"Me-OW," said God ~ Guest Blogging Day

Keep deception and lies far from me,
Give me neither poverty nor riches;
Feed me with the food that is my portion,
That I not be full and deny You and say, “Who is the Lord?”
Or that I not be in want and steal,
And profane the name of my God.

Proverbs 30:8-9 NASB 
 

They look so peaceful when they're sleeping, don't they?

But, my little buddy, pictured above nestled in with his football, no longer wants to sleep at night!  No, Jinxy Kitty; now 13 years old, has decided that he needs to eat at 3 am, if not earlier.  What that means for me is:

• Beginning at sometime between 1 AM and 3 AM, every morning since January, I begin to feel his "gentle" nibbling on my eyebrows, biting on my head, or pawing at my nose.  
• He has also began to pull at our window blinds, so those usually are opened at bedtime in order to ensure they are out of his reach.
• After being fed, he promptly retreats back to the master bedroom; while I, now awake, read for about an hour in the recliner until I nod off again for an hour until my alarm sounds.

I'm tired...I don't go to bed very early, so I'm only getting about two hours of uninterrupted sleep each night.

But while others say, "Put him in another room," I cannot; because I KNOW with every ounce of my being that God is teaching me something through this.

He's reminding me that I can do NOTHING apart from Him. 

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

That's What He Said ~ Guest Blogging Day

For as the rain and the snow come down from heaven,
And do not return there without watering the earth
And making it bear and sprout,
And furnishing seed to the sower and bread to the eater;

So will My word be which goes forth from My mouth;
It will not return to Me empty,
Without accomplishing what I desire,And without succeeding in the matter for which I sent it.  Isaiah 55:10-11 NASB

My cat has been waking me up somewhere between 1:00 AM and 4:00 AM in the morning since January.  Since I don't get to bed until 10 or 11 at night, that leaves me only a "couple"of hours of uninterrupted sleep for a few months now.  

But, that's a story for next week.

I just needed you to be aware of my state of sleep deprivation so the following story makes more sense.  Today, I want to tell you about the surprise blessing I received this past week by committing to scripture memorization.  

I have stayed on the mailing list for our women's ministry back in WI even though we now live in NV, and a few months ago I saw a message to the women that there would be a scripture memorization challenge for the summer. I thought that would be something fun for me to do while I was off of work and home with Evie over summer break.  

I didn't realize I was supposed to start BEFORE summer, and I was dragging my feet at starting in on the memorizing.  I really had only planned on it when "I had nothing better to do."  

Something urged me to start this past week, however, and I'm glad.  

When I pulled out the program information, I found that we were to start by memorizing Psalm 1.

AN ENTIRE PSALM?  

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

Getting Plugged in to my Power Source ~ Guest Blogging Day

Evie and I praising at Joyful Noise Family Fest a few years Back...

 

Hear my cry for mercy as I call to you for help, 

as I lift up my hands 

toward your Most Holy Place.  

Psalm 28:2 NIV

What is with the people raising their hands?

I remember asking myself this question over and over again when I would attend church with my grandma and grandpa as a young child.  

As an adult, I not only lift my hands when worshiping in church, but I do when we are at Christian music concerts, and I do even when I'm cruising in the car and the Spirit moves me.  

I realized the other night, while worshiping at the Beautiful Offerings Tour with artists like Big Daddy Weave, Jason Gray, Citizen Way and Lauren Dagle, that my hands lifted in praise are EXACTLY the PROOF of "HOW I STAY SO POSITIVE?"

People say I inspire them, and they want to know how I find the energy to do the things I do...Just as a tall tree would work as a conductor of energy from a lightening bolt to the earth, my hand raised in praise of Jesus is my power source.  It IS how I continue to persevere in a world that is so broken.

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

Blessed Enough to be Speechless ~ Guest Blogging Day

Image "Mother Giving Hand to Child" Courtesy of David Castillo Dominici/freedigitalphotos.net

While he was saying this to me, 

I bowed with my face toward the ground and was speechless.  Daniel 10:15  NIV

A few weeks ago we were at an ophthalmologist's office.  My daughter was meeting this specialist for the first time as she has several eye conditions which include, but are not limited to; aniridia (no irises in the eyes), and glaucoma (high pressure within the eyes).

If you've never seen how doctors measure the eye pressures in children and infants, they typically use an item called a tonopen.  This pen must be placed directly on the eye ball, right where the iris and pupil are located.  The pen takes several readings which reflect how high the pressure in the eye is. 

Because my daughter doesn't have irises, she is photosensitive; meaning, she has extreme sensitivity to light.  She wears sunglasses at all times when she is outside, even if the sun is low on the horizon or behind clouds. 

Keep in mind that my family just moved from the Midwest to the far West under a year ago.  We have become acquainted with all of our new doctors, but don't know them NEARLY as well as we did our doctors in Wisconsin.  Often, I just assume that the doctor knows what he or she is doing; but that's not the best thing when it comes to rare diseases.

