My 50 Shades of Infidelity ~ Guest Blogging Day

Photo "Bottle of Wine with Two Glasses" Courtesy of Marin/freedigitalphotos.net

Finally, brothers and sisters, 

whatever is true, whatever is noble, 

whatever is right, whatever is pure, 

whatever is lovely, whatever is admirable—

if anything is excellent or praiseworthy—

think about such things.  

Philippians 4:8 NIV

YES!  

It's time to pick up my daughter from school.  I grab my iPad Mini off the counter top and skip out the door.  I can hardly wait to get to the front door of the school so I can stand in my regular "waiting for the bell to ring" spot and open up my digital copy of "the book."   You know, the one EVERYONE was talking about?

Holy cow, look at the time!  1:30 AM...when was the last time I saw 1:30 AM?  And to think it's because I'm reading a book...

Oh.my.goodness...I'm exhausted.  I stayed up WAY too late reading.  Now I can hardly keep my eyes open...well...except to jump back into the story starring Ana and Christian.  

Technically, I think it's called a "50 Shades" hang-over.

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

Danger in the Periphery ~ Guest Blogging Day

Image "Suspension Bridge to Mangrove Tropical Forest" Courtesy of Keerati/freedigitalphotos.net

Peter, suddenly bold, said, “Master, if it’s really you, call me to come to you on the water.”

He said, “Come ahead.”

Jumping out of the boat, Peter walked on the water to Jesus. But when he looked down at the waves churning beneath his feet, he lost his nerve and started to sink. He cried, “Master, save me!”

Jesus didn’t hesitate. He reached down and grabbed his hand. Then he said, “Faint-heart, what got into you?”  MSG Matthew 14:28-31

I have a faint heart as well.  There are many times that I have found myself saying, "Oh yeah, Jesus, I have a big faith, call me out there and I'll walk to you." 

But the minute I look down or to the side; or, God-forbid it, BEHIND ME...Look out, I will sink like a brick.

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

Let the Word be Recieved ~ Guest Blogging Day

Photo "Heart of Book" Courtesy of anat_tikker/freedigitalphotos.net

And we also thank God continually because, when you received the word of God, which you heard from us, 

you accepted it not as a human word, but as it actually is, the word of God, 

which is indeed at work in you who believe.  

1 Thessalonians 2:13 NIV

As I sat in church last Sunday and listened to a message on what a transformed Christ follower looks like, my mind jumped to an image quite foreign to me.  I saw in my mind, as I pondered this particular portion of scripture, a mother reading the Bible to her child who laid in a nursing home bed, immobile, and unresponsive.

Now, I, personally, do not have a child who is unable to converse with me.  I do not have a child who is confined to a bed.  I have a child who talks (a bit too much, on some days) and who responds, and who can communicate with me on a variety of subjects.  So, I really am not a likely candidate to be writing about this topic.

But, the Holy Spirit gave me this image regarding this verse.

Why?

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

When the Clouds Descend ~ Guest Blogging Day

God proves to be good to the man who passionately waits,
    to the woman who diligently seeks.
It’s a good thing to quietly hope,
    quietly hope for help from God.
It’s a good thing when you’re young    to stick it out through the hard times. 

 Lamentations 3:25-27 MSG

This is our first winter in Nevada.  I love it.  Not only is it much milder than Wisconsin, but the mountains keep me in awe every day.

Just last weekend, we had the first "big" snowfall since we moved.  I think we had about 4 inches on the ground around our house...not the 18-24 inches we were used to seeing in a big storm in Wisconsin.  I could.not.WAIT to get outside the next day and look around at the snow-covered mountains.

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

The Waiting ~ WAGR Wednesday

Handsraised for #rdd2015 #rarediseaseday on Lake Tahoe

There is a lot of "waiting" that comes along with having a rare disease.  First, my husband and I waited at the hospital for the doctors to figure out where to refer us when my daughter was three days old.  They drew blood and sent it off to Texas for a special FISH analysis and we waited for weeks for the confirmation that she had WAGR Syndrome.

