Tag: retinitis pigmentosa

Saying Goodbye to My Grandma Jean the Queen

The call came at 3am Wednesday. Grandma is dying. She probably won’t make it through the night. If you want to say your final goodbye, you should come.

The lights at grandma’s house were dim when we arrived, and the air was heavy. Short, labored breaths rattled out of her lungs, sounding like a child with croup. She lay tucked under blankets in a hospital bed in the middle of her living room; my cousin leaning over her, inserting morphine tablets under her tongue to keep her comfortable.

Being on hospice for the past week, the call had not been entirely surprising, though she had been so alert and responsive the prior few days that we had thought it might be weeks until the end.  But here we were, in the middle of the night, beginning our final farewells.  Some family members sat perched on the queen-sized bed near her hospital bed, while others lingered on the couch in the adjoining family room, taking turns leaning over her and whispering words of love and gratitude. Continue reading “Saying Goodbye to My Grandma Jean the Queen” →

Welcoming the Muse: Trying on the Life of an Artist

Orchard - The New Artists Discussion
I’ve always been hesitant to call myself an artist, or even more specifically, a writer. Since I don’t earn a living writing and am not famous, two of our culture’s main measurements for success, I’ve never thought my art really matters.
But watching some artist interviews during “The New Artists” series at The Orchard the past few weeks has helped me realize that my art does matter.  It not only matters in my life, but it matters in the lives of others, no matter if it’s just a handful of readers or tens of thousands. Continue reading “Welcoming the Muse: Trying on the Life of an Artist” →

How We Approach People: A Follow-up Conversation

One of the things I love about writing is that it helps me organize and connect the many thoughts, facts, emotions and analysis scurrying around in my head.  Basically, it helps me make sense of the world as I’m experiencing it.

Sometimes these connections happen while I’m working on an essay, but other times they solidify after I’ve already posted, often through follow-up conversations and comments people post.

There were definitely some reactions from friends and readers regardling my last post on my recent travels.   Through these conversations, I came to some realizations.    Continue reading “How We Approach People: A Follow-up Conversation” →

What Newborns, Airports and Eye Contact All Have In Common

20130426-091958.jpg
So the doublevision family has grown, as Jenelle welcomed Baby Ben into the family on Easter Day!
 
I just had the privilege of heading out to the northwest to spend a week with my favorite twin and her new, little (well big– now almost 10 lbs!) bundle, along with her adorable, active preschooler and amazing husband.
 
Obviously, traveling from the Midwest up to the Cascade mountains took some traveling. And if there’s anything that stresses me out about traveling, it’s airports. While I’m still stubborn about not using my cane, airports are one place that I really won’t enter without my trusty colored stick. Continue reading “What Newborns, Airports and Eye Contact All Have In Common” →

Old Habits Dying Hard

Being misunderstood is something we really don’t like as humans, especially if we are of the people-pleasing variety.

Beginning in middle school and continuing through college and into adulthood, I have heard comments such as, “I waved to you but you walked right by me”, “you totally dissed me”, “Why don’t you ever say hi to me when I pass by?” and so on.

Some of my most embarrassing/humiliating/humbling moments include scenarios surrounding these phrases. These moments include missing high-fives, not acknowledging someone i’ve known for awhile, calling a long-time friend by the wrong name when I first see them, and failing to shake people’s hands. And these are just the scenarios I am aware of, and many times because other people have told me about my faux pas after-the-fact. I am sure there are countless other incidents that I am unaware of. Continue reading “Old Habits Dying Hard” →

Mother Wisdom

Here is another wise guest post from our mom, Judy.  She’s always been such a great example to us of being positive, and it’s amazing to see that she continues to challenge her own thinking, even her positivity.  I often hear from friends how their parents seem so “stuck in their ways” and how many of them aren’t willing to work on personal growth or challenge themselves beyond a certain point, so it’s refreshing to see our mom model this.  

—–

Have you ever experienced quick, flippant responses like “It’s all good!” or “Perfect!” after sharing a difficult circumstance with someone?  It seems they are harmless comments as we respond affirmatively and positively.  Generally, being positive is a very good thing to be. But, what if things are not at all good?  What if someone is struggling?   What happens when we don’t really listen and quickly jump to ‘Count your blessings,’ ‘Don’t worry, be happy,’ or ‘Think positive!’  Does it minimize what the person is experiencing?   Continue reading “Mother Wisdom” →

Sometimes I Like Cold Weather

20130115-131002.jpg
I once tried to use the word “coldth” in a Creative Writing class in high school. My teacher crossed it out in large, red letters and wrote “Not a word!”, which annoyed me because, duh, I know it’s not a real word, but I was trying to be “creative” and make up a new word that would describe a cold feeling that is actually comforting. Obviously, I failed. So here’s another attempt:

Living just outside Chicago, everyone dreads our icy winters. Being that I walk everywhere, I don’t exactly look forward to spending 20 minutes bundling up the kids and myself and then maneuvering the stroller around snowbanks, slush puddles and irresponsible neighbors’ un-shoveled driveways (okay, fine, it’s usually our snowy driveway!)