For example, when the doctor was trying to check my daughter's eye pressures with the tonopen, she made her tip her head back and stare straight up into an overhead fluorescent light.  It didn't dawn on me to tell the doctor to turn the light off, nor to ask her to dim the light.  My daughter kept closing her eyes while the doctor had the tonopen set on the eye ball attempting to get a reading.  

I watched, silently, as they both struggled to do their jobs:  my daughter was struggling to protect her eye from the blinding light and the doctor was struggling to get a reading as quickly and accurately as possible.

It was excruciating to watch.  

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

What Smells in Here? ~ Guest Blogging Day

Image "Potpourri used for Aromatherapy" Courtesy of Serge Bertasius/freedigitalphotos.net

 ...and walk in love, just as Christ also loved you and gave Himself up for us, 

an offering and a sacrifice to God as a fragrant aroma.  

Ephesians 5:2 NASB

I've been reading a lot lately about essential oils and their healing properties.  Having suffered from migraines and anxiety myself, in addition to having a daughter with special needs; anxiety, high blood pressure, kidney problems, and sensory issues~I've been attracted to "homeopathic" or more "natural" remedies for some of our health issues.

What's interesting to me is that, just as "too much of a good thing is still too much" with aromatherapy, so it is with our witnessing to others about Christianity.  In the passage above, the Ephesians are instructed to walk in love and be a fragrant aroma of Christ's love and sacrifice. Fragrant is most often defined as "sweet-smelling".  That conjures up images of a SOFT smell, or a LIGHT scent.

With essential oil aromatherapy, one comes to learn that while lavender might be beneficial to those who suffer from migraines, TOO MUCH lavender can also TRIGGER migraines.  

We must be cautious about HOW MUCH is TOO MUCH for certain people...

But how do we know?  How do we know that we aren't going to overdose on evangelism?  How do we know when to stop so we don't push a friend, family member or acquaintance AWAY from us and God rather than toward God.

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

Homesick...

We've almost been living out West for a year now already.  Wow...that REALLY went fast. 

In that time, I have been homesick twice...not too shabby, if you ask me. 

The first time it happened was back in January, and the second was today. 


Now, I'm not writing about it to make anyone feel bad.  I'm writing about it because I have thought about WHY I'm feeling the way that am, and I'm writing about it so that others who may TOTALLY get what I'm talking about can know that they were not, are not, and will never be alone.

Here's the thing about moving 1800 miles away from home.  NO ONE KNOWS YOU. 

• No one says, "That's sooooo 'Tammie.'" 
• No one says, "This is a job for Tammie."
• No one says, "If only Tammie were here right now." 
• No one says, "We need someone to paint the sign!  Quick, call Tammie."

Here's the other thing about moving 1800 miles away from home.  NO ONE KNOWS WHO YOU ARE ASIDE FROM BEING YOUR CHILD'S MOTHER.

No one here would call me spontaneous, fun-loving, willing to help, or adventurous-even though I am.  

• Here, they ONLY know that Tammie can't stay too long because Evie isn't comfortable here.  
• Here, they only know that Tammie needs things planned ahead of time so she can prepare Evie so Evie doesn't have a meltdown.  
• Here, they only know that Tammie talks about WAGR Syndrome aaaaaaaaallll the time; but really, that's because everyone in our old hometown has been learning about WAGR for 10 years along side of us; so they don't really have anymore questions to ask in Mount Horeb, WI.  (If you have a child with WAGR and are moving to WI, high-tail it to Mount Horeb...they will have no questions left!)  :):):)  I don't MIND answering the questions...but sometimes you DO feel like it's all you talk about, AND you want people to know that it's NOT the only thing you CAN talk about.

People here don't know what my dream job would be if money and reality were no object.  Easy! Singing and dancing in a musical.  I'd be shuffling off to Buffalo and time-stepping while singing "Meet Me in St. Louis" in a heart beat.

People here don't know that I used to re-write songs using the features and benefits of our new Victoria's Secret bras to train our employees when a new bra was launched.  I'll sing Body By Victoria to "Staying Alive" by the BeeGees for you anytime!   How about English Lace to "Wanna Be" by the Spice Girls?

People here don't know that in my spare time I like to draw and paint.  Do I ever do it?  No, because I have no spare time.

• If you needed an answer to an 80s or 90s trivia question, who is your phone-a-friend?  Tammie.
• If you wanted to take a pole-dancing class, but you didn't want to take it alone, who would you call?  Tammie.
• If you had the urge for Grumpy Troll, you called Tammie.
• If you needed to go shoe shopping, you called Tammie.

I have homesickness figured out.  It's all mathematical.  

When you have lived in the same town for 13 years, you have gotten together with friends for dinner, drinks, movies, Bible studies...etc, a LOT of times.  You can easily miss a dinner or a Bible study and really not feel like you've missed anything.  Afterall, you have been present and accounted for twelve of the last times you've all gotten together.  No.Big.Deal.

