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. 

We Interrupt Your Regularly Scheduled Life ~ Guest Blogging Day

Evie in the Hospital following her Wilms Tumor diagnosis in 2005

When he had finished speaking, he said to Simon, 

“Put out into deep water, 

and let down the nets for a catch.”

Simon answered, 

“Master, we’ve worked hard all night 

and haven’t caught anything. 

But because you say so, I will let down the nets.”

Luke 5: 4-6 NIV

This past weekend I had the pleasure of attending a conference in Redding, CA called GrowU.  One of the "top billed" speakers of the event was Chris Brown, who is one of my favorite storytellers because he has a tremendous gift for bringing scripture to life.  

On Saturday night he retold the story of Jesus choosing his first disciples.  And, when Mr. Brown re-tells this story, you suddenly realize how God chooses us today in the very same way as He chose people back in biblical times.  

When you read Luke 5, you read about some fishermen who are cleaning their nets and Jesus asks Simon to take him out in his boat so he can speak to a crowd who has gathered on the shore.  Now, fishermen fish at night, which means, if Simon was in and cleaning his nets, he had just been out fishing all night long.  

Working hard.  

He was exhausted. 

And Jesus comes along and says, "Hey, can you take me out in your boat?"

Ugh.

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

Stop, Think and Feel ~ Guest Blogging Day

Whoever is patient has great understanding, 

but one who is quick-tempered displays folly.  

Proverbs 14:29 NIV

God has been working on me and my patience as I've gotten older. He continues to show me more and more of how foolish I appear when I am angry. A recent sermon that I heard at our church was on the topic of anger and how to rid your life of anger. It was tremendous because the most important thing I gleaned from that sermon was the fact that my ANGER is ALWAYS the band-aid on top of a different emotion.  

Take for example my experience recently in trying to start a dialogue with a number of different people in our state assembly or even those in my own city regarding Rare Disease Day. I had sent in my proclamation request to the state in the month of November and had e-mailed a number of different people in the middle of January trying to drum up enthusiasm for the event. However, I found that I wasn't getting responses from anyone!

I was so ANGRY. I had that feeling of, "Of course, here we go...no one cares."

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

Why the New "Full House" may NOT Work for Us~WAGR Wednesday

I'm listening to Evie upstairs... 

It's been a bad 1/2 hour.  Just 45 minutes ago, I was watching her sit in the recliner with her legs tossed carelessly over the arm in a "regular kid" kind of way.  She had her iPad in hand and was watching "Sam and Cat."

"Do you want to watch that on the Apple TV?"  I asked.  

"No, I just want to watch my iPad."  

Ok...no big deal.

        Until...

"Mommy, can we watch "Sam and Cat" on the Apple TV by mirroring?"  

Now, for any Apple households out there, that didn't sound like a foreign language.  But, for those who don't know, the Apple TV allows you to watch things from your iDevices on your TV...you can simply watch the videos and TV shows on there through your iTunes accounts.  That's what we normally do. 

However, what Evie was requesting was a feature called "mirroring" where you can transpose your iDevice screen onto your TV via the Apple TV.  So, either way, you could watch something on your TV that you would normally watch on your iPad.

Except tonight it wouldn't work. 

The iPad was giving us some message about the show being protected and couldn't be "shared" onto the Apple TV.  No problem, right?  Nope.  BIG PROBLEM.  She didn't want to just watch her show on Apple TV...she wanted it MIRRORED!!!

Seriously, watching it ON the Apple TV rather than mirroring?~It would have looked the same, sounded the same, lasted the same amount of time.  It would have been EXACTLY the same. 

But not to Evie.

      Because of anxiety.

            Because of WAGR.  

Because something happened today, or happened over the past two or three days which built up, and built up, and built up into one great big colossal meltdown. 

We went from Snow White dancing 

while the bluebirds perched on her shoulder 

to the girl in Poltergeist spewing vomit 

while her head spun around 

in a split second.

So, this takes me to why the new "Full House" on Netflix just might not work for us.  It may...don't get me wrong.  We'll give it a shot...but, I'm preparing myself for the disappointment.

