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.

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...