Saturday Morning Coffee~Favorite Fridays

One of the Hefty Traditions, dating further back than I know, is gathering for Saturday Morning Coffee.  

Every Saturday morning, even in sub-zero temperatures, Jeff's parents, uncle and our family get together at one of our houses to chat over a few cups of coffee.  On special Saturdays we even might have other aunts and uncles join us! 

Pre-children, Saturday Morning Coffee was pretty much filled with discussing topics of importance in our lives:  work, homes, plans, politics, and headline news.  Once we had children to entertain, we incorporated some games like wii or eureka into the mix.  

The food at on Saturday mornings is always delicious.  I sometimes make scones from scratch, or there might be breads, muffins and rolls....but a really great treat is to have a yummy Kringle.  (Will they have those in Reno?  I don't think I'd even heard of a Kringle until moving to Wisconsin.)

Whatever we do, and whatever, we eat is not as important as the tradition and what it signifies.  

Saturday Morning Coffee is one of the things that makes moving to Reno a difficult decision.  Jeff and I wanted to live in one of our hometowns so we would have family nearby.  The close relationship that Evie has with both sets of her grandparents, and even her great-grandma, is evidence of that closeness in proximity.  

But there are a couple reasons that making this move is also important to us and to our growth as a family.

First, as amazing as both our families are, God is the ultimate priority in our hearts.  As much as I used to say we could never leave Madison because of the wonderful doctors, educators and our families, I realized when this opportunity presented itself that our faith must be bigger than our fears.  If we have the strong faith we say we do, then we need to show it by going where God sends us.  

Jesus asks that we take up our cross and follow him...and sometimes that means leaving the comfort that we have built around us.

Second, this will take our marriage, our family, to another level.  Jeff and I need to see what we, as parents, partners, and individuals can do for our family.  When Jeff's parents first wintered in Florida, I'll admit that we were a little scared to see how we could handle things without our built in "back up".  We would need to find a sitter for hockey Saturdays, and we'd need to figure out how to always pick Evie up from daycare on time.  That first winter, when we accomplished all of this, and when we saw that God provided all of the answers to those questions... I think we realized for the first time that we ARE good parents!  

We never knew what we were capable of because we never had to try anything different.

Saturday Morning Coffee is proof that family values still exist.  It's about coming together at a given time each week to catch each other up, and build each other up.  We are sure to FaceTime in whenever we can (although the 8 o'clock CST start time will be a challenge).  And we will always look forward to it when we are home for a visit.

Favorite Fridays~Our House

We moved in the week after returning from our honeymoon in Quebec City.  
I got tendonitis in my arm during the move,
I felt awkward and foreign in our new home.
But then we painted, 
And soon I learned that the faucets in the bathroom turned the wrong way.
We got two black kitties.
It became our home.

Swirling staircases,
Peeling paint on the porch,
A country kitchen,
With a window to the north.

A window; right next to my coffee pot, 
The first thing I see in the morning is:
Snow flying, 
Rain pouring,
Fog rolling,
The sun or moon glowing.

An office; still painted mint green today,
We thought we'd change it, but never did.
In that office I heard dad say that Grandma Ev was no longer with us;
And years later, my mom say that my dad was now gone too.

A living room; with the grape vine stencil border~my labor of love.
I also labored there for 17 hours before going to the hospital to have Evie.
There we rocked Evie when we brought her home,
Brought her home from specialist appointments,
From surgeries, 
From chemo.  
In that living room we felt the joy and pain of love.

A bathroom upstairs; once Pepto Bismol pink,
I was in there doing my hair when Jeff told me
Grandpa Turk had suffered a stroke, 
And just over a year later, it was in that same room he told me
Our niece Emma had been born.
Kitties rattle the door knob to get in to that room,
But then "meow" with agony when the door shuts them in.

The kitchen with floor to ceiling cupboards and ceramic tile counters, 
It's the first room I fell in love with.
Carving pumpkins, doing crafts on snow days, making popcorn.
Success with a recipe; and failure at times.
I was never afraid to fail in that kitchen,
It was a place where you could just try again.

The front porch...a small room filled with Oz;
Coffee in the morning, and a good book in the evening.
A place to listen to church bells, 
To smell the summer rains,
To sleep in the cold, crisp air when Evie had croup.

Our house felt like a stranger 12 years ago;
But feels like a best friend today.

We have grown up here;
Woken up to dark days, and suffered through painful nights, 
But felt God with us through it all...
Here, in this house.

