Precarious Placement

Image Courtesy of Evgeni Dinev/freedigitalphotos.net

I placed you on high,

Precariously swinging,

Please, don't disappoint.

Written in response to Sunday Scribblings 2 writing prompt:  Place

When Mommy Gets Schooled in Anxiety ~ WAGR Wednesday

I know, I know, I know...it'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...

Freedom to Retreat~Guest Blogging Day

Image Courtesy of Michal Marchol/freedigitalphotos.net

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/freedigitalphotos.net

Wise.
My mind is racing in the wind,
with music in my ears,
and the rush of drums in my heart.

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

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

Wise.
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.

Stretch

Photo Courtesy of khunaspix/freedigitalphotos.net

Just beyond my reach, 

steaming coffee cup does sit 

upon the table.

Written in response to Sunday Scribblings 2 writing prompt:  Reach

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...

What Does THAT Mean? ~ WAGR Wednesday

Image Courtesy of Zirconicusso/freedigitalphotos.net

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?

Plum

We have a plum little house,
In our plum little town,
With a plum perfect view 
of the mountains all around.

People thought us plum crazy
But we thought it was best,
To face all our fears
for a plum life out west.

While I'm feeling plum tuckered,
Unpacking's made me plum numb;
There's no rest for the weary who follow
dreams so plum.

Written in response to Sunday Scribblings 2's writing prompt:  Plum

A Lil' Dab'll Do Ya~Guest Blogging Day

Image Courtesy of Stuart Miles/freedigitalphotos.net

"You are the salt of the earth. But if the salt loses its saltiness, how can it be made salty again? It is no longer good for anything, except to be thrown out and trampled underfoot. "  Matthew 5:13 NIV

My grandpa Ed died when I was 8 years old.  That means I have a fairly limited amount of memories about him.  However, there's one thing that has ALWAYS stuck with me:  

A Lil' Dab'll Do Ya.

I remember Grandpa saying that when we would be painting with water.  You know the books that you could buy at a Ben Franklin?  They looked like coloring books, but the pictures were drawn with colored lines and when you'd apply the tap water with a brush, the colored lines would run and become "paint." 

 

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

The Most Perfect Pastry

You, my child, are a pastry;

A delicacy to behold.

Your sweet confection's a blessing;

Even now, when you're ten years old.

I could pair you with morning coffee;

But your glaze would dissolve; bittersweet.

I could sip some tea from a tea cup;

You'd grow stale as I watch it steep.

You are filled with a joyful spirit;

Lemon, Raspberry, Cream Cheese and more.

Appearing outside, as all of the others;

But inside, unique to the core.

I thank God for His infinite blessings;

He formed you with His own baker's hands.

Made you with the richest ingredients;

Now before me His fine creation stands.

You, my child, are a pastry;

The sweetest course God has made in my life.

Enjoy every day that He gives you;

Because you are the Creator's delight.

Written in response to Sunday Scribblings 2 writing prompt "Pastry "...

 

The Day My Dad Entered Eternity~Guest Blogging Day

He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end.  Ecclesiastes 3:11

Two years ago today, I answered the phone and heard my mom's broken voice tell me that my dad had died.  It seemed unreal.  I had just seen him days before.  He was still so young.  I thought there was so much yet for him to see and do...

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

How A Gentle Tug On My Foot Gave Me Courage~Guest Blogging Day

Joel and Evie

Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you. Deuteronomy 31:6

“We will take him home and we will love him.”

Those were the words that my grandma told me my grandpa said to her when my uncle was born with Down Syndrome.  That was nearly 50 years ago when taking home your baby with Down Syndrome was not as “usual” as it is today.

And love him they did…and still do.  We all do.

But why did my grandparents do that?  Why did they decide to break with status quo and take home a baby born with a genetic syndrome that would bring with it many, many serious complications like open heart surgeries and developmental delays?

Two reasons…Love and courage.

Continue Reading on Comfort in the Midst of Chaos

Hold On and Scream Like a Girl~WAGR Wednesday

Look both ways before you cross the street.
Don't talk to strangers.
Don't call someone on mommy's cell phone without asking.
I before E, except after C.

Rules.  Rules make life so much easier for us, don't they?  Black and white, left and right, dark and light.  Rules help us know what to do, and when to do it.

But what about when rules don't help?

That's today's topic for WAGR Wednesday.  Rules, routines, and rituals can add predictability and simplicity to our lives, but when you know someone with WAGR, you find out that rules can complicate things as well.

Evie's IQ, for example has tested at around 62...which falls into the delayed range.  However, it's quite difficult to diagnose her as delayed because she is able to memorize things so well...patterns, systems, routines.  It's when those rules and patterns need interpretation that you actually see the delay.  The gray areas are the areas that scare me the most because they reveal the naivety, the vulnerability of my child.

Look both ways before you cross the street.  Left, right...cross.  EXCEPT for when there's a car!  It's not the looking left and right that safeguards you...you have to EVALUATE the situation and realize that, if there is a car coming, you cannot cross.  That's the part where Evie falls short.  That's the part that makes 'the rule' so complicated for Evie.

Don't talk to strangers.  But what if she needs help?  What if she gets lost and needs to talk to an adult about where she is and how she can get to the place she needs to go? 

Don't call someone on Mommy's phone without getting permission first.  But what if I'm having a medical emergency?  What if I can't respond? 

I before E, except after C.  And except in the word WEIRD.  And not in eight, nor weigh, nor reign, nor foreign...oops...either, neither, neighbor.  Okay, never mind the rule...

One glaring area that stands out to me where the 'rule' that Evie has learned impacts her relationships with others is a 'rule' she was taught concerning interacting with people.  "Hi, what's your name?"  She'll ask "what's your name" even when she clearly knows who the person is.  Then, the person gets sad because he or she thinks Evie doesn't remember or can't see him or her clearly enough to identify. 

Another issue with rules, or routines, is that they may add comfort to our daily lives, but when they are BROKEN, the DISCOMFORT that results is EXTREMELY exacerbated.  A good example of this is a TV guide which shows the times and channels of different television programs.  Evie will memorize a schedule, but when she sees that the schedule is disrupted or different than normal, she will grow extremely anxious-even when it's not a program she watches.

"Oh no, but Bubble Guppies is on at seven, it's supposed to be Dora! I miss Dora. Where is Dora?"

"Well, first of all, you don't watch TV at home because we don't have cable. Secondly, you haven't watched Dora in five months."

"But Dora's supposed to be on at seven...." ...and, here we go.

With all of this in mind, you can imagine that our big move from Wisconsin to Nevada; which actually happens in just three days now, is going to produce a lot of anxiety...many, many rules and routines will be changing.  What we will do for Evie is what everyone needs to have done for them; we will create new rules, new routines, and be understanding and patient as these take hold and ease us into a new way of life.  For over two months, for example, Jeff was living in Nevada and Evie and I were here alone.  Each night, after we had gotten home, I would lock the door and say, "We're in for the night."  Evie loved that, and so did I.  It gave us comfort, security, and peace in our camaraderie and togetherness. 

Life isn't easy.  As much as we'd like to think there are systems and rules to be followed, there are a lot of gray areas which require interpretation and adjustment.  Having a child with WAGR creates a few more twists and turns to these systems, but the longer you're on this "ride,"  the easier it becomes to anticipate some of the bumps you might hit along the way. 

Don't miss out on the thrill of the ride just because there are bumps~just follow the rule that Evie has established for all the wild rides she takes:

Hold on and scream like a girl...