Sunday, March 31, 2013

At Home on Resurrection Sunday Morning

I don't think I've ever missed church on Easter morning.


The sun is shining on this gorgeous spring day, but two of the Goombas and I stayed home.


Abi, bless her heart, is in even more pain. She rarely wants to eat, or even play. We consulted with the surgeon in another quick trip to Spokane on Friday. He agreed that the eye needs to come out, as soon as possible. He's done lots of these surgeries, which is reassuring.

Right now, we're tentatively scheduled for Tuesday. The surgeon gave us codeine for her, and we're hanging on as best we can for the weekend.


Little Mister and I have used the waiting time this weekend to do school. Here, he's building a pyramid and a ziggurat out of play dough. We figured if we get a couple of days ahead on school, we'll have no pressure on surgery day.

This is one of those times when unschooling was nicer. Not having to count hours and days comes in handy when you have to miss a few, or when you're so excited about learning you want to add a few  on the end of your school day.

Hubby and the other two Goombas went to Easter Sunday church. I miss it, but I'm glad to take care of my girlie, have some time with my boy, and check off another day until next week when life resumes a degree of normalcy.

From my Facebook on Wednesday:
Abi's pain is still getting worse. We've scheduled an appt with the surgeon for Friday (happy 5th birthday Abi) and the enucleation (removal) surgery Tuesday. 

I feel that this is the right decision. But it's a lot harder than I thought it would be. And watching my baby suffer through this much pain is killing me. 

Not to be clich√©, but it's made me think of another Parent who watched His child suffer on this very weekend almost two thousand years ago. He did it for love, and if anyone asked me whether bringing Abi into my heart and life was worth it, even though there is pain, I'll answer yes. The love we now share is so much deeper than these days of pain could ever be. It's worth it, as I'm sure God looks at us in our pain and also says, "It's worth it to love you."

Friday, March 29, 2013

Fifth Birthday and Spokane #2

Today is Abi's fifth birthday, but we're spending it in Spokane at the doctor. Not my idea of fun. We did have a small, family party last night, and she was thrilled with her balloon.

I makes me sad, because I remember that I had the flu on my fifth birthday, and had to miss the family trip to the Mexican restaurant, staying at home with a sitter instead. I've always been sad over that birthday, and now, watching my daughter's birthday be overshadowed by pain makes me remember the old sadness.

I hope in a couple of weeks we can celebrate properly, when she feels better.











A few Pics from Spokane. We did take the kids to Riverfront Park and the carousel. Abi just wanted to be carried with her head snuggled on Daddy's shoulder.












Wednesday, March 27, 2013

Ouch

Abi's bad eye has gotten progressively more painful over the past week, until it's almost unbearable. We took her up to Spokane yesterday, where her ophthalmologist took pity on us and squeezed us in after a long day of surgeries.

It was decided that if the pain doesn't recede in a day or two (indicating a bump or scratch) the eye will have to come out. Luckily it's the bad eye that has no sight anyway, so not a huge loss. But I'm really struggling with the decision and watching my daughter suffer. :(



Saturday, March 23, 2013

Spring?

With the sun shining and a warm forecast for next week, we used our Saturday afternoon to put the trampoline back up. It always feels like spring is really here when we do that.


Northern Idaho weather being what it is, however, it started snowing before the Littles could get up from their nap. Soon the trampoline was covered in a layer of white.


The kids put on snow pants and went out to jump anyway.

Thursday, March 21, 2013

Proud

Curly brought home a report card with all As and a B+ on it yesterday. Her teacher reports that she is doing fantastic and has a great sense of humor. (Yep, we knew that!)

Little Mister finishes his second grade math course this week, and we asked his teacher to send us the third grade one. This kid loves math!

Abi and Bean know all of their letters and letter sounds now. Abi's really excited about learning to read Braille, and Bean is just excited about life. :)











Characteristic

Sitting in the car the other day at the violin teacher's house, I had to smile watching my kids come out and head to the car. Each is so distinct in his or her personality. Bean flew out of the house so fast, I couldn't even get his picture. Curly was smiling, and Mister had his coat on upside-down. Abi wanted to walk all by herself and carry her own violin.