First, if the entire cast is not there, we will be asked over and over again WHERE the missing characters are.  "Why isn't Joey there?"  "What happened to Rebecca Donaldson?"  "Why is there no Comet?"  As we try to answer the questions we will be missing the entire new episode which will lead to even greater confusion. 

Secondly, the actors, if the same actors return, will have aged and may be unrecognizable.  Did any of you parents out there live through the changing of the Marinas on "Fresh Beat Band?"  You know what I'm talking about!  Let's face it, we KNOW that Jesse and Rebecca's twins won't look the same, and we know that DJ will not likely have married Steve...

Thirdly, they won't all live together.  Even now, Evie watches, with great angst, the episode where Jesse and Rebecca consider moving out on their own.  "Where will they go?"  "Are they going to move, Mommy?"  "Where will Jesse live?"

Ev, you have seen this episode a number of times, 

you KNOW they don't move out.

So, as much as I'd like to believe that the new Netflix continuation of "Full House" will be a thrilling event in our home, I have my reservations.  Evie's brain gets into nervous knots, and the best way to untangle them is with things that are familiar and repetitive and predictable.  Life rarely appeases that need.  But, we try to safely introduce new and exciting things which can eventually become familiar and predictable as well. 

Well, it's now an hour later.  Things are a bit quieter upstairs.  I still hear her crying.  I still hear her trying to talk herself into a comfortable place in her brain.  In the midst of the meltdown I gave her medicine and Daddy has brushed her teeth, given her eye drops.  She's been back downstairs to apologize for hitting me and having a tantrum, because she "really misses Peppa [Pig] and really can't go to bed without watching an episode."  

She's slept in a hotel, traveled hundreds of miles to San Francisco to be examined and have bright lights shined in her eyes, been talked about regarding her vision, been to the cardiologist and had her weight, her heart surgery discussed, been up early and in bed late, and been to school where they are prepping for major testing next week.  I KNOW this kid is under stress.  I wish I could take it all away from her and tell her that she'll never have to worry about another doctor taking pictures of her heart, or her belly, or her eyes...but I can't.  

I can't help but to be there and to let her watch a "Peppa Pig" episode despite her behavior, because it's the best thing for her soul right now~that...a maybe mommy or daddy saying in that "Full House" sort of way:  

I'm there for you, Babe.

New Angels, New Feelings ~ WAGR Wednesday

As a Mom:  I mourn for my friends who lost their babies on Valentine’s Day.  Two moms with two children no longer on earth but risen to Heaven far too soon.  Fear reverberates in my heart; please, God, never mine, never mine.  And then I feel selfish, and try to focus on their loss rather than my fear.

As a WAGR Mom:  This is the worst.  This is my fear.  The cancer comes back and eats away more and more of the kidneys.  It was looking okay and then it went terribly wrong.  The lifespan is unknown.  The research isn’t there to convince our doctors to scan more frequently even though they are older and “out of danger.”  Is this just one instance?  Is this “odd”?  Yes, Doctor, it is.  But:  Isn’t WAGR odd?  Isn’t my kid one of the “only” cases of WAGR that you have seen?  

As a Friend:  I’m sorry Amy.  I’m sorry I didn’t get to see you before it was too late.  I’m so glad I got to spend time with you at Cedar Point last summer, and I’m glad we talked about your cancer camp, and Law and Order: Special Victims Unit.  I’m so glad you liked your pillowcase.  I’m so glad to know that you’re out of pain.  I’m glad you didn’t have to lose your hair again…you had such beautiful hair.   WAGR Weekend will never be the same without you.

To "S", I'm sorry you had to go through this and you lost your baby girl.  I wish I could be stronger for you and not cry when we talk.  But, that's me, the crier.

And to my friends “T,””H” and “Ms. A” I’ll cherish the fact that we had your Lil’ “A” in MN at WAGR Weekend.  I can’t imagine what you’re going through; but I’ve seen your strength, and I know you’re a WAGR family, so I know you will persevere and thrive.  

