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...

Celebrating Our Lives with WAGR Weekend~WAGR Wednesday

 Why is WAGR Weekend so important to me?
  
That seems like an easy question to answer; but that's only if I were to give an easy answer.  I don't have an easy answer, however.  In fact, my answer may seem a bit "controversial." 

First, I should probably explain WHAT exactly WAGR Weekend IS!

Being that WAGR is a rarer than rare disease, we know that the only "easy" way to meet other families with WAGR is to arrange to gather at a given time at a given place.  Hence, WAGR Weekend was created.

Friday night there is a chance for the families to meet up together; not for a formal dinner, but maybe just a meet-and-greet type of event in the lobby of the hotel, or in a small banquet room.  

Typically the "Gorilla Moms" will have their night out on Friday while the "Gorilla Dads" and other members of the families may play together or just hang in their hotel rooms.  

Saturday usually is ushered in by a casual breakfast, or maybe just an arrangement to meet for the continental breakfast that the hotel may be serving. There may be presentations, or round table discussions on Saturday before lunch, and some sort of activity after lunch during which attendees can hang out together and have fun.  Saturday night is "Gorilla Dad's" night out; an opportunity for the dads to bond just as the moms did the night before.  

On Sunday people head back home at all different times.  Some may stay on for a longer vacation, while others have to hurry home to get back to work on Monday morning.  

So, nothing "flashy" really happens.  Not if you're on the outside looking in.  But, after pondering the importance of WAGR Weekend to me; I've realized that something AMAZING happens, if you're ready to let it.

Elisabeth Kübler Ross is known as the author of the 5 stages of grief.  For anyone who knows about grief and anyone who knows about having a child diagnosed with a rare disease, GRIEF is, in fact, what many of us experience.  

Denial:  I kept waiting for the doctors to return to our hospital room and say, "Oh my gosh, there ARE irises in her eyes...we just didn't see them at first."  Then after we got the results of the FISH analysis back from Baylor University in Texas which confirmed Evie had WAGR, I thought MAYBE we would get a letter saying, "So sorry, we actually sent that letter to the wrong person."

Yes, we DO experience denial when it comes to having a child diagnosed with WAGR.

Anger:  I was TICKED OFF that I didn't get a "happy homecoming".  I had LOTS of friends who had babies and they all got to come home with their happy, healthy baby and just learn how to be a mom!  I NEVER experienced that.  I knew my daughter would be blind and that she would likely have cancer and suffer a range of developmental delays.  I knew that from the third day of her life.  Where was MY happy homecoming?  I didn't even know if my baby would live.

Yes, we DO experience anger when our children are diagnosed with WAGR.

Bargaining:  I can't remember exactly going through this at the time of Evie's birth- I knew that it "was what it was" and that nothing I said or did would make it go away.  I DO remember, however, when she was diagnosed with Wilms Tumor at 15 months old, I kept praying to God and saying, "If I glorify you through this all, if I look to you and say, 'God is good...' will you please let this go easily for us?  Maybe even make it disappear all together?" 

Yes, we DO bargain and try to do things in hopes that our road will be easier.

Depression:  Oh yeah...you could say that I'm medicated and motivated.  People would say I inspired them, that I was so strong, that I was amazing but I would see a messed up, tired, selfish witch in the mirror.  I had postpartum depression that I didn't recognize until I was through it...I still get nauseous when I hear the sound of the kick and play or baby swing that Evie had as a baby.   Those were long days of "just getting by until bedtime."  I wanted to be asleep, I wanted to be alone, I wanted to run away.  Thankfully, I had great family, great friends, and great doctors to help me through.

Yes, we DO experience depression when our children are diagnosed with WAGR as well as any of the other medical conditions that come up as a result of WAGR. 

Acceptance:  There it is...that moment, or many moments, when I have come to terms with that fact that "This is My Life...This is My Story..." and now I just have to choose how I'm going to live it.  I can spend my day depressed, or I can spend my day inspired.  I can look at this as a burden, or I can look at it as a privilege given to only a few.  WAGR Weekend is part of ACCEPTANCE for me.  

Yes, it can be over-whelming to see the range of abilities in our kids. Yes, I did get a little worried about Evie's future as I heard stories about renal failure, melt-downs, speech delays, and all the "other stuff". But then I realized that it none of it changes the love that we have for our kids. None of the "other stuff" is the end of the world. None of the "other stuff" has prevented our kids from doing awesome things that are quintessentially them!

   

Nick's got the microphone.
Danica's heading for the elevator again.
Kadina's dancing to Miranda Lambert. 
Caroline wanted some quiet time, so she went upstairs to her hotel room.
Hayd's got the camera and he's "cording" Evie bowling.
Evie's squeezing her hands opened and closed, opened and closed, opened and closed...she must be happy.

WAGR Weekend takes me beyond acceptance to a place in my heart of celebration and gratitude. 

I'm so thankful I know these people. I'm so thankful I can laugh with them, cry with them, share with them, and thrive with them.

  

Well, shoot...now I wish it were the end of July so WAGR Weekend would be THIS weekend!  Can't wait to see everyone in Cleveland!

Descendants of a King with a Few Skeletons in Our Closet~Guest Blogging Day

Photo Courtesy of Smokedalmon/freedigitalphotos.net

So God created mankind in his own image, in the image of God he created them; male and female he created them. Genesis 1:27

We are all descendants of the same Creator. It's not all that hard to believe because we see the similarities from one person to the other. We all have the same basic needs: food, shelter, and water-security and belonging. But when you talk about one specific person who is in that same "lineage," it becomes a little harder to believe.

Jesus.

The King of Kings, The Rock, The Messiah, The Good Shepherd.

Really? How can I be a descendant of Christ? I'm a tiny little woman full of fear, who succumbs to laziness, can't keep a dollar in her pocket without the urge to spend it, and would gladly stand in the kitchen eating peanut butter by the spoonful all day long if given the chance.

How can I even THINK to boast being a descendant of a King? 

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

Under the Awning

Image Courtesy of foto76/freedigitalphoto.net

Under the awning,

I'm safe from the sun,

But smothered by plastic,

With no where to run.

The air is not moving,

And spiders swing low,

From webs spun like cotton;

I don't even know.

Under the awning,

The rain cannot fall,

Rain rivers find pathways,

But no joy at all.

Under the awning,

Securely I stand,

But there is no adventure,

And the life lived is bland.

Written in response to Sunday Scribblings 2 writing prompt; Under the Awning...