Seeing Beyond the Offense and Giving Grace

Evie praising at Lifest 2014

I was driving into the parking lot at a supermarket chain the other day and was cut off by someone coming from the other direction.  The driver was clearly speeding, which startled and offended me; I had Evie in the car with me, and did not appreciate the "near miss" which endangered my daughter.

My instinct was to fume...

But quite instantly I heard a voice inside me say, "How many people did you cut off?  How many times did you speed into a parking lot when you were picking up medications or running in for milk and you needed to get home as quickly as possible?" "Remember when you were working 10 hour days and then taking Evie to chemo appointments the other days?"

You see, reflecting back on when Evie had cancer, I'm certain that I stopped short, cut off, sped by, tail-gated...you name it.  We'd let our sidewalk go un-shoveled.  I didn't return phone calls.  I can't recall if I even sent out Christmas cards.  I think a hurricane devastated a large portion of the southeastern coast, but I didn't care;  

our world had shrunk down to the size of a 15 month old baby girl with a port in her chest, and poison running through her body in hopes of killing a killer.

So, our few months between the fall of 2005 and the spring of 2006 when Evie was being treated for cancer taught me a lot about grace.  Clearly, we didn't have a neon sign on the top of our car that said, "Be kind, their baby has cancer."  "Please, let them through, they're on the way to the ER with a fever of 104."  "New Year's Eve and on the way back to clinic for a dose of antibiotics because complications with pneumonia!"

The fact of the matter is, you may be judging someone who is experiencing the worst period in his or her life.

Give Grace...

Give grace... by letting the heavily sighing woman behind you move ahead of you in line.  /She may have just worked an overnight shift and now be going home to give the kids a meal before she goes to her second job which barely pays for heat.

Give grace... by waving that person in pleasantly; the person who is trying to "cut in"on the traffic when he or she should have moved over a long time ago.  He or she may have been thinking about when the right time is to call hospice for their mom or dad, and never saw the sign that the lane was ending.

Give grace...by shoveling the neighbor's driveway and sidewalk even though they've never done that for you, and usually take too long to do their own.  They may not shovel in a timely fashion because their daughter has cancer, and they can hardly lay her down to sleep at night let alone during the day when she just got her weekly dose of chemo.  (Yes, our wonderful neighbors in Wisconsin often shoveled us out that long, cold winter...they blessed us by never asking for anything in return, and probably weren't sure if we knew it was them.)

Please, see beyond the offense, and give them grace...you have no idea what news they just received, what horror they just witnessed, what tragedy they are experiencing.

The gift of grace is rarer than the sharpest diamond, and more precious than the finest pearl. 

One size fits all and guaranteed to be just what that person needs.

Leave the Negativity out of the Nativity ~ Guest Blogging Day

Photo Courtesy of Imagery Majestic/freedigitalphotos.net

Rejoice in the Lord always. I will say it again: Rejoice! Philippians 4:4 NIV

I'm so thankful that our pastor has been focused on JOY during this season of advent.  One thing I would hate to do is forget about Joy and let the hustle and bustle of Christmas suck the energy and life out of my soul the way that negativity and stress can often do.  In order to train my brain to think POSITIVELY, I have to look at what negative thoughts look like versus positive thoughts.

• Negative Notion                                                               

"I can't believe I have MORE paperwork to fill out for my daughter to qualify for Medicaid.  This has been taking months, and now we have to wait longer???"

• Joyful Juxtaposition

"Yes!  We are one step closer to getting the coverage we need.  AND, I was just able to call a care coordinator DIRECTLY; a REAL LIVE PERSON to schedule our home visit!"

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

Born This Christmas Day...

This is a Christmas of newness for us,

A Christmas of change...

Coffee in front of a fire,

With stuffed stockings hanging just above,

Facetime two and three time zones away.

A quiet morning among the mountains,

A game of Life and maybe Sorry,

And perhaps we'll get a nap!

Dinner with new friends,

Those we didn't know three short months ago,

But our faith has made us family.