As a Leader:  I wish I had answers for all of you.  This was a shock for me too.  This was a shock for all of us.  But I am overwhelmed by the strength and love you are all showing our WAGR Family.  I’m so blessed to be a part of this group.   

What gives us the strength that people see in the Heftys?  Our faith in God and our families:  our family by birth and our family by WAGR.   

I have to laugh when people say, “You’re the president.”  I don’t feel like a president.  I feel like someone who is on-line A LOT, and studied public speaking and argumentation; so, I guess I have that going for me.  I feel like someone who was inspired by her grandparents and parents who took leadership roles in advocating for people with disabilities; so I followed a similar path.  But president?  I feel just as “fish out of water” as all of you do today.

As a Griever:  I can’t lay in grief for long.  On the day my dad died, I took my girl to the waterpark.  Why?  Because I know that if I mourn for TOO long, I can’t pull out of it.  I’m sorry if I look calloused.  I’m sorry if I look “back to business as usual.”  But I know my own weaknesses, and depression is one.

As a Christian:  From the moment we are born, we are dying.  This world is dying.  This world is getting worse by the day until the ultimate end which will be terror beyond our wildest imagination.  We will see sorrow, we will feel pain, we will think “What kind of a God???”  But the same God who wrote these stories of untimely death, also brought his own son an untimely death which is why I CAN move on each day…knowing that my sins are covered, knowing that I will live for eternity, knowing that death is not the end, but a beautiful beginning.  

This WAGR Wednesday was more for me than anyone else.  For me to process the various emotions that I’m feeling.  For me to stop worrying about what others think of my response.  For me to encourage others to do the same.  

Write what you are feeling.   

• What are the feelings that you aren’t ashamed of?   
• What are the feelings that you ARE ashamed of?   
• Why do you think you’re feeling this way?   
• Are the feelings different based on the different roles you play in life?   
• Is it a regret of something in the past; you can’t change it, so will worrying about it help?  No.  
•  Is it a fear of the future; is it something you can control?  If you can’t control it, you can’t change it, so worrying won’t help, it will just rob you have joy. 

For me, when the fear becomes gripping, I start to list my blessings.  Do that now too.   

• What went RIGHT today?   
• What made you giggle?  
• When have you felt safe in the past?  What MADE you feel safe?   
• Do you have friends who rally around you?   
• Do you have family that you can always count on?   
• Do you have an employer that is supportive of you and your family?   

Not EVERYONE can answer “yes” to all of these questions.  These are blessings.  Fill you mind with your blessings and the fears will scatter and hide.  

This IS when it hurts like thunder…but the clouds WILL part and the sun WILL shine again.

The Ticking Timebomb They Sent Home from the Hospital

I'm sure no one thought that when they stuffed the folders at the hospital to send home with new parents they were placing in those folders a time bomb.  

Tick...tick...tick...

A free ninety days (or something like that) of a life insurance policy for your baby named after a popular baby food brand.

Tick...tick...tick...

We took our folder and our baby home, having just learned that she had something wrong with her eyes called aniridia (lack of iris in the eye) and that she might have a rare disease called WAGR Syndrome.

Tick...tick...tick...

WAGR...W~Wilms Tumor (Kidney Cancer), A~Aniridia (Possible Glaucoma, Cataracts, Blindness, and more...), G~Genitourinary Abnormalities, R~Range of Developmental Delays.

Tick...tick...tick...

We were told by our doctor that babies normally eat, sleep, and poop.  If our little girl was doing that, we were just fine.  In the meantime, we were waiting for the results of her genetic testing to confirm or lay to rest the theory that our lives were about to change dramatically.

Tick...tick...tick...

One day, I decided to go through the folder from the hospital.  My maternity leave was filled with fear; I was learning to be a mom for the first time, but at the same time, I was afraid that our baby wouldn't grow old enough to even wear an 18 month sized dress we had received as a gift.  I kept myself as busy as I could, and even filled out the flimsy leaflet that was the application for the life insurance plan with a perfect baby face on the front of it.

"List any health conditions the baby has..." it said...