We waited in the ERs and Urgent Cares for doctors to come in and ask the same ridiculous questions which had nothing to do with our visit. 

• Was she full term?
• Any complications during pregnancy?
• Was it a  normal delivery?

This was not necessary questioning when we knew it was pneumonia or a UTI, but, as the "3 Ring Circus" that drew observers from all over the hospital, apparently we needed to be patient and wait for them to satisfy their curiosity.

We waited while our daughter would be under sedation for eye exams and ultra sounds; we waited through eye surgeries, chemotherapy appointments, surgeries, and recoveries.  We wait for blood tests to figure out how her hormone levels are, and how her kidneys are functioning.

Waiting for medicaid approval and acceptance into the county programs was and is hard, because financial concerns heaped on emotional duress only multiplies exponentially one's fear of the future. 

Life with a rare disease can be lonely as we wait.  Waiting for the next diagnosis, the next medication, the next referral to a the next specialist.  We wait for researchers to show interest, for pharma to release the "affordable" generic, for the FDA to "approve" it for children.

We wait, and wait, and wait some more.

On Saturday, February 28, 2015, if you would, please take a photo of you with your hands raised as a sign of solidarity with those living with one of the 7,000 rare diseases~let us know that we don't wait alone.  Post your photo to Facebook, Twitter or even on the official Rare Disease Day website with the hashtag #rdd2015 and #rarediseaseday to join hands around the world and make our rarest voices heard.

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.

What Did I Do to Deserve This? ~ Guest Blogging Day

Photo "Tomb" courtesy of  Tiverylucky/freedigitalphotos.net

 Near the cross of Jesus stood his mother... John 19:25 NIV

It's amazing to study the life of Jesus and to see how he fulfills the Law and becomes our High Priest who has walked the earth and knows what we go through while living here.  But, lately, I've had to come to terms with another piece that God, in all His wisdom, included in the Gospel.

The fact that Jesus's mother watched him die.

Being parents of children with special needs, many times, we have to face the fact that we could out live our children.  Yes, all parents have to face this; but as parents of children born with certain genetic conditions or medical conditions; we have to live with the fact that our children are more medically fragile. 

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

Not Even Nakedness... Guest Blogging Day

 

Image "Two Affectionate Babies" Courtesy of Victor Habbick/freedigitalphotos.net

Who shall separate us from the love of Christ?  

Shall trouble or hardship or persecution or famine or nakedness or danger or sword?  

Romans 8:35 NIV

The last time MOST of us want to see a picture of ourselves naked is when we're around the age of those two babies above.  There are many of us who don't even like wearing a swimming suit in public, and who can't stand going to the doctor to be poked and prodded while wearing a thin cotton (or paper) gown.  I personally find that some of my most terrifying nightmares are the ones where SOMEHOW I wind up naked.  (Don't leave me hanging...please, tell me I'm not alone.)

So, one of the things I fear most for my daughter is her loss of modesty or dignity.  She has honestly had to be naked in front of her doctors for a decade.  We have a hard time teaching her that there are now times when it is NOT OKAY to just whip your shirt up, or walk out of the bathroom with your pants down to your ankles.  As adorable as she may be, she will be a young lady very, very soon, and her naivete about nudity terrifies me.

Our daughter rarely has slept over at a friend's house; part of that is HER anxiety, and, admittedly, part of that is MINE.  She has rarely dressed herself successfully .  She has trouble with hygiene in the bathroom.  When she has dressed herself, usually something is backwards or inside out.  How do I send her to someone else's house and hope for her to maintain her dignity?

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

I Would Need the Nails...

"World in Fire Image" Courtesy of Danilo Rizzuti/freedigitalphotos.net

"...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." 

Hebrews 12:2 NIV

I'm having one of those days...one of those stretches of days.  The days that many people believe I don't have because of how happy I usually am.  But I most certainly do have those days.  I have the days that I want to flee from my responsibilities as a mom of a child with special needs; the days when I know that I am NOT strong enough for this job and that God has made an undeniable mistake in giving me this responsibility. 