A new home, a new school, and new jobs...

But this Christmas, one thing has not changed,

We celebrate the King who came to Save.

Written in response to Sunday Scribbilings 2 writing prompt Born This Christmas Day

You Are Here...Guest Blogging Day

Photo Courtesy of Serge Bertasius/freedigitalphotos.net

The grass withers, the flower fades, but the word of our God stands forever Isaiah 40:8 NASB

Ah, the holidays.  Have you ventured out into the malls yet?  Have you managed to get lost between the anchor stores in some random corner of the mall which may be lined with independent kiosks in December, but will hardly be traveled the rest of the year?

I once worked in the Mall of America; yet, here, I find myself all turned around in the Meadowood Mall which doesn't remotely compare to the MOA in size.  It's unfamiliar territory, as is most of Reno, but it is becoming home now that we've been here for six months.

Isn't our life's journey very much like a trip through the mall?  Some stores are intriguing and enjoyable, as are some stages in our life.  Some stores are crowded, crappy and overpriced...as are some stages of our life.  Some stores are downright overwhelming...um-hmmm...just like life.

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

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.

Freed from Greed~Guest Blogging Day

Photo Courtesy of Pri/freedigitalphotos.net

And he said to them, “Take care, and be on your guard against all covetousness, for one's life does not consist in the abundance of his possessions."  Luke 12:15 ESV

Ah, the holidays are here.  Radio waves broadcast Christmas music and we start to see the trees, lights and other variety of decorations adorning our surroundings.  This is a dangerous time of year for a girl like me.  It's a constant struggle for me to be in stores shopping for others while not giving in to my own desire for another new black sweater, or a cute infinity scarf. 

I'm a serious shop-a-holic.  Really, I am...my heart starts to race, my blood pressure raises, and at times I have to actually walk away from the whole thing because I start to WANT everything.  

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

Where is the Joy?~Guest Blogging Day

Photo Courtesy of Bulldogza/freedigitalphotos.net

I know, O LORD, that Your judgements are righteous, and that in faithfulness you have afflicted me.  O may Your loving kindness comfort me, According to Your word to Your servant.  May Your compassion come to me that I may live, For Your law is my delight.  Psalm 119: 75-77

Some years it feels impossible to find joy during the holiday season.  People are still sick, people are still dying, people are still losing their jobs and losing their homes.  WHAT is so magical about that?

Nothing... 

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

I Have the Right...to Just Get Over Myself

Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart. Hebrews 12:1-3 NIV

This past Sunday at church, we explored Joy.  

What a great word, what a great emotion:  Joy.

But, how do we find joy?  These past few weeks I have had several "situations" that continued to crop up in my life which led me to have my typical nervous stomach.  They weren't even things that all directly involved me, but I still allowed them to create worry and stress in my life.

Where is God when I'm so worried?  Why isn't He working in these situations?  Why is He allowing them to continue?

Then, as we looked at the JOY that Paul speaks about in Philippians, I realized that my problem was that I wasn't humbling myself before God and turning these situations over to him.

 And being found in appearance as a man,

    he humbled himself

    by becoming obedient to death—

        even death on a cross! Philippians 2:8 NIV

I needed to get off my high horse and realize that I had NO control over these situations, and that I needed to give them all over to him.  I needed to be obedient.

 Easier said than done, right?

So, how was I going to get myself to accomplish the task of "giving it over?"  

I had to give myself over to prayer and fasting.

I had to deny myself one of my favorite things in the world; food.

Here's what I did:

I downloaded an app on my iPhone called "Prayer Prompter".  It was a free app, and I absolutely believe it was critical to my successful prayer-fasting day.  I had been concerned about trying to concentrate fully on prayer and figured, "what's the point of fasting if you aren't effectively praying?"  Then you're just not eating for a day.