"Aniridia and possibly WAGR Syndrome" I wrote...

Wasn't I naive?

Tick...tick...tick...

A letter arrives in the mail with a perfect baby face on the front, and the perfect baby lips shaped so naturally I could almost hear the coo.

"We regret to inform you that your baby doesn't qualify..."

Tick...tick...tick...

"This by no means is any indication that we don't believe your child will live a healthy life..."

Kaboom...

...This is life with a rare disease...
...This is life when you feel you may be the only ones...
...This is life before we found the International WAGR Syndrome Association...
...And this is why I, from that day forward, refer to the "anonymous" company's insurance policy as the "Blankety-Blank Throw Up Plan"...

BTW, Blankety-Blank Company, she's 10 (and a HALF) now!

Telling Your Story

If you've never written about receiving a rare disease diagnosis for you or your child, now is a good time.  Rare Disease Day is just a month away, and you can share your story to a large audience and put rare disease on center stage for a day. 

•   Start by identifying your theme.  Do you want to talk about receiving the rare disease diagnosis?  Handling appointments with doctors, therapists, etc?  How your friends and  family responds to a rare disease diagnosis?  Difficulty in accessing good medical care?
• Draft a timeline.  This helps to get your thoughts in a chronological order and will help you recall details that you might otherwise forget to include.  The timeline could be your child’s life up until now, or could just be a specific timeframe like infancy, school years, Wilms Tumor treatment, etc …
•   This is the step I call:  “Throw-up on the paper or the screen”.  In other words, just start typing or writing now that you have laid out a timeline of the events surrounding your theme.  It’s much easier to “tweak” your writing once you have something written out.
• Read through what you’ve written.  Have you made it personal by writing “I” and “we”?  You want to when you are sharing your story.  Have you used all your senses to describe events you wrote about?  Sights, sounds, smells, and the feelings they generated within you.  Have you identified who, what, where, when, why and how?  Be sure to keep privacy for doctors and others by either saying Dr. S or using alias names if you haven’t asked their permission to write about them.
• Have another person read and make grammatical corrections and other suggestions for helping to expand or condense your story.
• Make sure the first paragraph and the last paragraph engage the emotions of the reader, and also point to the theme of your story. 
•   Ex.  Our daughter’s rare disease diagnosis came on the third day of her life.  We had all of our dreams and securities ripped from our hearts.  Suddenly our lives; rather than filled with plans of visiting friends and family to show off our newborn, became filled with doctors appointments, therapist visits, and a scramble to obtain additional insurance to cover our new medical costs.
•   Ex.  While we are 10 years into our journey, we still wrestle with fears of the unknown future for our daughter and her rare disease.  We rely on researchers and lawmakers to take notice of the rare disease community to grant us more security here on earth and to help point us toward and brighter tomorrow.
• Share your story!!!  There are a number of ways to do it, but first visit http://www.rarediseaseday.org/tell-your-story/ and click on the “write your story” icon…you can copy and paste your story and share it with the world.  Post your story on Facebook in your Notes section.  Send your story to your state and national leaders-e-mailing them is easy off of your government’s website.  Be sure you use #raredisease #rarediseaseday and #NORD if you are sharing your story on social media.

Sometimes it's Not the Lions; It's the Flies~WAGR Wednesday

When you first learn that your child has WAGR Syndrome, there are a few things that stand out and cause fear deep within your core:

Your child's heightened risk of developing cancer (Wilms Tumor)
Your child's heightened risk of being blind
Your child's heightened risk of experiencing kidney failure (Focal Segmental Glomerulsclerosis)

But, sometimes, it's not necessarily these "big things" which cause the most heart-ache.  Sometimes it's the "little things" that can eat at you day after day. 

What makes me think of this is an article in the New Yorker from April of 2014 which reveals that a recent study found the most likely reason that zebras have stripes is to prevent biting disease-carrying flies from landing on them.

Flies?

Really?

What about lions?  

         Wildebeests?  

                   Cheetahs?