We have celebrated here;
Enjoyed the company of friends and family; laughed, sang, and danced,
And known God was the one who blessed us with it all...
Here, in this house.

Do I Traffic an Un-lived Truth?

Do you ever get the feeling that God has sent you a specific and direct message; as if he entered into the room and is staring you in the eyes as he speaks?  

That was me today...

We; my husband, daughter and I, have been called West.  (I'm guessing you know this, since that post from the 6th of February sky-rocketed to my most popular post in just one day's time.)  You also know that its a scary and exciting opportunity for us.  With all that in mind, here is the scripture on which our sermon was based today at church.

So Jesus said to the twelve, “You do not want to go away also, do you?”  Simon Peter answered Him, “Lord, to whom shall we go? You have words of eternal life.  We have believed and have come to know that You are the Holy One of God."  John 6:67-69 NASB

We will follow God.  We are not going to take our own path on this one.  We are not going to let fear direct our decisions.  We are not going to fall into the rut of comfort-over-adventure when God is clearly asking us to step out of our comfort zone.

This is a pretty darn exciting time for Jeff and I, in all honesty.  It's a chance for us to experience the thrill of clinging to God by our "choice" rather than out of despair.  In the past we've been clinging to God through Evie's eye surgeries, Evie's battle with cancer, or the death of my father.  So...THIS?  This is GOOD STUFF!

Lord, to whom shall we go?

Why would we EVER go anywhere else than to Jesus?  He has been here with us through so much already; he IS our redemption, he IS the only good and pure thing in us, he IS the tried and true Rock that never changes even when the whole world changes in the blink of an eye.

Pastor Henry Ironsides said, "God forbid we traffic an un-lived truth."

www.graphics20.com

Exactly.  I can't sell God and his sovereignty to ANYONE if I don't try it out myself.  As a sales person, my greatest sales successes were through my personal testimonies of how a product worked for me.  Therefore, I can't sit here and write on my blog about how faithful God is to me when I don't give him my faith.

I can't wait to see how God reveals his glory over the next few months.  Selling a house, buying a house, final doctors appointments, IEPs, sad farewells, coordinating moving vans and cars,  moving our 11 year old kitty-cats...all the things that freak me out inside my mind don't begin to touch the peace that is in my heart. 

So I'll say it in Simon Peter's words, he said it so well... 

Lord, to whom shall I go? You have spoken the words of eternal life to me, Tammie.  I have believed and have come to know that YOU are the Holy One of God.

I will follow you.

Satan Must Want This Family Pretty Bad...

Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, and with your feet fitted with the readiness that comes from the gospel of peace.  In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one.  Take the helmet of salvation and the sword of the Spirit, which is the word of God.  Ephesians 6:14-17

 

I can honestly say that the first time I felt angry with God was when Evie had to have a fourth surgery on her left eye.  She was not even a year old yet, and we were looking at three surgeries over a three and a half month time span.  I felt frustrated and angry. 

I had a mental spat with God.

My Dad; the Protector from Evil

 

“Haven’t I been positive enough, God?”

"Haven’t I learned enough?” 

“Haven’t I been an example of your strength?”

Then my dad emailed me and expressed the same anger and thoughts.  He went on the write, “Satan must want this family pretty bad.”

There it was!  I had completely forgotten about Satan!  I had been living the gloriousness of God’s Will and mercy for a few months, and had forgotten that Satan was a power at work in the universe.  Satan was fighting for my soul…

I had forgotten to put on my armor…

Every day that things went well, I laid my head down and fell asleep with nary a thought as to how I would fend off the Evil One the next day.

We can’t let the Devil get a foot hold in our hearts. Satan is fighting for our souls, and he will go to great lengths to deceive us and distract us.  We must keep our eyes turned toward God.  He has commissioned us to a high calling and we must be obedient servants who put on the armor with which he provides us.  

I’ll leave you with some questions:

When have you felt angry with God?

What has helped you dig out from depression, frustration, or anger?

When have you felt God was at work?  When have you felt Satan was at work?

How do you put on YOUR armor?

 

The Five Year Plan...

The One Minute Writing Prompt for the day is "The 5 Year Plan"... 

Since a minute is about all I have today, I’ll keep it short and very simple.   

Where will I be in 2019?  What will I be up to? 

Jeff and I will be in our mid-40's.  Evie will be a TEENAGER.  Hopefully our kitties will still be peppering our floors with coughed up fur balls and they’ll still be addicted to dragging our socks out from laundry baskets.   

I'll be a published writer by then.  Maybe on my second book (wink, wink...).   