But even with the dread of a cold, long winter ahead, I must admit that I felt a little giddy the first time the temperatures dipped down in the 30s in November. While I loved our frequent trips to the park this warm December and first week of January, I feel a nervous excitement over the recent falling temps. Some of you will stop reading now because you are so irritated that I would even hint at appreciating freezing weather. But I just have to say it.

Sometimes cold temperatures bring warmth to a home in the same way that hard times bring families together.

It’s an excuse to crank up the heat, light a fire, drink hot tea, snuggle closer…

It takes a good freeze to kill the pests, such as ants, and for some reason my house always seems cleaner in the winter when there’s no moisture or humidity in the air. And even thought I know people tend to get sicker in the winter, a good freeze seems to kill some of the germs floating around, which could be the reason influenza and stomach bugs have been rampant this winter in the Midwest, according to many healthcare professionals. And I truly have enjoyed bopping around town without a coat nor icy sidewalks these past couple months. But it’s time to freeze off a few germs.

It’s also time for some brisk walks– the kind that wake us out of our sluggish, January slumber. “Blue Monday” is coming up on the 21st. Apparently, psychologists have come up with a formula based on the amount of days after Christmas, the weather, the amount of sun, etc. that designates the 21st as the most depressing day of 2013 for people. So, knowing that I have the potential to be at my lowest on this day, I know that fresh air and exercise are remedies for me.

And there’s really nothing like frosty air to cool me off when I am heated up over something. Like yesterday, when everything seemed to be going wring, leading to a frustrating climax in which I encountered a difficult phone representative while trying to file an insurance claim. The conversation left me with hot, angry tears by the end of it, and since it was time to pick my youngest up from preschool a few blocks away, I had to wipe my tears away and pull myself together. It had been such a draining day in general that I really worried I wouldn’t be able to get out of my angry, sad funk. But as soon as my feet met cold pavement and my lungs inhaled arctic air, I felt my insides relax. The air cooled the heat of my anger, and I felt refreshed, heavy coat, mittens and all. A spring, summer or autumn day could not have revived me the way this winter one did. While I’m glad it’s not winter all the time, I welcome it for now.

St. Lucy Day

stlucyToday is St. Lucy Day. Great, you’re thinking. What does that even have to do with anything? Well, there’s a definite link to vision here.

My husband and I always wanted to have a daughter named “Lucy”, even back when we were 18 and dating, we talked about this name, inspired by a song by the band, Over the Rhine, the adventurous character in the Narnia series, The Beatles’ song, and its meaning: “light”.

It wasn’t until we actually ended up having a little girl named Lucy that we discovered she is the patron saint of eye diseases. While St. Lucy Day is celebrated most in Sweden and Norway, it is also observed in many other European countries. It is often celebrated with women carrying sweets and lights, often with a procession led by one girl wearing a headpiece with candles to “light the way” as St. Lucia once did.

My 6-year-old Lucy is a saint to me. Even on our first outing alone at a movie when she was just 3, she instinctively knew to grab my hand and lead me into the dark theater, her tiny hand clasping mine tightly even though her young mind probably didn’t eve comprehend why she had to help me. Whether it’s helping me match socks together, find crumbs that have fallen on the floor, or leading me through the dark, she is my little daily saint.

It’s interesting how un-phased yet protective she is in regard to my vision loss.

The other day as I was walking with the girls downtown, Lucy and I were talking about the possibility of getiting a guide dog someday. When I told her it might be awhile, she replied, “That’s okay mom, I can be your guide dog until then… Ruff Ruff!”

Ben’s uncle, who is a Catholic priest in Northeastern Ohio, wrote me a very endearing letter after he suffered from an eye illness that resulted in double vision for a few weeks. The time he spent in prayer and contemplation as he struggled through his illness brought Lucy and i to mind, so he wrote some of his insights to both of us. Here is an excerpt from his letter:

“I suppose I never gave this any consideration before, but I thought how significant it had to be for you, Lucy, to be so named and to have your mother and aunt with an eye ailment. Lucy, you will come to know that Lucy comes from the Latin word “lux, luce” which means light. I’ve also come to learn how much light refracts in our eyes so that we can see as we do. In our Christian faith, Lucy, you will learn that Jesus is the Light of the world for us. He is the true light that will take away all darkness in our lives. As the prayer card indicates, we share in the Light of faith that is Jesus Christ because of our baptism and we are to let that light burn brightly in our lives. St. Lucy is a patron saint for you, but also keep in mind that the name has much association with Jesus who is the Light.”

This letter is a tangible reminder of God’s goodness and of all the saints in my life. The dictionary definition of saint is “A person acknowledged as holy or virtuous”. I have numerous saints in my life– people who make tough days easier and sweet days even sweeter.