Zebras, having each of them a unique pattern, size, distribution, and boldness of stripes, appear to have more stripes and a bolder pattern in the areas of the world where they would run the risk of being bit by flies.  According to biologist Tim Caro, "We found again and again that many stripes or intense striping is associated with areas that tend to have many biting flies over the course of the year."  (New Yorker, 4/2014)

This started to make sense to me as I thought about the "little things" that tend to take up a lot of time and create a lot of heart-ache as a parent of a child with WAGR.

Developemental Delays:  As our babies grow, become toddlers, become school aged; we start asking, "When should they be walking?  When should they be talking?  When should they be potty-trained?"  We have NO CLUE what developmental milestones our child will meet, or IF she will meet them at all.  I recall getting mailings every few weeks from the hospital where Evie was born in Madison.  They would say, "Your baby should be...." and it would list all the things she should be doing at that age.  What a horrible mailing to receive while I watched my child fall further and further behind her peers.  I began to just dump those mailings in the trash upon their arrival. 

Ouch...fly bite.

Sensory Processing Disorder:  Head-banging, biting, hair pulling, hitting, screaming...Evie did all of these as she transitioned to her toddler years.  Where had she learned this from?  We felt helpless, and, at times, frightened by how we would live day to day with these kind of behavior issues.  I never wanted to go out, I never wanted to take her anywhere that would "throw her off."  Once I read "The Out of Sync Child," and started to realize that Evie's issues were sensory in nature, and not just a complete hatred of me, her mother; I started to look for ways to LIVE with SPD.  We got Evie into out-patient occupational therapy at a hospital in Madison and life became so much more enjoyable.  But, up until that point, I felt like I lived in a tremendously deep hole out of which I could not climb.

Ouch...fly bite.

Loss of Friends:  As much as people want to be "open to it" and want to say, "your child is no different," we have seen friendships fade after having Evie.  You start to realize that your "group of friends" got together without inviting you.  The reason?  "We know it's hard for you to get out."  "We understand that it's hard having a child with disabilities."  "We didn't want to pressure you."  No.  That's a nice reason which helps these people sleep at night.  It's actually that they don't know how to relate to us anymore.  They don't understand WAGR, or disabilities, or blindness, so they don't want to have us ALL get together, and have no idea how to answer their OWN kids' questions; so, to avoid the uncomfortable situation, they no longer invite you.   You really DO learn who your real friends are when you have a baby born with special needs.

Ouch...fly bite.

As was pointed out in the New Yorker article, "while a single bite from blood-eating flies extracts just a tiny droplet of blood, thousands of bites per day can add up to significant blood loss."

I can't reiterate that enough.  Our daily "fly bites" are Significant.

It's hard to sleep at night when you're wondering if your child is crying because she's in pain from a stomach flu, teething, cancer or pancreatitis.  It's hard to wake up and do your hair and put on make-up when you wonder if you'll just end up crying it all off because your daughter bit you and had a meltdown.  It's hard to pick up the phone and call your sister because, when your child hears your voice in "talking on the phone" tone, she comes into the room and immediately demands your attention by yelling and whining, and then proceeds to throw herself against the wall, bang her head on the floor, and bite her hands.  

It's just plain old hard.

So, while cancer seems to always get everyone's attention with WAGR, when our kids are diagnosed with Wilms Tumor and our world suddenly becomes filled with people who want to help, want to bring food, want to send you a gift card, want to watch your kid so you can do some laundry (don't get me wrong, we DO appreciate these things)...we could really use those people to surround us on a daily basis in between the meltdowns and specialists; to celebrate the first step at age 3 or the first time they used the potty at age 5.  We could really use the friends calling us to say, "I know you're busy, but I was hoping we could all take the kids to the park and have a picnic."  We could really use people who want to learn more, want to help support us, want to come with us to a WAGR Weekend so they can meet other families with WAGR, or want to read our newsletters so they can get a  better glimpse into our WAGR World.

The best fly repellent for us; the rarely understood, is love, compassion, and inclusion.