I’ll still be active in church with music and Bible study. 

Maybe by then I'll have started actually teaching Turbojam classes, as I was certified last fall but have yet to find a time to fit classes into my schedule.  Two classes a week would suffice, enough to help other people feel physically and mentally strong, and confident. 

We’ll see that Evie's anxiety is under control, and her kidney function is still good.  We'll have the hole in her heart taken care of for sure by then, as that's scheduled for this year.  She'll be in middle school, almost high school (yikes!).   

I think we'll all still be the three musketeers; Jeff, Evie and Tammie...better together. 

5 Years Ago...Evie's Make a Wish Trip...

I'll still be watching X-Files on Netflix, if it's still available, and I'll hope that Golden Girls and Little House will be added to the Netflix line up. 

Maybe I'll have convinced Evie to watch movies by then so I can get her hooked on musicals like Annie, Wizard of Oz and Summer Stock.   

I'll have an active and strong blog-presence on the web, and will have all the goofy things figured out like RSS, HTML, Disqis, Tumblr and Stumbleupon.   

I'll be filled with joy...because my past will have made me stronger, my present will be filled with inspiration and adventure, and my future will be wrapped in the promise of life eternal in Heaven with my Creator.

What's in your 5 year plan? 
What will have changed?
What will remain the same?



 

For Those Who May Be Turning 40 Today

• If you were a toddler who loved Tony Nano (Tony Orlando), you may be turning 40 today. 
• If you were too scared to sleep in your own room on Sycamore Street because of a Pink Panther book, you may be turning 40 today.
• If you know where your seat is…you always know where your seat is, you may be turning 40 today.
• If your nickname is Punkin, or Tessie, you may be turning 40 today.
• If you had to run to your grandparent’s house because your little sister was stuck in a snow bank, you may be turning 40 today.
• If you had posters of John Taylor, and Andre Agassi in your childhood bedroom, you may be turning 40 today.
• If you ever starred in any audio recordings of silly stories created by you, your sister and cousins, you may be turning 40 today.
• If you suffer from coulrophobia, you may be turning 40 today.
• If you lost your beloved cat Tigger this year, and along with him, lost a little piece of your heart, you may be turning 40 today.
• If you suffer from onomatophobia, you may be turning 40 today.
• If you’ve astounded everyone you know with your weight-loss and commitment to running, you may be turning 40 today.
• If you are a master of the viola, and teach others how to play it, you may be turning 40 today.
• If over half of your Facebook friends are the youth (now adults) who you helped inspire through your faith in God, you may be turning 40 today.
• If you married your first boyfriend, and he’s still your best friend, and you waited as long as God asked you to before bringing him into your life, you may be turning 40 today.
• If you’re one of your nieces favorite people in the whole wide world, you may be turning 40 today. 
• If your family adores you and cherishes you as a rare gem, you may be turning 40 today.
• If you’re my one and only sister, and I wouldn’t have it any other way, you ARE turning 40 today, and I can’t wait to see you and celebrate with you.

Happy Birthday, Jess!!! 

My Cup Runneth Over

I marvel daily at the blessings in my life.  I've learned to count my blessings whenever my heart starts to feel doubt or fear.  Today, as is fitting, my assignment for WEGO Health's National Health Blog Post Month is to write about the three things that I am most grateful for in my life.  And ,ultimately, to name the greatest blessing of all.  Considering all that I have to be thankful for, this is not going to be easy, but I know where the heavy hitters are.   

First, I have to say that I am thankful for WAGR/11p Deletion Syndrome, and all our WAGR families around the globe.  Certainly, when we, the Heftys, are

Girls Night Out as WAGR Weekend

 in the midst of pain and heart-ache, the syndrome does not seem like a blessing; but God holds up his end of the bargain when he says that he will work all things for our good, according to his will.  Ten years ago, I could never have imagined saying, "I'm blessed to have a daughter with WAGR/11p Deletion Syndrome." Heck, I don't think I could have said it five years ago!  But, within the last two years or so, I realize that I have gotten more good than bad out of WAGR.  I'm blessed by friends around the world; friends who don't even speak my language, but with whom I can share a smile or some tears, and we totally understand each other. Our hearts are connected, so no words are required.  I find that God shows his love for us so richly through our struggles with Evie's health; he provides in ways that I could never imagine.  

