Sunday, July 27, 2014

Precarious Placement

Image Courtesy of Evgeni Dinev/
I placed you on high,
Precariously swinging,
Please, don't disappoint.

Written in response to Sunday Scribblings 2 writing prompt:  Place

Wednesday, July 23, 2014

When Mommy Gets Schooled in Anxiety ~ WAGR Wednesday

I know, I know, I's late!  It's barely even Wednesday anymore...HOWEVER, I'm still writing a WAGR Wednesday...WHY?  Because I have a GREAT example of WAGR Anxiety!

People with WAGR Syndrome tend to have anxiety issues, along with some nuances of OCD.  Evie has such issues, and it was quite evident these past two days.

Since summers are usually rough for Evie due to the lack of structure, and very little mental stimulation; I have found that "playing school" is a GREAT way to help her stay happy throughout the day as well as a way alleviate the culture shock of returning to school.  

I have to say, we have a pretty sweet "pretend school."  We have laminated schedule/subjects, the days of the week, the weather for the day, and our own set of students.  Our cat, Jinxy, even gets into it.  When he hears us start school, he comes running into the room and has to get right up by the schedule.  We affectionately refer to him as Principal Jinx.  

Yesterday, in the morning when we were starting school, I had this BRILLIANT idea to "simulate" the start of a new school year for Evie in our pretend play.  I said, "Evie...what if we had all new students tomorrow?  As if it's a new school year?  You don't have the same students in your class every year, so we should get new students in our pretend classroom."  

She thought it was a GREAT idea.  

One problem.  

I was not prepared.

So, here is what Evie's anxiety looks like:

"Yes, let's do that!   When can we do that?"  

"Well, honey, let's play regular school today and then we can make new name pockets tonight and have tomorrow be the first day of school."  

"Yes.  Let's write the new names now."

"Um...can we just keep going with school and then we can write them later today?"  

"Oh, but I want to write the new names now."

So, I gave her a notebook and she started writing out the new names of the classmates.  She proceeded to write them over and over again on separate pieces of paper throughout the day (20 names on four pieces of paper).  She wanted to skip going to the pool so we could make the new name pockets.  She had her dress for the first day laid out before bedtime.  She set her alarm so she could get up early today.  She was nervous about going to bed because I hadn't completed all the new name pockets for the students.  She was ready for pretend school earlier than she has EVER been ready for real school. This meant that I was in the shower getting ready for my day before Jeff was, and I don't have a JOB!

Yes, it's adorable.  Yes, it's exciting to know that my kid loves me and loves my silly ideas.  Yes, it's a wonderful feeling to know that playing school is one of her favorite things to do. But, oh my goodness...there are times that I'm afraid to say ANYTHING because I don't know the chain of events that a may result from something that I utter.  

Do I have any solutions?  Not really.  By four o'clock yesterday afternoon, after hours of talking about "the first day of pretend school" I finally had to say, "Honey...I can't talk about school anymore, I'm all talked out."  She handled it pretty well...but I felt guilty having to do it.

Many of our kids (and adults) with WAGR have amazing imaginations, fantastically generous and creative ideas...and a lot of anxiety to go along with it.  

I can't help but wonder what Evie and I will be playing five years from now...

Monday, July 21, 2014

Freedom to Retreat~Guest Blogging Day

Image Courtesy of Michal Marchol/
Come to me, all who labor and are heavy laden, and I will give you rest.  Take my yoke upon you, and learn from me, for I am gentle and lowly in heart and you will find rest for your souls.  For my yoke is easy and my burden is light.  Matthew 11: 29-30

I recall a several years back when a young mother went missing from the small village in which we were living at the time.  The local news was covering it quite closely because she had indicated to her employer that she had noticed someone following her on her way to work; and then she never returned from her break.  Once I learned that she was a single mom of a young child, I thought to myself, "she ran away."  I thought this, not in a judgmental way, rather in an empathetic way.  You see, I once wanted to run away too.  It wasn't too long before the news reporters revealed that the young mother had been located and that she had, indeed, run away on her own.  

I could not judge her, because I had once considered the same.

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

Wisdom of the Weak

Image by winnod/
My mind is racing in the wind,
with music in my ears,
and the rush of drums in my heart.