When the Heart Hurts ~ WAGR Wednesday

Photo by Erin Moore Photography

Yes, my daughter is legally blind.  Yes, she is a cancer survivor.  Yes, she has high blood pressure and the possibility of kidney failure down the road.  Yes, she is developmentally delayed. But what do I fear the most?

Her heart being hurt.

I was picked on as a kid, and I know how much it made my heart hurt.  I don't want to see her go through that.  But here she is, a ten year old who still sucks her thumb.  A ten year old who is scared to lock a bathroom stall door for fear of being locked in.  A ten year old who, when the rules of the "game" change, or when someone doesn't WANT to play it her way, will break down into tears and not listen to reason. 

I feared it a "little" when we lived in WI, but that started to wane as we were becoming more and more woven into the fabric of the community.  I saw how the kids loved her, her good parts and her not-so-good.  I saw how they just kind of attributed some of her quirks to "that's Evie."  So, when we decided to follow God's plan to take us 1800 miles away to Nevada, it was the social changes that made my heart hurt the most. 

School work, we can deal with. New doctors, we can work through.  Getting new medicaid coverage, just a matter of time and mountains of paperwork.  But, friends...friends?  How do you establish the same types of friendships that took nearly a decade to create?

Last week, the ugly beast of Evie's anxiety reared it's ugly head.  Her amazing group of girlfriends were at recess with her, and they had planned to play school (just like Evie loves to do), but then some decided that they DIDN'T want to play school.  I guess that didn't go over well, and there were tears from Evie...and, if you've ever seen the tears and reaction to "plans changing" for her, well...it can get pretty dramatic.  The teachers took care of the situation, and that was great.  I didn't really think anything of it, because it didn't seem to bother Evie all that much, so I thought, "no big deal." 

Until Monday...

I'm used to seeing the girls surround Evie and just kind of absorb her into the flock when I drop her off in the morning.  They USUALLY give me a big hug, and start chatting about their weekend, while Evie is, not-so-subtly, trying to get me to leave.  But, on Monday, there was an odd silence when we approached the spot where her class lines up.  The girls were already involved in their own conversations, they looked up at us and smiled, but Evie didn't get sucked into the circle like she usually does. 

I saw the blank look on Evie's face, like there were gears turning, but she didn't quite know what to think. She just stood there, staring at the circle of girls.

"How about if I stay and we can chat?" I asked.

"No." said Evie, not removing her eyes from the circle.

A girlfriend strolled by and said, "Hi, Evie, how was your weekend?"

"Good," Evie replied with a smile.

"I'm going to go get in line," said the friend, excusing herself.

Evie turned around and went to the back of the line of backpacks that held the students' places on the ground.  Still the circle of girls didn't break up, or open, or invite.

Why did this feel so tense to me?

A boy walked up to Evie and started talking with her, so I carried Evie's "big book bag" over to her (it holds her assigned reading which is enlarged so she can read it with her low-vision).  I set it down and gave Evie a kiss.

"I love you, Peanut and I'm excited to see you after school, and then tomorrow is a no school day, and we can spend the whole day together!"  I said, adding the last part as a comfort, more so for me than for her.

On  my way out of the playground, I tried to hold back the tears.  Thankfully, my sunglasses helped mask my blinking eyes.  I started to recall the story of the playground drama from Thursday (we had Friday off of school)...and I realized that the awkwardness and tension may have been coming from that.

Oh no...my worst fear!  They had seen a meltdown and now things were weird.  To use my Minnesota-Girl vernacular, "Crap."

I had a lot of other things on my mind that day too:  The medicaid paperwork was due and I hadn't had a callback yet from my two messages I left with questions on how to fill it out; I still didn't have access to Evie's chart at her new medical specialist's office, so I didn't have a way to get them some necessary documents; and I was trying to figure out how to prove to medicaid that Evie doesn't qualify for SSI when a parent can't sign a child up for SSI on-line, so you have to go to an office and do it in person, and yet I only had a week to get the papers back to the Las Vegas office. 

I became a complete emotional wreck. 

This is when the heart REALLY hurts.  When all the weight of WAGR piles on and you don't know how to fix ONE let alone ALL of the problems. 