If I waiver and grow weak from a battle for supplemental insurance...If I am too tired to even want to log in to ANOTHER "my chart" account to try and track down MORE appointment notes for my daughter's medical history...If I can't think of something I want to do LESS than send another e-mail to the state...If the smell of my computer when it roars to life makes me nauseous...If I cried for 3 hours today and only stopped to take my daughter to an appointment...

If all of this is the REAL me...

Then I am not strong enough.

Polycarp, a bold and brave Christian martyr, who refused to proclaim, "Caesar is Lord" was set to be burned at the stake.  The fact that he stood firm in his faith is one thing. 

Instead he proclaimed:

"Eighty-six years I have served Christ, and He never did me any wrong. How can I blaspheme my King who saved me?" 

But wait, here's the real kicker: 

Soldiers then grabbed him to nail him to a stake, but Polycarp stopped them: "Leave me as I am. For he who grants me to endure the fire will enable me also to remain on the pyre unmoved, without the security you desire from nails." He prayed aloud, the fire was lit, and his flesh was consumed. The chronicler of this martyrdom said it was "not as burning flesh but as bread baking or as gold and silver refined in a furnace."

No nails...

He knew that God would give him the strength to stand there as his flesh burned, as the smoke sucked the air from his lungs, as the flames consumed his living body.  He requested that they leave him there to freely and willing be sacrificed for the cause of Christ. 

I don't know about you, but I think I would have needed those nails. 

I'm not strong enough.

Polycarp stood in the fire as his flesh burned; he stood there by the power of his God, by the power of his faith.  Do I have that kind of faith?  

I don't have the answers to these questions.  And the funny thing is...I actually started writing this LAST Monday!  I didn't even have the strength to finish!  But here I am, a week later, still in love with the God who loves me; the God who loves you.  I've had a week of laughter, a week of tears, a week of joy, a week of fear...Because we were born into a dying world, and we are all on a journey toward the ultimate choice; the choice to accept the love of our Creator, or the choice to turn away.  And, although God is both the "hurt and the healer," I trust Him. 

God hasn't asked me today to burn on the stake for Him...but He HAS asked me to trust Him in the midst of some pretty trying times.  

I can do this, God...with your strength, I can do this...

The Importance of Being Fit ~ Guest Blogging Day

"Pilates Training" Courtesy of Marin/freedigitalphotos.net

Open my eyes, that I may behold wondrous things out of your law. 

Psalm 119:18 ESV

I could begin with a laundry list of the current fad diets.  I could begin with a diatribe of fitness regimens certain to contour and shape your body in under ninety days.  Or, I could just begin with a simple thought that I had the other day when some friends and I were discussing our difficulties with carving out time to dig into God's Word.

What's our damage?  (A.K.A. What's our problem.)

I manage to carve out time nearly EVERY day to do my workout.  Some days it's twenty minutes, and others it's forty.  I manage to do my volunteer work for the International WAGR Syndrome Association.  I even manage to carve out twenty-five minutes a night to watch How I Met Your Mother with my husband.  (I had never watched the show when it was on television, but now that it's on Netflix, I can watch it on MY time.)

So, why WOULDN'T I be able to carve out time for God?

Wait, let me re-phrase that...

Why DON'T I?

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

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.

Her World, My Mystery

What is it like to live there?
Lying down and staring up,
Watching Full House or singing with K-Love, 
Rocking back and forth, 
Creating a rat's nest to brush out later with tears.

What is it like to live there?
Knowing enough, but not knowing enough,

Knowing you're different, not just unique; 
But very, very different from your friends.
Knowing that your health has never been good, 
And that this will never change.

What is it like to live there?
Trapped behind eyes that don't hide the light,
In a mind that struggles to find her senses;
The senses to make sense of it all,
In a body that struggles to run, jump, and play,
With a mouth that can't say for sure how you feel.

I want to know what it's like to live there, 
In your own world, in your own struggles, in your own thoughts.  
It is a mystery to me...a painful mystery I try to solve,
Taking one clue at a time, as they come, 
And piecing them together to be a better mother for you every day.

Written in response to Sunday Scribblings 2 Prompt:  lost in her own thoughts