As we were leaving for violin lesson, the following conversation took place.
Me: "Bean is just up from his nap, and almost ready to go to violin lesson with the big kids."
Hubby: "Bean, how about YOU drive everyone to violin lesson, and I'll stay here and take a nap."
Abi: "I'll drive!"
Hubby: "Even better."










Tuesday, March 19, 2013

Daniel's Wedding

Or for us, Three Days In The Car.

We drove down to Corvallis, OR to go to Hubby's brother's wedding. We were excited to see them, and it was a really beautiful wedding, but the drive was really long! The worst part was getting stuck in Friday afternoon rush hour on the I-5 for almost two hours. Yuck.

On the way home, we stopped overnight with S, my best friend. We rarely get to see one another, so it was a real treat to get to see her house, two kids and go to church with them.

We took Abi, and she did great! She loved the trip, was a patient traveler, and stayed close to us. The other three we left at home with a trusted sitter, and they had fun but missed us. We missed them too, although taking them would have been a lot harder. We were really glad to get home, and Hubby and I are both sore and tired two days later.





















Sunday, March 17, 2013

Adventures in Bokeh-land

"Being blind is a constant state of slapstick." ~Ryan Knighton

My Own Beautiful Bokeh

Growing up, I didn't realize I wasn't seeing properly. If that sounds crazy, go listen to Caroline Casey's story, and then come back. Also, I'm not going to go into any detail about how I [don't] see. It's already been covered in exhaustive detail here. Suffice it to say, I don't drive, which is a pain, I can't recognize people, which is embarrassing, and I yell at Hubby when he moves anything I might be trying to find. I always have, poor guy, but we both only recently realized that I wasn't just being an anal obsessive-compulsive organizer. Or, maybe I am being that too. But it really stinks to hunt for a full five minutes for the aspirin bottle just because he absentmindedly set it on a different shelf.

The thing about this whole mess is, I thought everyone saw the way I did. So the things that happened to me as a result of having poor eyesight happened to everyone, at least in my mind. The ironic thing is that I can't actually see other people very well to see whether things are happening to them. So, I went along in my happy haze assuming I was perfectly normal. Looking back, I now discover that a lot of the weird things that I did or that happened to me were simply because I couldn't see, and I was using a lot of good guesses and street smarts to get by.

I loved to read as a kid. Every new book was like a new best friend. I read early and often, and stories were the most reliable escape from my lonely childhood. For all that, I vividly remember the simultaneous sense of excitement and dread when opening a new book. I anticipated the story, while at the same time fearing the pain I knew would come. If the book was good, the story trumped the pain, and I lived with the headaches for days afterwards. If the books was mediocre, it wouldn't be worth finishing, and I'd abandon it. At school, I'd get away with reading as little as possible in my textbooks by listening carefully to the lectures.

Steps and curbs became enemies to be feared. I was always so terrified of tripping and falling that I kept my head bent towards the ground, watching carefully where I walked, to the detriment of my social life or any enjoyment of the scenery. Once I lightheartedly did try to hurdle a draped chain at the edge of a parking lot, only to have it be in a different place than I thought. It caught my toe and I fell forward onto cement, spraining both wrists and ruining my fourteenth birthday with the overarching memory of pain and humiliation. Another time, I panicked in the gym when a shadow loomed in front of me and tricked me into thinking it was an obstacle. I tripped over nothing and fell to both knees, and have not been able to kneel since. Glass doors were hard to discern, and I always put a hand out first to find out if they were open or closed before walking into them. A bully at school used to walk home behind me, putting his foot in front of my ankles to trip me and make me fall. I couldn't see him coming, and couldn't run away if I heard him, and just had to wait for the inevitable. Walk, trip, fall, laughter. An invisible foot from nowhere.

Basketballs came out of nowhere also. One year in elementary school I had to walk through several courts of street ball to get to the playground at recess. No matter how hard I tried to avoid them, the big, hard basketballs would hit me in the face or along the side of the head, shoving my glasses into my nose and bending the bows. I'd sit on the playground bench, carefully bending them back, unwilling to tell my parents who were in the middle of a stressful move and difficult health problems. I managed to avoid compulsory PE class until eighth grade, and then I knew I was in for problems. Luckily my teachers graded on effort, but I used to sneak into the girls' toilet in the locker rooms after class and cry at being the only one who consistently missed the tennis ball or the baseball. I wanted so badly to be good at something that I put effort into, and my teachers merely said, "practice, and you'll get better." But I didn't.