A whisper barely heard,
but makes me turn no less,
and I wonder what I missed.

I need to be real,
and loved by my Creator,
So the Cricket guides me through.

I am wise when I listen,
strain through the darkness,
stealing visions of my life lived for You.

Written in response to Sunday Scribblings 2 writing prompt:  Wise.

Friday, July 4, 2014


Photo Courtesy of khunaspix/

Just beyond my reach
steaming coffee cup does sit 
upon the table.

Written in response to Sunday Scribblings 2 writing prompt:  Reach

Thursday, July 3, 2014

Freedom to Thrive ~ Guest Blogging Day

No one can serve two masters. Either you will hate the one and love the other, or you will be devoted to the one and despise the other. You cannot serve both God and money.  Matthew 6:24 NIV

Tomorrow, America celebrates her independence.  For some reason, I'm ultra-excited for the Fourth of July this year, and I think it's because of our recent move out west.  We live among the mountains now, and I can't wait to see fireworks with the mountains as their backdrop.  But, I also want to immerse myself in FREEDOM...I feel as though this move from the Midwest to the West has a type of "freedom cry" to it. 

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

Wednesday, July 2, 2014

What Does THAT Mean? ~ WAGR Wednesday

Image Courtesy of Zirconicusso/
Another Gorilla Mom (a mom of a child with WAGR Syndrome) and I were discussing the baffling or confusing terms that doctors may use when describing our children or a diagnosis concerning our children.  It led me to consider writing about my top 5 confusing terms that our healthcare providers may use concerning the health of our children or a particular diagnosis for them.  

1. His/Her vision will be (severely) compromised.
If your child is a non-communicative baby and you hear something like this, you have no clue what to expect.  However, from my experience with Evie, I see how well she functions even with 20/200 vision (legally blind).  She has adapted well to her surroundings and uses her vision, as it is, so I will often forget that she IS legally blind until I see her bump into something, or skip over something she may be trying to read.  
2.  The scan/ultra sound show the kidneys are unremarkable.
Is that good?  Is that bad?  I don't get it.  When we get a clean kidney scan I want to hear, "Everything looked great."  I want to spike the ball in the end zone and do a touchdown dance.  But, unremarkable is good; that means there is nothing to be seen that needs further investigation.  I will often just follow up with the doctor and say, "That's good?  Everything is clear?" just to calm my anxiety.  
3.  90th percentile.
Woo-hoo!  With my academic background, 90% was always AWESOME!  Not so much with the blood pressures or the BMI (Body Mass Indicator), though.  
Because of the increased risk of kidney failure in persons with WAGR/11p Deletion, we need to keep blood pressure and weight LOWER than might often be "acceptable."  Evie was once in the 99th percentile for BMI, and her BP was also in the 90th percentile.  
With the BMI, bumping over 99th percentile would have significantly increased her risk for developing diabetes; we had to take action to help her lose weight.  And, concerning the elevated blood pressure,  we needed to reduce the strain on the kidneys, so, according to our doctor at the NIH, we wanted to get her blood pressure to within the 50th percentile. 

4.  Kidney function is adequate/sufficient.  
Pardon me?  That does NOT sound good.  However, because Evie had part of her kidney removed, she would have less than 100% function anyway.  A person who has only one kidney will be at 50% kidney function, so it doesn't necessarily mean that kidney isn't working.   20% kidney function will start affecting the persons health, and 10-15% kidney function requires dialysis or transplant.  (WebMD)

5.  Elevated white blood cell counts.
I knew that when Evie was on chemo for Wilms Tumor, her white blood cell counts could drop and that would put her at risk for contracting illnesses because it would mean her immune system was suppressed.   However, the first time we went in to the clinic because of a fever while she was on chemo, they reported that her white blood cell count was elevated.  I was RELIEVED because I thought it meant that she still had a high immunity despite her chemo treatment.  I was wrong.  The elevated white blood cell count indicated that her body was FIGHTING an infection.  It turned out that, at that time, Evie had pneumonia, so her white blood cells were rallying and trying to fight it off. 

These are just five of the common (or most memorable for me) "ambiguous" terms that can affect a person with WAGR.  I'm sure there have been other terms that have confused me, but these just stand out as the ones that really caught me off guard.  

What ambiguous or confusing terms have you come across in your medical journey?


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