The Prayer Prompter gave me a way to list the things I was praying for, add details, and then sort them into folders by topic.  What I loved the most, however, was the pre-filled scriptures along the top section of my iPhone screen.  They were parts of scripture sorted into folders based on topics.  "Obedience," "Adoration," "Supplication," were a few of the topics to explore and pray through using the scripture provided.  

The app even allowed me a chance to see how much TIME I spent praying! 

Here was the best thing about my day of prayer-fasting.  Even as I stood and sat in line at the Social Security Administration office for 2 1/2 hours waiting to take another step in securing secondary insurance for Evie, I felt no anxiety whatsoever.  I had been in prayer and in God's word throughout the morning, and found myself talking to all the different people around me who were joining me in the "waiting game." 

This is what I observed during my wait time:

I talked for a half hour with a woman who was a Navy vet with disabilities.  She was going to file again for disability as she still could not obtain a job due to her limited ability to get around.  She and I talked about the mountains, the wild horses, her health, Evie's health, her family in Louisiana, and my family in MN and WI.  I missed her company when we finally got into the building, as she had an appointment and was called back, so I settled in for an unknown length of time to wait for my number to be called.

I noticed how kind the security guards were. They had to keep directing the line of people waiting to get their number back toward a wall to keep a walkway clear.  The guards could have just been annoyed by their job; by the monotony of it, by the fact that for some reason, humans hate to stand in line along a wall.  But they weren't...they were asking people how their holiday was, asking the children if they were excited for Christmas, offering chairs for those who were having a hard time standing.  Would I have seen that had I been absorbed in myself, my to-do list which wasn't getting done, MY rights~MY kid's needs~MY understanding of what MY family is entitled to?

I watched the couple next to me who were playing with their toddler girl and trying to keep her quiet enough so she didn't wake her baby brother in his car seat.  Dad would tickle the girl and she would say, "No, Daddy!" and laugh, but then would say, "Do it again!"  She reminded of Evie.  What was that family there for?  Did they need money?  Was one of them sick?  Had there been a death in the family and they were there to secure some of the final papers that needed to be filed?  I didn't know, but DO know that I would have never found as much joy as I did in their presence had I been more concerned about MY space, and getting bumped as the little girl jumped around, and the lack of foot room with a baby carrier and diaper bag on the floor.

Two and a half hours in, my number was called. For weeks prior to this I had been fighting the fact that I needed to do this...it didn't make sense.  We had gone through this process in WI, WHY did we need to go through it again?  Why?  Why isn't it easier for us?  Why?  I had visions prior to prayer-fasting of walking up to the window and sarcastically explaining why I was their and how stupid the system was, and what a waste of time this was. 

But, with this new mentality; humbling myself, lowering myself from a position of importance in my own eyes, denying myself "rights" to food and "me-time", I went to the window and explained that I needed a denial of SSI for my daughter in order to complete our application for medicaid.  I said, "Is that something we can do today, they've only given me until Friday to get it?"  She smiled and said, "I can get you that letter right now."  Within minutes I had the letter...the letter I had been fretting over for weeks, the letter that I was fighting to deem as "a waste of MY time." 

When I walked out of the office and into the warm December day, I had a smile on my face.  A woman who had been finishing her cigarette outside, who I know had been waiting there for an hour or more, looked at me and said, "Oh my goodness.  You're so pretty."

And that's how I know that I was successful in my prayer and fasting yesterday...not necessarily that I had any of my prayers answered (not that I know of yet)...but that she had clearly seen Jesus...
                  reflected
                                in little old me. 

Image found on Pintrest from Carleigh Rose

Living in the Gap ~ Guest Blogging Day

Photo Courtesy of Evgeni Dinev/freedigitalphotos.net

I have given them your word and the world has hated them, for they are not of the world any more than I am of the world. John 17:14 NIV

We were in the car a couple of weeks back, on our way home from Lake Tahoe and we passed the sign on I80 which read "Emigrant Gap."  Having recently visited the museum on Donner Pass, and been freshly familiarized with the tragic story in America's history of the Donner Party, I started thinking about what the Emigrant Gap actually represented.