For a while, my maternal family's love of skiing rubbed off and I begged to go skiing with friends, with aunts. After mastering the snowplow on the bunny hill, I was ready for the chairlift. Once in front of the moving chair, however, I panicked. I could not see it coming until it hit me in the thighs and scooped me up in one heart-stopping swoop. When it was time to get off, the ground was nowhere until my partner on the lift stood and I fumbled off the quickly moving seat lest I ride it back down the mountain again. I managed not to run into anyone, although I fell frequently. I assumed I was just a raw beginner and everyone fell. At the bottom of the hill, a nice little path through the trees beckoned, and I saw a perfect shortcut to the chairlift line, peopled with a blur of bright snow suits and hats and echoing with laughing voices. I skied into the little path which turned out to actually be a four-foot drop-off! I remember my skis tilting on the edge like a slow-motion cartoon character, then the tips sticking straight into the ground while the snow rushed at my goggles and I face-planted in the snow. Thankfully, it was soft, and after laying there stuck on my face with my skis stuck vertically in the snow behind me against the drop, as if I was skiing with a different gravity, I squirmed my way free and walked wearily back to the lodge. I didn't get back in the lift line.

Pain became my constant companion. From bending close to read, peering down to walk and cook, from sitting in strange positions to try to see things, my back and neck have ached in varying degrees for twenty years. Eye strain and dry eyes caused headaches which would develop into full-blown migraines. In one journal entry, I wrote, "if I could only shed these manacles of wire and plastic that keep me bound to pain," in my efforts to conform to society's expectation that I continue to see. As the nearsightedness got worse, so did the pain, and it began to include mental pain from the stress of trying to perform at the expected level with peers who had the advantage of sight.

College presented a brand new set of challenges. By then, I had learned a few blindness tricks. I had no idea why I was obsessed with techniques blind people used, but I read every book I could get my hands on that was about or by a blind person, gleaning tidbits about how they coped with life, thinking, "I can really make use of that!" Once in a while I tried to tell parents or doctors that I didn't feel like I could see very well. An exam would be performed, my retina would be pronounced healthy, and a chart would be given to read, which I could usually do. I was told to stop complaining and seeking attention. The doctor would discuss grades with my parents and find out that they were high, and he'd see no cause for concern. I got my driver's license with his blessing and drove for years, despite stress, panic attacks and headaches that would send me puking to a dark bedroom.

One more pre-college memory would shape my future decisions as well. I was sitting in a church van, waiting to be taken to summer camp. Several boys my age sat on the seats nearby, and a couple of girls as well. I remember taking off my glasses with a tired sigh and rubbing my eyes, enjoying the relief from the strain of wearing them. One of the boys wanted to know if I could see without them. I looked at the blur that was his face and said, "no," because I did not feel like trying to explain. It felt like I was lying, because I knew he meant "see nothing" and that wasn't technically true, although "see nothing useful" was quite true. He did the usual routine of asking how many fingers. Sometimes, if they are close enough, I can tell; sometimes not. Someone next to me moved suddenly and distracted me, and I glanced to my left. At once, a chorus of "You can see! You're faking!" erupted. I hastily replied that it wasn't black, but we were distracted by the counselors coming back, and the van heading on to camp. I put my glasses back on, frustrated at being misunderstood, and angry that I was accused of lying. I had not meant to lie.

This and other similar conversations hardened my resolve that maybe I was imagining anything wrong with my vision. I decided it was easier not to say anything about it. If I was supposed to be sighted, then sighted I would be. The first day of classes was hell. I got lost over and over. I assumed everyone got lost. I learned to walk quickly; I memorized where stairs were. I asked people what classes they had and quietly followed them to find buildings. As a music major, I was required to take marching band. Having marched a little in high school, I figured I could make it work. Optimism was my motto.

