pleased! I remember walking through Kmart barefooted and wondering if they would kick us out!

RP loves foreheads, faces and noses. The greetings to those unsuspecting places can occur daily when one is tired. The not so funniest moment for me was when the teeter totter kissed me right between the eyes!  The whack could be heard throughout the whole acreage.  I had picked up a snake and was going to scarce my husband with it when the end of the see-saw bit me pretty hard. I flew back and landed on my back knocking the breath out of me. Should have been on video. We could have won with that one!  I broke my nose that time.  

Kitchen cabinets should roll up like roll-top desks. Who ever decided hinges were a universal cabinet feature did not have RP.  Every time we moved to a new house I learned by the school of hard-knocks about the cabinet doors. When will we ever learn to shut those doors right away?  If you have RP and live with someone that does not-the kitchen can be a war-zone of dishwasher doors and such. I have a permanent dent in one shin from the dishwasher door.  Uffda!

I use to claim that I never broke any bones. Well it just wasn’t as noticeable. The toe or the nose doesn’t get a cast for your friends to sign. My sister broke her arm going down the slide as a child. I remember helping her get dressed. That was the era of girls shirts that buttoned in back. Really we had to help each other before the casted arm. Not sure why I remember it especially as a casted arm thing. 

My grandmother was the first family member to have the degenerative eyesight. I don’t remember that she ever broke anything until her age related osteoporosis began to affect her life.  However I have an uncle with the disease that broke his leg during his career from a stair step fall. It was a pretty bad break.  The story helped me to be quite cautious of stairways. His hanging back two steps behind other walking companions has kept him from further accidents. He has not adopted a trusty walking-cane yet. Never understood why. 

My father also inherited the disease. His numerous broken bones began quite early in his twenties. But his cowboy behavior was the beginning of many woes. The more dangerous approach for him has been using a cane, a GPS device and walking in an old community with various pitfalls and oddball curbs. His favorite saying is “Concrete doesn’t give!” (Meaning budge, move, or dent.) Bones are no match for concrete. The hard cement wins every time.  We are all a little glad his GPS will not hold a charge anymore. The hospital doesn’t need anymore of his hard earned money. 

So how did this rib-thing happen anyhow? I was headed back to bed when the doggie gate I had placed in front of the door greeted me and the rug under my left foot slipped backwards. My ribs hit the gate with full hug force.  The blow took away my breathe and the rest is history that I don’t want to repeat. Needless to say, I have already planned to give the gates away. My memory doesn’t serve me any better than my eyesight, so tripping triumphs can’t exist in my home anymore!  

The puppy that caused me to think that I needed the gates in the first place has been spending more time outdoors. She may have learned something about compassion from the whole experience. Gentle, and sit NEXT to me are now part of our vocabulary. 

Those eyes! Usually what people say when looking at a gorgeous baby. Or blue eyes that are deep pools of water. Well, for those of us with RP those eyes are sometimes not very helpful. So getting a dog that will truly be a “watch” dog is a great goal of mine. Teaching “those eyes” to be my eyes might just break me-literally!  I sure hope we can learn from our mistakes and keep my home a safe-zone from now on.