But right now, I don't have the NUMBER of times on my side.  AND, I don't have the ability to be present and accounted for as often because we don't have THAT many people to fall back on for childcare.  So, when I can only really BE THERE one out of four times, suddenly I find that I'm JUST getting caught up, and then I miss something, and I'm behind again. 

It's like trying to bring up your GPA when you're failing a class.  Maintaining a higher GPA is easier than raising up from the bottom of the grading scale.  I'm working at it, but it.is.tough.

So, that's my theory.  I haven't been homesick that many times considering how long we've been out here and how far away we are.  But, when it hits, it hits hard.  Realizing that it's a matter of mathematics has actually helped because that means I CAN survive.  I WILL have enough SHARED experiences, eventually, to help me feel like I'm not a fish out of water. 

I guess today, Dory from Finding Nemo would like my analogy.  She would wink at me and say, "Just keep swimming, just keep swimming." 

Why the New "Full House" may NOT Work for Us~WAGR Wednesday

I'm listening to Evie upstairs... 

It's been a bad 1/2 hour.  Just 45 minutes ago, I was watching her sit in the recliner with her legs tossed carelessly over the arm in a "regular kid" kind of way.  She had her iPad in hand and was watching "Sam and Cat."

"Do you want to watch that on the Apple TV?"  I asked.  

"No, I just want to watch my iPad."  

Ok...no big deal.

        Until...

"Mommy, can we watch "Sam and Cat" on the Apple TV by mirroring?"  

Now, for any Apple households out there, that didn't sound like a foreign language.  But, for those who don't know, the Apple TV allows you to watch things from your iDevices on your TV...you can simply watch the videos and TV shows on there through your iTunes accounts.  That's what we normally do. 

However, what Evie was requesting was a feature called "mirroring" where you can transpose your iDevice screen onto your TV via the Apple TV.  So, either way, you could watch something on your TV that you would normally watch on your iPad.

Except tonight it wouldn't work. 

The iPad was giving us some message about the show being protected and couldn't be "shared" onto the Apple TV.  No problem, right?  Nope.  BIG PROBLEM.  She didn't want to just watch her show on Apple TV...she wanted it MIRRORED!!!

Seriously, watching it ON the Apple TV rather than mirroring?~It would have looked the same, sounded the same, lasted the same amount of time.  It would have been EXACTLY the same. 

But not to Evie.

      Because of anxiety.

            Because of WAGR.  

Because something happened today, or happened over the past two or three days which built up, and built up, and built up into one great big colossal meltdown. 

We went from Snow White dancing 

while the bluebirds perched on her shoulder 

to the girl in Poltergeist spewing vomit 

while her head spun around 

in a split second.

So, this takes me to why the new "Full House" on Netflix just might not work for us.  It may...don't get me wrong.  We'll give it a shot...but, I'm preparing myself for the disappointment.

First, if the entire cast is not there, we will be asked over and over again WHERE the missing characters are.  "Why isn't Joey there?"  "What happened to Rebecca Donaldson?"  "Why is there no Comet?"  As we try to answer the questions we will be missing the entire new episode which will lead to even greater confusion. 

Secondly, the actors, if the same actors return, will have aged and may be unrecognizable.  Did any of you parents out there live through the changing of the Marinas on "Fresh Beat Band?"  You know what I'm talking about!  Let's face it, we KNOW that Jesse and Rebecca's twins won't look the same, and we know that DJ will not likely have married Steve...

Thirdly, they won't all live together.  Even now, Evie watches, with great angst, the episode where Jesse and Rebecca consider moving out on their own.  "Where will they go?"  "Are they going to move, Mommy?"  "Where will Jesse live?"

Ev, you have seen this episode a number of times, 

you KNOW they don't move out.

So, as much as I'd like to believe that the new Netflix continuation of "Full House" will be a thrilling event in our home, I have my reservations.  Evie's brain gets into nervous knots, and the best way to untangle them is with things that are familiar and repetitive and predictable.  Life rarely appeases that need.  But, we try to safely introduce new and exciting things which can eventually become familiar and predictable as well. 

Well, it's now an hour later.  Things are a bit quieter upstairs.  I still hear her crying.  I still hear her trying to talk herself into a comfortable place in her brain.  In the midst of the meltdown I gave her medicine and Daddy has brushed her teeth, given her eye drops.  She's been back downstairs to apologize for hitting me and having a tantrum, because she "really misses Peppa [Pig] and really can't go to bed without watching an episode."  

She's slept in a hotel, traveled hundreds of miles to San Francisco to be examined and have bright lights shined in her eyes, been talked about regarding her vision, been to the cardiologist and had her weight, her heart surgery discussed, been up early and in bed late, and been to school where they are prepping for major testing next week.  I KNOW this kid is under stress.  I wish I could take it all away from her and tell her that she'll never have to worry about another doctor taking pictures of her heart, or her belly, or her eyes...but I can't.  

I can't help but to be there and to let her watch a "Peppa Pig" episode despite her behavior, because it's the best thing for her soul right now~that...a maybe mommy or daddy saying in that "Full House" sort of way:  

I'm there for you, Babe.

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.