Family Fun in MN

Although I just spoke of my wonderful WAGR family, I would say the second thing on my list of top blessings would be my immediate family and friends. Through the years I have felt surrounded by love, support, faith and encouragement.  They have showered me with gifts, both tangible and intangible.  I have friends and family who pray for me, and for my family.  I have friends and family who call, send letters, write e-mails, and let us know that we are never far from their thoughts.  I look around at a world of hurting people who may have never been told that they are loved; but in my life, I have been told repeatedly.  I am so very thankful for that.  

Family fun in Boston

At the tippy top of my thankfulness list is my husband.  Once we were trekking through snowstorms to go to house parties in college, and years later we were trekking through snowstorms to take our daughter to chemotherapy appointments.  It's amazing where God has taken us through our years together.  We have grown closer still to one another the past few years as we worked through couple's Bible studies like Fireproof Your Marriage.   People will take certain verses out of the Bible, several of them about marriage, and use them to humiliate Christians, when in reality, the verses, (when read as they were supposed to be, "as a whole") mean so much more, and are extremely insightful.  

Skillet Concert at Lifest 2013

For example, I've come to realize that one of the curses of original sin is that marriage will be difficult!

"Your desire will be for your husband,

and he will rule over you.” Genesis 3:16

We are set up to be at odds with our spouses from the very beginning.  Husbands desire respect and wives desire love.  So, if the wives don't feel loved, they have a hard time respecting their husbands, and if husbands don't feel respected, they have a hard time loving their wives.  Well, now, ain't that a catch-22?  When it boils down to it, that's why we need God so much in our marriages.  Because without God, it would be impossible to overcome all the challenges that we face through out our lives.  I've realized that my best friend HAS TO BE my husband. He's the one who needs to know every part of me and hold me accountable for who I am.  I'm very thankful that Jeff and I both have a relationship with God, and continue to work on staying close to each other by remaining close to the God who glued us together with his Divine Plan.  

Finally, the ultimate of all thanks goes to God.  (Shocker, I know.  I totally wasn't leading up to that at all...)  I am amazed by the stories he writes for all of us.  He is the most remarkable creator and director of all things.  Just when I think that I have a GREAT plan, God comes along and really shows me up.  I am here on earth to learn and demonstrate that God's will is perfect.  

"Do not conform to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God’s will is—his good, pleasing and perfect will." Romans 12:2

Henna Tattoo
in Key West

I need to look different and act differently so that others will say, "What does she have? I want some of that."  In all things, in all circumstances, I am commanded to trust that his plan is better than my plan.  It's not always easy, but as I become older, and have more experiences to look back on in which that was the case, I find my first thoughts in difficult circumstances are more commonly, "God has a plan..."

Happy Thanksgiving, to even my friends that don't celebrate Thanksgiving!  This is a day of thankfulness created here in America for us to thank our God for his bountiful blessings upon our lives.  Can you look into the "cup" that God has given you today, and see the answered, as well as the answered prayers; can you say in your heart, "It is good?" Consider the jobs you prayed for that you didn't get and how much better off you are.  Consider the failed relationship that didn't lead to a marriage and family, and what you would have missed  had that relationship not failed.  Consider the riches and wealth that you have not acquired, and how it would have changed you if you had.   God's plan for us is limitless in joy and bountiful in good and perfect things; his plan is better.

My cup is full, and it is overflowing with blessings. 

When I Just Want to be Normal

WEGO Health's National Health Blog Post Month has gotten me thinking about and writing about things that I haven't give much time to in the past.  Today our assignment is to write about how, when, and what we reveal about the chronic illness that we, or our loved one, suffers from.

Fortunately, I was in a wonderful job as a dental office manager when I gave birth to Evie.  I'm so thankful that the leaders of the dental group knew me, knew my work ethic, and knew my heart; otherwise I don't think it would have been quite as easy to "believe" that I needed as much time off after returning from maternity leave as I did.  Evie's first year of life was filled with eye exams under anesthesia, ultra-sounds, and eye surgeries.  We were blessed with an amazing daycare provider who would allow me to bring Evie back after she had received her post-surgical check-ups; and she would fearlessly deliver the 12 + eye drops required for Evie's full recovery. 

Also, I was blessed to work with doctors who put family first.  There was a day that I had a complete mental breakdown and had to call in to work and say, "I just can't stop crying!  I don't know what to do."  I was told to stay home, rest, and allow myself some time while Evie was at daycare and I could just take care of myself.  The next day I went in to work and one of the doctors, Brad, pulled me into a meeting room and we talked about what had happened the day before.  I told him I started panicking about what our future would be.  Would Evie have autism, would she have cancer, would she have behavior issues; what was our life going to look like and how horrible of a mother was I to look at other children and to think, "Would Evie be able to do THAT if she didn't have WAGR?"