At first, marching band seemed to be a repeat of the torture of high school PE. I was never in the right place. My squad leader, a no-nonsense junior named Graham, yelled at me constantly. Little by little, I figured out how to do it. I went in before and after class, and practiced eight-steps-to-five-yards until I could march the entire length of the field with my eyes closed and end up with the arch of my right foot on the last yard line. I learned to listen to the other instruments playing next to me, or of they did not play, to the whisper of shoes on turf. Later, I became a squad leader, and made the rest of the line guide to me rather than vice versa.

Games and trips had some scary moments. Uniforms made the band easy to find in the sea of people and noise. Once the group was found, I'd walk nonchalantly along the rows of people looking for the distinctive tenor sax shape. If someone was noodling around on his horn, so much the better. Waiting for my squad leader to yell at me to get in line told me where he was, and the rest was easy. The long stairs up to the concourse always terrified me. I took them slowly, peering at my feet, while an impatient line piled up behind me.

Trips to new cities with the band were adventures in trying not to stay lost.  One day stands out, as we walked into the Boise stadium, and I worried about negotiating any stairs I might find. Shoving down my panic, I followed a group of black-and-white uniforms, determined not to trip and give myself away. I never did trip, nor was I ever outed, as the last thing I wanted was the moniker "the blind sax player." I did marching band for six years.

Classes got easier in college. I knew I had to work hard as I was expected to maintain high grades. Lectures became more helpful than the ones in high school had been, and I listened carefully and took god notes. I still rarely cracked a book. My harder classes, like music history, I set up study sessions with classmates or church friends. I discovered that if I typed out a question-and-answer style study sheet from my notes, my grateful friends would quiz me aloud, enabling me to learn the material I needed. A few things I never was able to get, like trying to discern key signatures on overhead projectors during music history tests, but luckily they weren't a large part of the grade.

Reading music posed another huge problem. Practice sessions on my own involved a lot of peering closely at the music and memorizing chunks at a time, in case I could not see the music on my partner's stand during the group rehearsals. I learned to use a combination of whatever I could make out of the musical line alone with my already well-developed ear and memory. I was never a star player, but I didn't make too many glaring errors.

One notable day, I was told that for percussion techniques class, I was supposed to play the marimba by sight reading the music, and using peripheral vision to hit the right keys. Trying the technique proved to be impossible. I could barely see a few notes of the music, let alone the marimba keys. I'd have to figure out something, and quickly.

During a break between classes, I went into the deserted percussion room and confronted the offending marimba. With eyes closed, I lined myself up with middle C and began memorizing the location of every note using only muscle memory. Given more time, I probably could have become fairly good at it; as it was, I made it through the simple sight-reading exercise, partly by memorizing the music. That was the closest I came to being caught by a music professor, but luckily, people don't notice things right under their noses. It's much easier to assume a person is aloof, stupid or clumsy, and I got by in college just fine without seeing much at all.

It was in college I learned to love hearing the acoustics of space. The echo in the new Campus Commons building, the boom of the Dome and the football field, the echoing stairways in the dormitory were all beautiful scenery to me. I seriously confused my future inlaws on my first visit to Hubby's home by asking to play my flute in the empty grain bin, and reveling in the sound waves bouncing around the corrugated walls.

Working fast food, the voices of co-workers and beeps of machines became as meaningful as the labels on boxes, and I worked carefully to make sure I did not burn or cut myself. I knew I had better tell no one at work that my sight was less than perfect, because I was pretty sure that knowledge of the blindness section of the ADA didn't extend to the bosses at Arby's and I desperately needed the job.

Wanting to be absolutely honest with Hubby that I had vision issues when we were dating (so that he did not make an uninformed choice to marry me), I asked him to try being sighted guide for me. Because I wanted him to learn how to do it, I closed my eyes. Unfortunately, he forgot, and walked me smack into a rack of parked bicycles. After that, I paid more attention, using the techniques I'd long ago perfected of watching carefully, listening and memorizing features of the landscape to keep myself from tripping. He married me anyway, and I didn't bring it up to him again for years.

