The Healing Power of Music

The song "Thank you for the Music," sung by ABBA in the 70's and 80's has a great line, "Thank you for the Music, the song their singing, thanks for all the joy they're bringing, who could live without it?  I ask in all honesty, Where would I be?  Without a song or a dance what are we?"  That pretty much sums up the power that music has over me.  I can be transformed by one musical note.  For National Health Blog Post Month, our assignment today is Top Three Tuesdays: Name three songs that can get you out of a low point. 

It's brutal trying to scale down my list of favorite songs.  Music makes my world go around, and there is always a song that seems to rise up from the others and become my anthem for different seasons of my life.  During Evie's chemo, for example, it was Held by Natalie Grant.  Songs seem to surface amidst the stormy waters of life and carry us through until we might find some still waters. 

Currently, my songs that inspire me, and transform my day are Go Glow by the Newsboys, American Noise by Skillet, and, and song that always seems appropriate to me is Martyrs and Thieves by Jennifer Knapp. 

I sing at the top of my voice when I listen to any of these songs, and they are usually the ones I'll sing in the shower.  Go Glow reminds me to shine~everyday.  People watch me and know that I'm a Christian~but I'm still also a sinner, here in a body of the earth, not of heaven.  So, I need songs like this to lift me back up when I let this world get to me.  This song also makes me think of Evie and how she glows.  Her worship of God is what God wants all of ours to look like, but she doesn't have that "social filter" the rest of us do which makes us hold back.  When we go to concerts people will say, "Can I photograph your daughter?"  They want to capture what she has in her spirit.  I'm sure the pictures don't do it justice, however.

American Noise is so perfectly timed for today's society.  There really is a lot of noise out there; horrible things that are happening.  The typhoon in the Philippines, murders in rural Wisconsin, families falling apart, drugs taking lives and dragging them straight to hell in the meantime.  Being a mom of a daughter with WAGR, I find the noise is often in my head.  I try to sort out appointments, medications, and priorities.  I try to turn off the voices of fear and doubt in my head.  There is so much NOISE, NOISE, NOISE, NOISE (to quote the Grinch who stole Christmas.)  But, in American Noise we are encouraged to "lift up our voice, take all the noise and make it into music."  Well, now~how lovely is that?  My blogging here is a form of me transforming noise into music. 

Last, but not least by any means is Martyrs and Thieves.  That song goes straight to the core and gives me peace.  It's a song about the redemption we have through Christ.  It's a song about our sinfulness, the inability we have to flee from sin because we have a sin nature, and how Christ can make us Kings and Queens someday if we ask him to be our Savior today.  I mess up all the time.  I know what God wants me to do, but I am stubborn and selfish.  And this song takes my resistance and shows me how much I am loved and that my life is worth more than throwing it away for selfish desires of the flesh.  As long as I'm here, I'll be a sinner, but hopefully that will just show others how great our God is.  "Like a lamp on a hill, Lord I pray in your will, to reveal all of you that I can." 

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

What Else Can We Do?

Lord Above, I need a Miracle... (quoted from Third Day's song Miracle)

Everyday I anxiously await my next chance to sit at my computer and write about the "next" topic for the 30 Day Blogging challenge from WEGO Health in celebration of National Health Blog Post Month.  Today's assignment is to write about alternative medicines for the health condition with which we live.  Now THAT is an interesting topic to explore...

The first pressing health concern we had with Evie was when she was just a newborn.  She had colic.  It may not have been a life-threatening illness for her, and colic certainly does not only strike those with WAGR; but it was sanity-threatening for me.  At the height of her colic cycle, Evie would start crying at 10 am, and wouldn't "turn off" until between 8 pm and 10 pm that night.  Yes, a solid scream-fest for about 10 to 12 hours a day.  We made a couple of trips to the ER because the doctors weren't necessarily comfortable just diagnosing "colic" for a baby who had a strange condition like WAGR.  They didn't want to just stamp her forehead with "cranky baby," and for that we are thankful. 

I had visited my midwife for my six week check up and she asked how things were going.  I talked about the colic and how horrible it was and how crazy and isolated it made me during the day.  She suggested taking Evie to see a chiropractor.  We quickly scheduled an appointment with our local chiropractor and after her first adjustment Evie fell sound asleep for 4 hours...yes...sleeping in the middle of the day...I hadn't seen her do that in weeks!!!  We took her back for quite a few adjustments over the course of the next year, and thoroughly believe it was a great therapy for her and helped her avoid many ear infections and colds that may have otherwise occurred. 

Aside from Evie's colic, the rest of the next few "ailments" are not things that are common to most infants and toddlers...unless, of course they have WAGR/11p Deletion Syndrome.  At three months old, we learned that Evie had a pretty raging case of glaucoma as well as cataracts.  She has an eye condition called aniridia, and that means there's no iris in the eye.  The eye basically stopped developing at some point which means all the systems of the eye are under developed.  She had several surgeries and countless exams under anesthesia in her first year of life to try to get the glaucoma (eye pressure) under control.  We had eye drops, of course, but the pressure needed to be decreased to help her be comfortable and to keep the optic nerve and lens of the eye healthy. 

The other diagnosis with which we were faced early on was Wilms Tumor.  Evie, having WAGR, had a 50-60% chance of developing Wilms Tumor (solid tumors in the kidneys).  We found the first signs of tumors when she was 15 months old.  She had been getting ultra sounds since 6 months of age in order to watch for the tumor development. 