I started to research "Emigrant Gap" and found that it actually is a city in California.  But, along with that, I found out that, according to the Office of Historic Preservation, 

The development of discovery of gold in California is due in no small measure to the men and women who came by the California Emigrant Trail and who stayed to build our state. No other method of entry can parallel it in danger, privation, fortitude and romance, nor is anything more closely associated in the mind of the average American with the Gold Rush than the covered wagon.  (accessed on-line 11/5/14 at No. 403 Historic Landmark)

The early American emigrants who braved a new and unknown world set out on a journey which they knew would not be easy.  They had heard the promises of possibilities, and they knew that the road would be beyond difficult.  They left behind family and friends with the understanding that they would likely never see them again. 

Read more about the inspirational pioneers of the West... 

Sacrifice and Thanksgiving ~ Guest Blogging Day

Photo Courtesy of Felixco, Inc/freedigitalphotos.net

On that day Gad went to David and said to him, “Go up and build an altar to the Lord on the threshing floor of Araunah the Jebusite.” So David went up, as the Lord had commanded through Gad. When Araunah looked and saw the king and his officials coming toward him, he went out and bowed down before the king with his face to the ground.

Araunah said, “Why has my lord the king come to his servant?”

“To buy your threshing floor,” David answered, “so I can build an altar to the Lord, that the plague on the people may be stopped.”

Araunah said to David, “Let my lord the king take whatever he wishes and offer it up. Here are oxen for the burnt offering, and here are threshing sledges and ox yokes for the wood. Your Majesty, Araunah gives all this to the king.” Araunah also said to him, “May the Lord your God accept you.”

But the king replied to Araunah, “No, I insist on paying you for it. I will not sacrifice to the Lord my God burnt offerings that cost me nothing.”

So David bought the threshing floor and the oxen and paid fifty shekels of silver for them. David built an altar to the Lord there and sacrificed burnt offerings and fellowship offerings. Then the Lord answered his prayer in behalf of the land, and the plague on Israel was stopped.

2 Samuel 24: 18-25 NIV

As the year 2014 becomes history in the next few weeks, we; my family, could look back and focus on what we have lost this year.  

What have we sacrificed?

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

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...

Devoted to Doing Good ~ Guest Blogging Day

Photo Courtesy of Gualberto 107/freedigitalphotos.net

Do everything you can to help Zenas the lawyer and Apollos on their way and see that they have everything they need. Our people must learn to devote themselves to doing what is good, in order to provide for urgent needs and not live unproductive lives.  Titus 3:13-14

This week we embark on a new adventure.  For 10 years we were seeing the same doctors in Madison, WI.  They had seen us through good times and bad.  They had delivered us both exciting news and devastating news.  They had become trusted, loyal, and steadfast companions in our WAGR Syndrome journey.  

But that chapter comes to a close and we now turn our eyes to the medical professionals in California.  They don't know us.  

Read more at http://www.comfortinthemidstofchaos.com/2014/10/devoted-to-doing-good.html ...

Unwelcome

Deplorable,

Abhorable,

Jealous and Over-zealous is the Fear that knocks on my door.

It's creeping in;

It's seeping in,

As Unwelcome as the Black Widow that skitters across my floor.

Anxious,

All hope is stymied.

Distressed,

All peace unravels.

Unglued,

I pray for mending...

Breathe in, and out;

Breathe in, and out.

Sovereign,

Omnipotent,

Merciful and Just is the Almighty God who watches over us.  

Written in response to Sunday Scribblings 2 writing prompt:  an unwelcome guest

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.

What's a Parent to Do? ~ Guest Blogging Day

Photo Courtesy of ImageryMajestic/freedigitalphotos.net

Remind the people to be subject to rulers and authorities, to be obedient, to be ready to do whatever is good, to slander no one, to be peaceable and considerate, and always to be gentle toward everyone.  Titus 3:1-2 NIV

I've decided that God likes to humble me weekly as a means by which to give me my next "blog" topic.  At least, that's the way it's felt lately.  Just this past week, I can name two distinct times when I did NOT do as Paul had instructed here in Titus 3.