After graduating from college, I applied for work as a band teacher, even though the challenges just about scared me away. I taught for two years, but ended up in a political battle and thankfully was asked to resign. The stress of being brought into probation on top of the challenge of keeping track of 45 squirrely junior high students who hated me was too much, and I was thrilled to leave. Looking back, I'm not sure if being aware of my vision problems would have helped or hindered me as a music teacher. I tend to think that it might have been only one more nail in my coffin, although there is one particular incident I would love to purge from my memory entirely, and if adopting an identity of a visually impaired person would have prevented this occurrence alone, it would have been worth it.

What happened was this: I had pulled a darling little eighth grader into my office for a scolding when she had done something disrespectful. I was a young, green teacher and once I got her in there, I had no idea what to say to the little blonde scrap of petite defiance standing in front of me. My mind went blank, and I forgot to think about where I was looking, something I try to constantly be aware of, lest I inadvertently stare at some inappropriate body part that I actually can't see. (You really can't tell from looking at me that all the info isn't going in!) Apparently, the best I can figure out, is that while I was facing this girl in all of my teacherly wrath, I slowly dropped my gaze over her frame, and she went home and told her mother that I was staring at her body. As rumors do, this one got back around to me, and I was absolutely horrified. I think I went so far as to call her mother and defend myself, although the memory is blurred by the shame of embarrassment that the years have yet to soften.

I've written in other posts about bells on babies and using adaptive cookery techniques, and this post is already becoming far too long. I don't share these stories out of a desire to provide a sort of slapstick Mr. Magoo-esque glimpse into my inner life, nor do I share them looking for pity or sympathy. For me writing clarifies thoughts, and I'm still processing the idea that I could possibly have some sort of strange vision impairment that is not diagnosable by any doctor that I've ever seen, including the one last week. Coming out and talking about this very personal, very confusing part of my life is still extremely difficult for me. Because there has been absolutely no medical affirmation, I still sometimes wonder, am I imagining this? Maybe everyone feels or sees this way and I'm completely making it all up. Somehow, I don't think so. Despite the amazing technological advances in modern medicine, a healthy skepticism dictates that we still don't know everything about the eyes or the brain. Maybe we'll not know in my lifetime, even.

Habit causes me to shy away from telling stories like these. Who wants to tell about the clumsy, embarrassing, frustrating things they have done? Still, the more I think about my past, the more a recognizable pattern begins to emerge. Where it leads, I have no idea, but I think at least talking about it is a good step.

I'm finally beginning to learn to change the notion that having a trait like low vision doesn't make me less of a person, that it doesn't make me pitiable or make my husband a saint for "taking me on," as my mother once said of the disabled spouse of an acquaintance. I think Abi has taught me a little of her dignity, and the amazing love I have for her, not in spite of her blindness but including it, has done a lot to teach me how to rethink my image of myself, to laugh at my mistakes, to wonder at how long I've struggled to hide who I really am behind a mask of "being okay" instead of honestly admitting that sometimes life is really hard to tackle when I can't see quite where or what it is.  In a way, it's healing to tell that I've had to work extremely hard just to achieve average, and that in itself is an accomplishment. We all struggle with something, and to pretend we don't is to alienate everyone around us. If we share our struggles, we can better share our triumphs.

Thursday, March 14, 2013

Spring Break

Curly and Abi have no school this week, so I set Little Mister's break to coincide. We're enjoying the lazy days to some extent, but Abi's a bit unsettled by the change in routine and upcoming trip this weekend, and Little Mister is bored. He asked me today if we could do school anyway, and if I hadn't been already arguing with my computer regarding a lack of space on the external hard drive, I would have said yes. As it is, he's having to entertain himself with video games, and Curly hunted up friends from school who are also on break.

At the moment, I'm working hard at avoiding packing. Tomorrow, we're driving ten hours to Corvallis to Dan and Bethany's wedding (Hubby's brother). I'm excited for the wedding and we're taking Abi with us, but I'm dreading the hours on the road. Hopefully, with the iPod full of audio books and narrated movies, we'll do okay.

Sunday, March 10, 2013

Who Takes Who?

Although I haven't driven for a couple of years now, I'm still caught off-guard by the way people phrase their comments when we go somewhere together. For instance, two friends who happen to be a a married couple and I went for a hike one weekend. Because two of us had vision impairments, that left E to drive, and he did not mind. K and I did most of the planning and packing.

Still, I had someone say to me afterward, "Wasn't that so nice of E to take you two hiking?"

