Goggles

I am ever so grateful for the Wisconsin Center for the Blind and Visually Impaired (WCBVI), and for the Pre-school-6 Year conference that they put together annually here in Wisconsin.  Over the years, I think we attended four conferences and enjoyed each of them and gained something new every time.

I specifically remember one presentation that my husband and I attended in which we were given a pair of goggles to wear that simulated a vision impairment close to that of our daughter's.  It wasn't the perfect simulation of her vision, but it had a couple of key things:

• A hemorrhage in one eye, which our daughter did not have, but the hemorrhage occluded the vision from that eye, and our daughter can't see with her left eye

• 20/200 vision in the other eye 

Seeing things "the way" she sees them was startling enough, but the session director then had us attempt to complete various tasks.  If I recall correctly, I was supposed to put together a cabin out of Linkin' Logs.  I recall having to turn my head so I could use just my right eye to read the directions and find the pieces, because only the right eye was "working".  I found it incredibly difficult to adapt, and I started to get a headache because my right eye was working so much harder than my left eye.  I grew frustrated and tired.

My husband also participated in this same session only it was the hour after me, so we didn't have a chance to debrief before he went into the room.  He wore a pair of simulation goggles and completed a task as well.  He recounts a thought-provoking experience that he had while performing his task.  My husband was concentrating on what he was supposed to be doing, when suddenly someone came up behind him, without warning, and wiped his nose with a tissue.  Wow!  Brilliant!  How many of us would do that to our children without thinking about how alarming that would be? 

I realized, after that particular WCBVI conference, that it's important for me to try to see the world through my daughter's eyes.  When she's tired or frustrated, or when a task is more difficult for her than I think it should be, I remember my experience with the goggles I wore that day; the goggles that gave me a whole new perspective, and a healthy respect for everything my daughter DOES accomplish without grumbling or complaining.

You can check out the various low-vision simulation goggles at places like http://www.lowvisionsimulators.com/, or look at some of the vision simulation activities at http://www.perkins.org/resources/scout/vision-and-blindness/simulation-of-vision.html.  

Don't we all wear our own pair of goggles everyday?  We never really see every situation the same way that others see it, because we have our own individual interpretations based on our life experiences. Maybe Tennessee Williams said it best:

Nobody sees anybody truly but all through the flaws of their own egos. That is the way we all see ...each other in life. Vanity, fear, desire, competition-- all such distortions within our own egos-- condition our vision of those in relation to us... That's how it is in all living relationships except when there is that rare case of two people who love intensely enough to burn through all those layers of opacity and see each others' naked hearts. (accessed 2/13/14 at http://www.goodreads.com/quotes/290058-nobody-sees-anybody-truly-but-all-through-the-flaws-of)

Don't Cry Over Spilled Skinny Chai Tea Latte

Evie rings the Bell at the BELL Academy after Telling her Friends about an Accomplishment of Hers

We left the BELL Academy,

(Six hours of braille mixed with play),

Drove down the highway;  off to speech!-

It was a "special needs" kind of day.

"I think we'll get there early," I say, 

Because no traffic did we find...

"So at Starbucks we will pitstop, 

A skinny chai tea latte, I won't mind."

We swiftly grab my order, 

I smile and take a deep cleansing breath,

"Ev, we're still getting there early,"

A relaxed feeling that I rarely get.

I imagined slowly sipping 

My skinny chai tea latte in the waiting room,

I had been waiting for this priceless moment 

Since I woke this morning, now it was SOON!

Excitedly we pulled all

Our belongs from the car,

In the door and there's Ms. Vicki - 

My skinny chai tea latte moment wasn't far.

Evie hoisted her proud new BELL bag

Over her shoulder while standing up,

And that pesky cinch sac swung too wide and

Assaulted my Starbucks cup!

The wise green mermaid didn't cry,

As she bounced upon the floor, 

But I yelled, "No!" and fought back tears, 

My skinny chai tea latte was now no more.

I felt frustration fiercely beating

At the doors behind my eyes,

I knew my emotions were just selfish,

"Tammie, do NOT let yourself cry."

My daughter couldn't help it, 

And she today had her OWN fill,

Of the constant call of courage 

As she fought her OWN dragons...

but still...

This momma was already feeling worn,

Today she felt under attack,

So a spilled skinny chai tea latte,

Was the straw that broke this momma's back.

This poem is dedicated to all my fellow parents who have cried over what SEEMS to be the silliest thing...

The Fear I Fear I'll Pass On...

I looked at Evie tonight at dinner and said, "You know, Evie, with your scabbed elbow, patch of cellulitis on your other arm, scabby bug bites on your legs, and the Band-Aid over your toe that the toenail is falling off of...you look like any normal kid." ...and my heart swelled.