 

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

My Kingdom For An Epi-Pen...~WAGR Wednesday

Emerald Bay on Lake Tahoe

The never ending excitement of having a child with a rare disease...

Most of the time, in spite of all of Evie's numerous diagnoses, we live a tranquil life.  However, on Thursday of last week, we experienced another "bump in the road."  

I got a message on my phone from Jeff saying that Evie had been stung by a bee at school.  He said he was going to take Benedryl over to the school.  I suggested he get the non-drowsy since we'd never really had an issue with bee stings, so a major dose was probably over-kill. 

As it turned out, that was everything EXCEPT for over-kill.  When Jeff was still on his way there, he got a voice mail from school saying that they were going to administer the Epi-pen because Evie was swelling dramatically and turning blotchy red and white. 

Evie has been stung by bees before, and we have never seen an allergic reaction.  This time, however, had the nurse at school not made the decision to administer epinephrine, I shudder to think of what I would be sitting here writing right now.  

It was our first trip to the ER here in Nevada.  Evie was transported by ambulance to the hospital, and I met her and Jeff there.  Evie, in her character said upon my arrival..."I have a question for you...for ALL of you..."  We paused and awaited this important, tear-filled question:  "Can I still give my book talk tomorrow at school?" 

Tough.as.nails, these kids with WAGR are. 

After being released from the ER, we dropped off our Epi-Pen RX at Walmart and headed to get some frozen yogurt while the meds were being filled.  I then drove Jeff and Evie back to school as Jeff's car was there (he had ridden in the ambulance with Evie to the ER.)  

When I returned to Walmart to pick up the RXs, I was told that they couldn't fill the Epi-Pen RX as it was written for a Junior Epi-Pen and Evie needed an adult due to weight.  When I said, "Well, there must be something we can do" the pharmacist told me that they had already called the doctor and he had left for the day and we'd have to wait for him to call back.  

Here's me...

"I just found out that my daughter has a life threatening allergy...I will NOT leave this store until I have an Epi-Pen in my hand."

"What do you expect us to do?" 

"There IS a way to get around this.  I'm certain that the doctors and nurses who observed Evie today would NOT want us to be without an Epi-Pen.  What number did you call?  I will call them and get this cleared up."

The pharmacist, pursed lips, doubtfully furrowed eye brows, turned the computer screen to show me the ER's phone number.  

I called and explained who I was and what I needed.  The receptionist informed me that I could call another number, which she gave me, and ask for an ER doctor to re-write the RX.  I then gave the pharmacist tech the new number and he called and got the re-write taken care of.  About 30 minutes later, I was on my way home with our precious Epi-Pen.

In all the things that we have been through; cancer, heart surgery, recurrent infections...I don't know that we have ever been at the precipice of a life-threatening situation such as this.  Had our WONDERFUL school nurse NOT administered the Epi-Pen...I quail at the thought. 

Did you know that the epinephrine administered through the pen is done so to prevent the HEART FROM STOPPING, and to keep the blood pumping to all parts fo the body.  I didn't realize how disastrous an allergic reaction could be.  Her HEART could have STOPPED.  This wasn't just a throat swelling, or eyes puffing up, or an itchy rash.  This was her HEART!.

So, I have learned many things from this experience, and one of them is to NEVER MAKE LIGHT of an allergy...the other is SCHOOL NURSES are LIFESAVERS...and finally GOD HAD US IN THE RIGHT PLACE AT THE RIGHT TIME.  

What would have happened if Evie had been stung when she was just with our family and we didn't KNOW she had this allergy?  What would have happened if she would have been on a field trip?  What would have happened?  What would have happened?  We were in good hands (in my life, I'd say we were in God's hands), and we are thankful to be enjoying the week we are just one week after such a harrowing experience. 

...and finally, I will not go ANYWHERE without our Epi-Pen...