This morning at church, someone said to me, "So, your friend took you grocery shopping last week with her. Was that fun?" And not long ago, a friend wrote online, "I took my blind friend to the movies," even though I initiated the movie trip.

I suppose to someone who never thought about it, such language seems harmless. I certainly don't want to be the PC police or oversensitive, so friends have to walk on eggshells around me! Of course it seems natural that the driver is doing the "taking," right? Maybe not.

Having things like that said to me makes me feel like I'm about twelve years old, like I'm dependent and reliant on others' goodwill to get me places. It places the driver in the position of superiority, of adulthood, of power. It places the passenger always in a secondary role.

In reality, the trips are more of a mutual partnership. I usually do a lot of the planning, research, legwork and communication. In that case, of anybody, I would be doing the taking, since the trip would not happen at all without my efforts. Of course, it also would not happen without the driver and car (unless I took a bus, cab, walked or hired a driver). It's fairly collaborative.

As a non-driver, I have to be a lot more creative to get myself and my family where we need to go. We accept rides from friends when it's convenient for both of us, and we're grateful for those rides. I try to reciprocate in equal measure with other services of friendship: listening, babysitting, meals, planning, offering to pay, phone calls, tokens of appreciation. Sometimes, we walk; sometimes we take the bus. In every case, though, we take ourselves. No one coerces us to go with them. Only once in a while does my husband take me on a date.

Sometimes I take him. And he drives. :)

Saturday, March 9, 2013

Birthday Room

The timing was coincidence. For years, when the kids got old enough not to need me at night so much, I'd planned to move the adult bedroom into the basement, and use the extra bedroom for something. A kid's room, an office, whatever we needed.

Planning to homeschool the three oldest Goombas next year made it apparent that we needed a school room. I decided the time had come to make the move.

Hubby and I used six tall bookshelves to create a wall around a corner of the basement, effectively enclosing a new bedroom space. (Yes, we have enough books to fill them all.) An ancient door, resurrected from the cobwebs of the garage completed the room, with the help of some new hinges and knobs from the hardware store. It's just the right size for a bed/craft/sewing room. The little basement room that was my sewing room now belongs to Hubby to use for a study/music room. He's thrilled.

The bedroom on the main floor now has several tables and desks, a used bookshelf, a rug and two new bean bags. This fall, two new computers will join Mister's school computer in there, and plenty of books, art supplies, a globe, science equipment, Braille paper and math manipulatives will live on the red book shelf. For now, Mister's computer, my laptop and Abi's Brailler fill the desks. We found the most adorable purple chair at Ross to put in there for Abi. It's so perfect for her, we wondered how we hadn't thought of it before.

With the baby monitor in place, and Hubby puttering around the basement with me, our house feels cozy, and the space seems put to better use. Also, I can use the basement bathroom in the mornings before I go upstairs and get peppered with requests for breakfast, a vitamin, a movie, find my toy, fix my lunch, etc. Maybe it's a small thing, but I'm pretty excited about it!

For my birthday today, my family took me shopping to outfit my new room, and I picked out a down comforter, something I've coveted for years. Curly gave me a hand-drawn card, and Mister gave me the gift of $1.52. It almost made me cry, since I happen to know that he's eagerly saving his chore money to buy himself a video game upgrade, which at $0.50 a day or so, is slow going. The sweetness of gifting some of that carefully hoarded cash to bless Mom's birthday absolutely made my day.

With a project to work on all day, a lovely dinner with my family, no birthday cake to make me sick, and a gift like Mister's, it's been about the best birthday I've ever had. :)












Friday, March 8, 2013

Loving Learning

The boys and I are having so much fun with Mister's IDVA online school! He's racing through the second grade math curriculum, and he loves science! He saves his science lesson for last to reward himself for getting things like phonics and handwriting out of the way.

Bean alternately makes me crazy interrupting us, and then is so cute joining us for an activity or experiment, I don't have the heart to be upset. He wants to learn like his big brother so badly! I let him join us wherever possible.

I'm having fun learning too. Historical facts, mental math... I feel like I'm tickling my own brain as I teach. For example, I didn't know that hailstones were layered, did you? Or that Piet Mondrian was an artist from Holland?