The Tears of Silent Sparrow

 

Evie and her instructor on the corner of a busy street.

Today we had tears...lots of tears during our orientation and mobility lesson. 

Evie's been using a cane since she was 3 years old. But that doesn't mean she "relied" on the cane, and that doesn't mean that she used it to independently navigate busy or dangerous terrain. 

Now that we are looking at her starting college however, the game plan has changed and we need to change with it. 

And it's scary.

And it HARD.

Nobody likes to see Evie cry...it's heartbreaking...it's like seeing a baby bird who is injured. 

But tears are necessary because they reflect her realization that she can't fake her way through a lesson on her own positive attitude. No, sometimes it takes hard work, mind-bending work, gut-wrenching work. 

On the corner of one of our busiest neighborhood streets we saw her reach her breaking point today. The realization that life isn't safe. The realization that cars, speed, and distractions can equal injury and harm. The realization that there are no promises and there aren't really any shortcuts to true independence. 

It's terrifying as a parent of a child with disabilities to hear people speak so lightly of crosswalks, speed limits and handicap parking spots as if they shouldn't have to be bothered with these inconveniences because they are slowing them down or moving them further away from where they would like to be. 

All we are looking for is a way to keep our loved ones safe! 

Ultimately, though, I come back to one solution. My only solution. 

The government cannot save us.

The money cannot save us.

The rules cannot save us.

The Law cannot save us. 

Only God can save us. 

If I look anywhere else for solace, safety or salvation, I will be disappointed. 

You hem me in behind and before, and you lay your hand upon me. Psalm 139:5 

Hem her in, Lord. Hem in her in. Keep her safe in this crazy, broken world. Lay your hand upon her. 

If You Give a Kid a Cane...

 

If you give a kid a cane, she'll want to take a walk outside.

You'll take her on one of your favorite scenic walks, and she'll probably notice all of the birds and wildlife.

She'll ask you for more knowledge on that wildlife, and when you give her that knowledge she'll probably want to go to college to learn more. 

College will be so exciting that she'll want to go to grad school!

Then she'll be busy writing papers and being a teaching assistant. 

She'll need a new outfit for her first job interview. 

So, you'll have a fun shopping trip before she flies off to DC. 

She'll interview at the Smithsonian Museum of Air and Space. 

While she's interviewing, she'll realize how much she loves the hustle and bustle of the city. 

She'll get the job and then she'll have to move!

So, you'll hire movers. 

When she's packing, you'll find all kinds of old momentos of growing up. 

You'll play cards, and boardgames, and flip through some of her favorite books from when she was younger.

Then she'll want to see some of her first braille books that seemed so difficult to read back then.

So, you'll run to the closet and pull them out, 

You'll read Freckle Juice, and Frog and Toad, and If You Give a Pig a Pancake...

Then you'll pull out her first cane from when she was 3 years old. 

It'll seem hardly tall enough for an American Girl Doll to use, 

and she'll want to try it out for fun,

and you'll laugh at how tiny it is. 

She'll decide she wants to take it to DC with her as a keepsake. 

Then she'll probably hug you. 

And chances are, 

she'll thank you for believing in her and pushing her to grow, 

then she'll want to take a walk with you again before it's time to go off to her new, independent life. 

Inspired by the Laura Numeroff "If You Give a Pig a Pancake" book series, and by my daughter. 

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)

What I Learned at the Water's Edge ~ Guest Blogging Day

Then behold, men brought on a bed a man who was paralyzed, whom they sought to bring in a lay before Him. And when they could not find how they might bring him in, because of the crowd, they went up on the housetop and let him down with his bed through the tiling into the midst before Jesus. When He saw their faith, He said to him, "Man, your sins are forgiven you."

Luke 5:18-20 NKJV

The Child: I shuffle along, kicking up the dry mountain dust, coating my tennis ball in a thick clay-like film. My white cane hits a gnarled tree root that rises up out of the ground. The cane is stuck in the root and its handle slams painfully into the my hip bone. I let out a groan and wince from the sudden jab of pain. I hear my mother inhale sharply in response to this, and know she is frustrated again by the surroundings and the difficulty we are both experiencing.
The Mother: I see my daughter tripping along the rock, rooted, dusty path down to the lakefront. Last night I was in tears in our cabin at camp. I was sweaty, sticky with bug repellant, and tired from the numerous trips to our cabin from the car full of our sleeping bags, pillows, baggage and more. I didn't have a daughter who could carry her own things, so I needed to carry both of our belongings myself.

I was hurt by the "looks" at my daughter from these new peers who did not know her. The looks communicated fear from some and pity from others. None of these felt good to my heart, and I heard the rush of fear rumbling through my head as I experienced a feeling of rejection that I had not known in several years.