Brad then explained to me that what I was experiencing was normal.  I could actually benefit from treating myself as a person "recovering" from a traumatic experience.  He told me that I needed to recognize something; no matter how much I worried about it, I couldn't control what would happen tomorrow, let alone 5 or 10 years down the road.  Brad recommended I get the daily affirmations from Hazelden so I could remember to stay focused on "today."  The co-workers I had, that God put in my life, were no coincidence.  He surrounded me with just the right people to get me through.

Family Medical Leave Act (FMLA), the law that enables a person to take a set period of time off for a health condition without jeopardizing their job, helped cover my maternity leave.  It takes a year of working for your FMLA to renew.  It was no coincidence, I believe it was a God-incidence, that my FMLA renewed on September 14th of 2005 and Evie was diagnosed with cancer on September 22nd, just days later.  I had the law to protect me, but God to orchestrate it all.  In order to maintain our financial solvency, I had to work while Evie underwent chemo.  I worked Mondays through Wednesdays, 10 hours a day to maintain our health insurance.  My mother in law took off from her job those days so we didn't need to expose Evie to all the germs at daycare.  (Another blessing, another miracle, was that our daycare provider held Evie's spot at daycare even though we couldn't pay her for those 18 weeks.  That is a TRUE sign of God's provision.  Thank you, Doni...you will never know how much you mean to our family.)

Thursday was chemo day, and I'd take Evie to the appointments, and Friday was "the day after."  They were never easy days, and often we would end up back at the clinic because she would spike a fever and need antibiotics to treat pneumonia developing in her lungs. 

Back to the topic at hand though!  I'm so glad I didn't have to "explain" all of this to a new employer.  I think it would have been overwhelming to say the least.  So, for Evie's first 6 years of life, I never worked for anyone but those initial doctors who were with me when Evie was born.  They had faith in me, faith in God and were always so supportive of our family. 

Once Evie started getting "up there" in grades at school, it became evident that she would need more help with homework, as well as more support from her "mommy" who would observe things and try to make them right for her (like if the homework was too overwhelming).  I never really had time to take her to all the appointments she SHOULD have had either while I was working full time!  So, we ended up only do the "MUST-HAVES" like oncology, ophthalmology, and nephrology.  I left my job at the dental office and started to stay home with Evie a few summers ago.  This took some hardcore budgeting, but it was well worth it.  I started to go through all of the "recommendations" for Evie's health.  We were supposed to get her orthotics to help her walk, speech to help with her speech apraxia, and neuro-psych to help with her anxiety.  All of this was too much to handle with my full time job.  I signed on to be a substitute teacher and paraprofessional in our local school district and that became a dream come true. 

The people in the school district knew me and knew Evie.  Again, I didn't have to explain a thing!  AND, what's more, I didn't have to ask for time off as a sub, which always felt mentally draining as a manager.  To me, asking for time off was like saying, "I can't handle my job and these appointments too.  I can't fulfill both roles in my life."  For many years, Jeff took Evie to many of her appointments because at his job there was comp-time he could build up and use.  But I felt out of the loop and like an inadequate mother when I would miss all that time with Evie and her doctors. 

Who wouldn't love more time with this girl?

I'm now a permanent part-timer at the high school in town.  Evie and I are able to walk home from school together (which has diminished her behavioral issues after school that she used to have.)  The time that I have now with Evie has shown me that I CAN be a good mother to her.  I think I struggled for years feeling that I really had no relationship with her~I would be at work before she would even wake up, and would get home in time to feed her and bathe her and get her into bed.  That was no way for me, or for my family to live.  I'm glad I toughed it out at my full time job as long as I did, because I will never take this time I have with her now for granted.  I made a deal with God that if I got lazy and started to just take naps in the morning, or not use the free time for volunteering and giving back, that he could send me back to a full time job like I used to have.   Let me tell just say, I am a staying busy, but it's what works for me and for my family now. 

So, I guess it's clear to see that I haven't really felt the need to explain much to my employers.  I often feel I talk about Evie and WAGR (www.wagr.org)too much, because I think it often connects me to others.  I may meet someone who is blind, or has cancer, or is the parent of a child with sensory issues...I start talking about Evie, because it's common ground, it's a way to feel a sense of community, togetherness, unity.  I have mission to reach out to the hurting and connect with them, so how can I hold back when I know that Evie has taught us so much, and we have so much to offer others.  Educating others on rare diseases is a way to create a more universal understanding of "pain" and "recovery" from it.  Hopefully others can see it that way too, and not feel the need to hide their conditions. 