Evie's SPED teacher phoned me in response to a distraught e-mail I sent her.  We agreed that this is a difficult situation.  That the kids need to learn not to take this type of thing personally; that it's Evie's inability to cope with change well, and that it's okay to not let her get her way.  I wanted to let the teachers to know that I don't expect kids to play with Evie if she's being difficult; that we can give her a choice to play cooperatively or to have some alone time, but that demanding everyone do everything her way is not an option.  I'm so thankful for her teachers who are so eager to help Evie "fit in" and yet teach her the right way to socialize.

Thankfully, we had yesterday off of school, so I was able to protect my bird the way a momma bird does.  Today when I dropped Evie off, it seemed like things were back to normal for the most part.  Her friends were enthusiastic and welcoming and warm. 

Maybe I had over-reacted.  Maybe I had let me own  past hurts affect how I saw this situation.  Maybe there were a bunch of other reasons why Monday morning felt different.  I'll never know.  But I do know that I wanted to share the heart-ache that we feel as parents of kids who are "different".  That sometimes, the medical fears play second fiddle to the socialization fears. 

That sometimes the heart.
                                       just.
                                             hurts.

Patience as Patients ~ WAGR Wednesday

Photo of Janet (Ms. Jackson, if you're nasty) couresty of http://welove3t.weebly.com/uploads/4/3/9/1/4391192/207730_orig.jpg

As I sit here, my bright pink ear piece plugged into my right ear and the microphone/mouth-piece curved down along my jaw line (go ahead, picture Janet Jackson, I'm okay with that), I am listening to broken, fuzzy, pointless music and waiting (25 estimated minutes) for my call to be connected to someone at the Division of Health and Human Welfare somewhere, in some building, in some city here in the great state of Nevada.

I thought I'd take the time to write a little bit about the patience that we have to demonstrate as we meander the rocky river of life with WAGR.

I knew that moving to a different state would mean re-applying for all of Miss E's services.  I knew that we'd be going through an onslaught of "first" appointments in which we may or may not meet people who give a flying fig about a disease as rare as WAGR.  I knew that I'd be applying for a substitute teaching license and would be basically unemployed as we met our annual deductible for our health insurance and paid the bulk of our medical costs out of pocket (Thank God for HSAs!). 

I forgot, however, how much PATIENCE it takes.  

I have patience with little classmates of Miss E who are trying to learn about the syndrome that their new classmate has...can I not have patience with the doctors who are treading into new territory as well? 

I have patience with the social worker who exchanges pleasant conversation with me as she learns about WAGR in our home...can I not have patience with the person who sits in the office and has to take angered call after angered call from people who need their help just as much, if not more, than my family does?

I have patience with the pharmacy that knew us well because they had been in the trenches of medication after medication for blood pressure and glaucoma and constipation from chemo...can I not give a little of that patience to the new pharmacy here who never seems to have a correct co-pay total for me even months into this process?  A lot of information runs through a pharmacy each day.  

"Patience," I must tell myself, "You are here and teaching new people about WAGR.  Someday, when they will hear the term again, they will say, 'Oh, I remember doing this for someone with WAGR before' and that will bring comfort to another family who is diving in to the rocky river for the first time.

Well, I'm down to 10 more minutes of my (estimated) wait time.  Yay, I've used this time wisely!  Had I closed my eyes to listen to the "tin can" music, I likely would have drifted off to sleep and missed the opportunity to talk once it was my turn.  

 I'm not sure if you are aware, but I try to blog often about WAGR/11p Deletion Syndrome, and share my point of view as a mother of a child with it.  There are a lot of intricacies that accompany this genetic disorder, and they are worth laying out on the table so parents and guardians can discuss them with doctors, therapists, teacher, and even friends and family.  

To read more of my WAGR Wednesday posts, just follow this link!  

And, for the record, I just got off my call...it was 56 minutes and 43 seconds long...I had a truly nice chat with Phyllis, who was sweet as could be, and she will get my message to the worker assigned to our case...she requests 48 hours to return calls...

Patience...

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.