Now, the next morning, we are trekking down to the lakefront ahead of the rush of kids in order to try to safely navigate the rocking, dusty, uncertain path straight down into...what? For what? I feel my daughter stumble and my shoulder burns with pain as I squeeze my right hand around her wrist and strain to help her stay on her feet. I take in a sharp breath to try to lessen the intensity of my pain and keep my eyes from tearing up.

Continue reading on Comfort in the Midst of Chaos...

She's Not as Blind as You Think ~ WAGR Wednesday

Today is national White Cane Safety Day in the United States.  (Some states recognize it as White Cane Safety Day, and others White Cane Day).  The US Congress designated October 15th as the official day of observation back in 1964. In recognizing the day on a national level, the accomplishments, independence, and contributions of people who are blind or visually impaired has been more widely celebrated and acknowledged.

In recognition of White Cane Safety Day, I decided that today's WAGR Wednesday piece should be about what vision is like for our loved ones with WAGR. 

Here are three things I have heard over all of Evie's 10 years:

"Oh, she looks so tired..."

and

"I don't think she's as blind as you think she is," or "I think she can see more than you think she can."

and 

"Won't glasses help?"

First thing's first, the sleepy baby...

Age 1~Trying to see her world.

People with Aniridia have no irises...the colored part of your eye.  The iris acts as a protective device against many factors that wage war on the eye, one being LIGHT!  That being said, you can imagine how BRIGHT things are for those with Aniridia.  Being all pupil, Evie is VERY photo-phobic and often will wear her sunglasses even on the cloudiest of days.  Yes, she often will look sleepy because she won't open her eyes extremely wide as one might usually do if the iris is there to protect the eye from bright light.  

Another thing that many people with Aniridia experience is ptosis of the eye.  This is a droopy eye lid, which varies in severity from case to case.  In Evie's case, she spent the first two years of her life gazing through about a 1/4 inch slit of space to see the world around her.  As she became more able to manage her gross motor movements, she would hold her right eye lid up so she could get a better view.  She never touched her left eye, and that's because her brain may have never learned to use that eye as she had undergone several surgeries on that eye due to her glaucoma.  When Evie was about 22 months old, she had a surgical procedure to lift those eye lids so she wouldn't have to do all the work herself.  What a difference that made, but she still has a "sleepy" look about her at times, so we still hear about how "someone needs a nap."  

After Evie had her Ptosis Surgery

I don't think she's as blind as you think she is...

Evie runs around, climbs stairs, swims, dances, rides horses, writes, reads...so, people who aren't familiar with the variations in blindness often don't think she's blind.  There are many factors, however that affect the level of visual acuity one has.  Take for example the fact that Evie has had consistent vision since birth; she has not LOST vision and she has not GAINED vision.  So, if it's all one knows, than one may be very comfortable with that level of vision.  She learned to run without seeing out of her left eye, and only seeing a blurred vision through her right...she learned to read with just a blurred right eye...she learned to dance with no peripheral vision and just looking through a blurry right eye...IT'S.ALL.SHE.KNOWS.

What you don't know CAN hurt you...if Evie doesn't know there's a post on her left, she will run into it.  If Evie doesn't see the car mirror on the left when walking through a parking lot, she will run into it.  If Evie hasn't been to this house before and races through the kitchen, she will trip over the cat or dog food bowl and slam into the counter on her left.  If Evie is supposed to be following a circle of cones and running in a circle around them, but they are running counter-clockwise...she will run in a direct line straight out because she can't see the cones on her left.

Jenny (from England) and Evie at WAGR Weekend 2013

Yes, she is, indeed as blind as I think she is.

Evie's white cane has given her tremendous independence and safety.  She has been using it since she was three because we learned at a conference that kids who start with their cane at age three are less likely to reject their cane as they get older, and others have learned to see the cane as "part of them."  PLUS...Evie's vision is very fragile...we could wake up tomorrow and it could be worse than it is today, (it sometimes goes that quickly with Aniridia, cataracts, dry eyes...all of dangerous factors that can pop up quite unexpectedly in our WAGR world).  We want Evie to know how to use a cane before she is DEPENDENT on her cane...why wait and put the pressure on her when she'll be adjusting to other changes in life?  Let's do it now.  

 Can't glasses help???

Glasses help to correct the refraction of light that comes through the cornea and the lens of the eye.  But, get this...in the eye of a person with Aniridia, the main problem with vision is that there are not enough cells at the back of the eye that will transmit the messages received by the eye to the brain. (Aniridia Network)  While some people with Aniridia DO wear glasses, it is to help them with the same type of near-sightedness or far-sightedness that we are used to hearing about in people with typical eyes...it does NOT help the type of vision loss that comes from Aniridia itself.  

This was a longer post than I'm used to doing...so, if you made it this far, CONGRATULATIONS!  For me, White Cane Safety Day was a day for me to learn more and tell more.  I appreciate all of you who join me in recognizing this day which celebrates the accomplishments of such extraordinary people.