Under Pressure~Serving in the 11p Battallion, 350th Infantry, 1st Wisconsin Regiment

Poise, Confidence and Grace under Pressure

I know Who goes before me
I know Who stands behind
The God of angel armies
Is always by my side
The One who reigns forever
He is a Friend of mine
The God of angel armies
Is always by my side
Chris Tomlin~ Whom Shall I Fear, God of Angel Armies

Today we honor and remember our Vets who have protected our freedoms and our lives out of love for our country.  The WEGO Health Blog assignment for #NHBPM, on this Veteran's Day; (the 11th day of the 11th month), is for us to write about something we must do at a particular time of a particular day in order to deal with our (or in my case, my daughter's) chronic illness.  (That just felt like a whole lot of words in a really little space). :)

For Evie, the things we  need to keep on top of, and keep at as consistent a time as possible are Evie's medications.  She takes two meds for her high blood pressure, a prophylactic antibiotic for her recurrent UTI, an eye drop for her glaucoma and an ointment to keep her eye from becoming too dry.  Blood pressure medications are usually cumulative, or they build up to a point that they should be "constantly" in your system.  So we try as much as possible to keep those with breakfast and shortly after dinner.  We are also supposed to take her blood pressures daily around the same time to make sure we're comparing apples to apples.  The eye ointment can make her vision blurrier than normal (she's legally blind) and makes her eye goopy, so we keep that at night right before bedtime.  She's not as tempted to rub her eyes if she is getting ready to go to sleep. 

Besides medications, we have to keep on top of all her medical and therapeutic appointments.  Being that Evie has WAGR/11p Deletion Syndrome (www.wagr.org), and is at increased risk for developing Wilms Tumor, we started having kidney ultra-sounds when she was 6 months old.  She was diagnosed with and treated for Wilms Tumor at 15 months old until she was 18 months old.  I can say that one NEVER skips or misses a scan after that.  I usually start dreading the day early in the week of the appointment because of the "scanxiety" Even though Evie is now 8 years cancer-free, that scan-day can sure take me back to the days of chemo appointments, port-accessing, waiting for labs to ensure blood counts weren't too low...yuck.  Makes my stomach turn just thinking about it. 

We see ophthalmology every 6 months as well.  Back when Evie was an infant and we had trouble controlling her glaucoma, we felt like frequent fliers to Dr. Struck's office.  But, once we got the pressures under control, and her eyes seemed more "stable," we were able to spread out our visits. 

The first few years of a child with WAGR's life are VERY intense with lots of appointments, lots of medications, and lots of diagnoses.  I felt like we were hearing about something that was "wrong" constantly.  We always assure the new moms, dads, or caregivers who join our list serve support group that "it gets better."  And it does.  Quite honestly, whenever we would graduate out of a regular visit with a therapist or doctor, I would often cry.  They would become the "reliables" in my life.  I'd look forward to seeing Piper at OT, or Barb at Speech, or Betsy at PT.  That's a great, and positive part to our WAGR journey; I would never meet these wonderful people without WAGR! 

So, basically, our "11th hour" rituals are just keeping on course with medications and appointments.  The predictable, the routine, the uneventful have become cherished blessings in our life because for so many years it seemed like we just couldn't cut a break. 

From a "military" perspective, it's easy to see that we enjoy our moments of "peace."  It's a good day when I don't have to don my uniform and go into "Gorilla Mom" mode;  trying to be tough and not let Evie see my fear; trying not to show my tears through her tears.   That being said, Sergeant Tammie and Sergeant Jeff will obey any and all orders that come down the line of command in order to best serve Staff Sergeant Evie Jo.  We are proud soldiers in the 11p Battalion, 350th Infantry, 1st Wisconsin Regiment.  We serve our rare disease with other amazing soldiers, and our battle cry is: In God We Trust.

¹⁰ Finally, be strong in the Lord and in his mighty power. ¹¹ Put on the full armor of God, so that you can take your stand against the devil’s schemes. ¹² For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. ¹³ Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. ¹⁴ Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, ¹⁵ and with your feet fitted with the readiness that comes from the gospel of peace. ¹⁶ In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. ¹⁷ Take the helmet of salvation and the sword of the Spirit, which is the word of God.¹⁸ And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the Lord’s people.
Ephesians 6:10-18 NIV