I have a good friend, for example, who picks up odds and ends for me at Costco, generous in her time even as she totes around her 3–year-old while trying to get her own list of items in a crowded store. Whether it’s surprising me with a gift basket on a tough day or running an extra errand…. she adds me to her list time and time again, and I’m not sure if she’ll ever know how much she blesses me despite my feeble attempts to thank her.

And another friend drives out of her way every single Sunday to pick the girls and I up for church since my husband leaves very early. And this is no small favor– she has to get her own kids ready, load extra car seats and listen to a car full of children bark orders about adjusting the volume on the DVD player….all while driving on the highway next to some terrible Sunday drivers. It’s truly a miracle that we make it to service on time (usually!) It’s also one of those things that I didn’t realize was a relief until it was offered. Being able to worship with my community each week without having to make numerous phone calls in hopes of finding a ride relieves so much stress and anxiety. I think back to how many Sundays I used to miss at our old church, and this is not to say that there were not generous people who occasionally drove us. I would never expect anyone to drive 35 minutes out of their way on a weekly basis, but the fact that there’s a saint in my life who does so without a second thought or even a hint of irritation is a gift.

Saints add that bit of warmth to our lives, often when we don’t even realize that we’re cold. They add warmth to our homes….sometimes even literally. My mother-in-law recently spent 8 hours sealing our old windows shut for the winter. She gave up an entire day so that her kids and grandkids can have a toasty winter.

Whether its family or friends, we all have saints in our lives, and whether we notice them, they are blessing us often. I am deeply grateful for my favorite little St. Lucy and the way she sparks light into my days.

Large Families and Humble Parenting: The Graveyard on Christmas Part 2

 

While standing in a cozy, haphazard semi-circle around my grandfather’s grave on Christmas Day last year, my grandmother remarked, “Just think, all these people are here becaues of 2 people.”  And she was right. Not even all of her 9 children were there, yet the 7 that were, along with their families, created a small tribe of noises and happy commotion.

Three little girls sat on a memorial, pretending it was their horse, siblings posed and snapped pictures, and others milled around, taking it all in.

Maybe it’s just the habit of blending in with a large family, but large groups of people have a numbing effect on my vocal chords.

I sometimes wish I was one of the louder, more boisterous personalities like my grandma, making friends with the masses and spouting off witty remarks.  But I just love observing it all (kind of a pattern lately, see “Spectator“).

I like to think that I inherited some of this from my grandpa, who did a lot of observing.  He was quieter, but always contemplative.  He saw things.  And just when I’d kind of wonder whether he was really with me, he’d either crack some quiet joke or make some interesting observation.

My toddler tends to take after her grandma, however, so I wasn’t overly-surprised to hear her yell, ‘towers!  Knock ‘em down” as she pointed to the gravestones, which caused me to wonder about the wisdom of bringing young, rowdy children to a graveyard on a day when there may be people silently mourning loved ones.

My worry increased as my 5-year-old began prancing from stone to stone, pausing to ask loudly “And who died here?…..And who died here?” at each one.

Since darkness nipped at our heels, night blindness made it increasingly difficult to watch my children as they sprang around the graveyard like it was a playground.  Fortunately for large families, my college-aged cousins chased them around while other family members called out, “please get off that” as they climbed up on strangers’ gravestones.  There was a time not too long ago where a situation like this would have upset me.  Losing control and allowing others to intervene used to bother me.

But I guess the saying, “It takes a village” has proven true for me on so many occasions that I began to feel grateful for the times when others step in to help parent my children.  Now I often feel perplexed when I see friends or family get annoyed when other people correct their children, as if they are the only ones in the world permitted to help keep their kids safe and respectful.  Most of the time I am relieved when people help keep my kids in line because I know it’s for the benefit of everyone, including my children.

It takes many eyes, many hands, and many chasing feet to raise children.

I guess in a way it takes a certain amount of humility too.  Allowing others to correct your child, especially when you are present, is not easy.  I imagine that many parents– sighted or not– feel threatened or embarrassed when others step in, as if their role as parents in being judged…. and this is one way to look at it.  But here’s another: I feel like people love me and my kids enough to help me see what’s going on with them– figuratively and literally.

I don’t know why I’m going on about this, except to say that it’s a lesson that my visual challenges have taught me that I think could be helpful to many parents who might find themselves getting unnecessarily upset in these situations.

We all need help sometimes, and that doesn’t say anything negative about our parenting or our character.  In fact, quite the opposite; the way we set aside our pride and respond to assistance says volumes.  This comes from someone who often links arms with pride.  I don’t think I’d have the same appreciation for my large, amazing family if I didn’t take the time to step back once in awhile and lift the veil long enough to examine what’s really going on.

There’s a lot of wisdom and a lot of beauty waiting to be unveiled out there….. in places like school drop-off lines and playgrounds and grocery stores and graveyards.