Having a child who's blind, having a child who's got anxiety that is "off the charts" (according to her medical reports), having a child who's got a sub-average IQ and is quite vulnerable in the world; that could all lead my husband and I to say, "No, thank you, we can't do that," or "Gosh, we'd better stay home," or "I don't think that's safe."  But I have been learning that I don't want to "pass on" to Evie any fears of this world that she shouldn't have.  I don't want her to FEAR doing things that other kids should and would be able to do.

I look for ways to make things "doable." I want her to experience the same things, even if it's a different way.  That's why we went to Me and My Gal camp at Camp Black Hawk in Elton, WI.  It's a Girl Scout camp, and as a mom, I was able to go too!  I knew that Evie would not be able to handle a day-camp, let alone a sleep-away camp, at this time with her anxiety and inability to advocate for herself.  So, I signed us up for camp together. 

Mind you...I am not "outdoorsy".  Actually, my mom and my sister were PROBABLY waiting for me to call them in tears myself the 4 days Evie and I were at camp.  Seriously, I couldn't handle a tent in our suburban backyard when I was younger.  I found a eyelash in my mouth one time, and was convinced that I had swallowed a wood tick and would likely die within 48 hours.  So, you put this mommy in the deep woods, in a platform tent, with a bathroom about a 3 minute walk to the lake, with no electric in our tent, with mosquito netting around our cots to "attempt" to keep out pests....well, I was a little wee bit outside my comfort zone.  But I thought to myself, "You, Tammie Jo, will be brave for your daughter this time.  You can no longer be wimpy."

And we did it!!!  What's more, we enjoyed ourselves, and can't wait to go back!"  Did the mosquitos and spiders and deer fly, and horsefly, and ticks drive me batty? (Yes, there were bats too!)  Of course the did.  Did I feel creepy and crawly, and say a few extra prayers every night and every morning?  You bet I did!  Did Evie get frightened by the darkness in our tent, and finally did we agree to sleep in our car to have the light of the moon? You bet she did!  And was I MORE than happy to sleep in the car as well, because it meant fewer bugs...aaahhh, that would be a BIG, YES!  We slept darn well in that little blue Camrey...Evie was actually crushed when I told her we were NOT really going to sleep in it when we got home.

Despite my fears, despite HER fears, we: went horseback riding, made journals, helped "hop" for our table, went out in the row boat just the two of us, tie died shirts, made polymer clay jewels for a necklace, sang songs, roasted marshmellows, swam at the lake front, showered in those public showers with moths flying around that were the size of small birds...we did it...and we can't wait to go back next year and try to do even MORE than we accomplished this year.

And isn't that what life is all about?  Taking steps toward doing things you never thought you could?  I had fessed up to Jeff about two days before the trip that I was TERRIFIED.  But I knew that God would never leave me, nor forsake me...so I knew that I had the biggest most powerful God over all the Universe on my side. 
Whom, or what, shall I fear?

Then, when I had some quiet time and was reading a recent edition of Future Reflections (www.nfb.org), I read an article called, "The Federation in Your Journey; The Courage to Try."  It was written by Mary Ellen Gabias, who is legally blind.  She wrote about a "paradigm" that she has lived with:  DON'T MOVE.  She told a story from when she was five years old and had gone out to play with a friend.  Her mom had said, "Don't go near the side yard.  Workers are repairing the septic tank."  (vol. 32, no. 1, p 1.)  However, Mary Ellen did not heed her mother's warning, and she ran "full speed ahead".  As Mary Ellen said, "Gravity won."  Her mother told her, "You pay a price when you don't pay attention."

Mary Ellen goes on to write that she was so ever grateful that her mother had not said, "Don't Run!  It's too dangerous for you."  However, she also goes on to write that, "A long white cane would have made things far easier for me, but my parents told themselves a story that, along with a tin cup and a handful of pencils, the cane was part of the beggar's badge.  I became afraid to move because I lacked the tool that would have helped me."  (p. 2)

Wow~what a sobering thought.  I DO need to make sure that Evie feels capable to do things on her own, and not afraid that MOVING can be dangerous.  I'm so thankful she has her wonderful Ms. Kay to teach her cane travel.  Ms. Kay gives Evie so much confidence and courage and KNOWLEDGE that she requires to become independent.  I even learned on a cane-walk with them NOT to hold Evie's hand, and NOT to try to assist her on the stairs.  Stay out of her way, she knows what she's doing when she has that cane in her hand.  On several of her walks this past week, I have been trekking right out onto the street to cross and Evie has stopped and checked and listened...ooops.  Do I ever feel sheepish then! 

So, Evie has her share of bruises, and bumps, and blemishes.  But, really, that is a thrill to me at this point in time.  I see that she is not afraid to be a kid.  I think that is a big accomplishment, and something we can continue to build on as we deal with her anxiety, and as we deal with school becoming more difficult, and as we deal with the heart aches that come with being a teen ager in the next few years (yikes!). 

And I'll be praying for her AND for me.  That I shelter when sheltering is required, and I let her soar when her she's just itching to get out of the nest.