Now, when one has a genetic deletion, as Evie does, involving the 11th Chromosome, then there are several genes that could be deleted; they include, but are not limited to the PAX6 gene and the WT1 gene.  These genes affect eye and kidney development.  Thus, it's obvious why Evie suffered from the symptoms that she did.  Because this is a genetic deletion, because her DNA structure is what makes her susceptible...I find it very unlikely that many "homeopathic" remedies could prevent or cure these conditions.  Therefore, we don't make her eat broccoli to prevent a recurrence of cancer, we don't avoid the sun (but we are smart about sunscreen), we don't get all militant about vitamin supplements or anything like that.  Evie underwent a partial removal of her kidney and 18 weeks of chemotherapy in 2005-2006.  She is legally blind as a result of her eye condition.  We battle her high blood pressure, which was a result of the Wilms Tumor and subsequent treatments, with a low sodium diet, weight-control, and medications.

We've done physical therapy, speech therapy, and occupational therapy as ways to counteract many of the neuropathy that results from the chemotherapy.  They have all helped tremendously.  "Brushing" therapy, Modulated Music therapy, and Joint Compressions have proven to be some of the most rewarding for Evie in helping her learn to control her anxiety and adjust to her sensory needs.

What has proven to be THE most effective, broad-spectrum, alternative medicine for Evie, myself, and my husband has been prayer.  We don't deny Evie any medical treatment that is required, don't get me wrong here.  However, we supplement the modern day medicine with a hearty helping of prayer and petition to God.  He has instructed us not to worry about anything, but instead to pray about everything.  God is Evie's greatest physician, and our greatest advocate.  God has answered numerous prayers that we have lifted up to Him.  He once answered my prayer so immediately as I was prayer journaling when Evie was taken back for surgery for her glaucoma; that as I was writing, the doctor returned to our room and said, "Well, no surgery today.  We got her sedated, I took her pressures and they were fine."  Did she need surgery later on down the road?  Yes.  But she didn't need it that day.  God gave us a break that day; a rest from our stresses.  God gave us a miracle when we needed it the most.

God answered my prayer on the way home from the one of Evie's unplanned trips to the hematology/oncology floor of the clinic in Madison. Evie had spiked a fever and she and I went in so she could get IV antibiotics; it turned out she had pneumonia.  I was crying out to Him on our way home in the car; asking Him where He was in the midst of all of this.  I said, "I know you're here.  Show me!"  When I got home with Evie, I laid her down and checked the mailbox.  In it was a card from a family member (who wishes to still remain anonymous), and a check for $1,000.  I just sat down and bawled my eyes out.  Yes, God still does miracles, God still answers prayers.  Some people would explain those things away..."You received good things because of your attitude."  "You receive good things because you do good things."  "It's the energy around you that makes people want to do nice things for you." 

While we sit in this world, trying to make sense of all the pain and suffering, why, oh why, do we deny God's miracles when they happen right in front of us?  We ask, "Where is God?" and yet He shows himself to us everyday! 

Evie has a story to tell.  God shows His power and might in her, and through her, by taking her weakness and making her strong.  I cannot deny His presence in our lives.  I will not turn my back on the greatest medicine available to all of us.  It doesn't come in a bottle, and it requires no prescription.  National Healthcare is not necessary for all of us to have access to this miracle drug.  The Creator of the Universe loves us so much that He has promised this medication; with the ultimate healing power, to all of us if only we ask for it.  The main ingredients of this medication are love, mercy, and forgiveness.  Finally, the cost of the medication is 3 nails, one cross, and King with a blood-stained crown of thorns.   

Just Admit It: The Thing we "Don't Talk About"

The Dress that I didn't Know She'd Wear

Today's assignment for WEGO Health's National Health Blog Month 30 Day Challenge is to "write about something that people do but don't like to talk about or won't admit doing."  My spin on this topic is that there is a question that people hate to ask when they learn our daughter has WAGR/11p Deletion Syndrome, but we know that it's the proverbial "elephant in the room."  What is Evie's life expectancy?

I'll answer that right upfront so I don't prolong the anxiety any longer than necessary.  We don't know.  WAGR/11p Deletion Syndrome  hasn't been "around" long enough to know that, and there aren't enough cases to provide a statistically significant answer.  I CAN say that we know of people with WAGR who have lived into their 40's.  And, I can say that with continued awareness and research we will see that life expectancy grow, just as it did with Down Syndrome. 

But I'll share today the feelings and thoughts that I personally experienced when Evie was diagnosed with WAGR.  We had been given a cute little 18-24 month sized dress with matching hat when Evie was born.  It was brilliant gift, because we know that one receives lots of newborn to 6-9 month items at the birth of the baby.  I loved that dress; but when we got the WAGR diagnosis and began reading about cancer and kidney failure, I thought to myself, "Will I ever see my daughter wear this dress?" 

We found the International WAGR Syndrome Association on-line (www.wagr.org) through our wonderful general practitioner.  When I finally got the courage to sign up for the on-line support group, (I just wanted life to be as "normal" as it could be while I was on maternity leave), I was thrilled to receive an e-mail back from Kelly stating, "My daughter Caroline is 22."  Hallelujah; I found a ray of hope.  After joining the support group, and "meeting" all the families; sharing the joys, the frustrations, the heart break, the challenges and the victories, I realized that our diagnosis was the not the end; it was just a beginning. 

Joining the host of families around the world who love and care for their children, their nephews and nieces, their grandchildren with WAGR has been one of the most rewarding experiences of my life.  Each time a new family joins our groups, we each have to face our fears all over again; but what we also are able to share is the overwhelming joy that people with WAGR seem to exude in every smile, every laugh, every dance, and every song they sing.  We have our own language, our own unspoken understanding that we all face the same fears, but we also all face the future together. 

So, admitting that we don't  know how long we have; that doesn't really mean anything to me anymore...we don't know how long ANY of us have.  What matters is how we spend the time that we DO have.  I sometimes spend it in tears of frustration over the number of appointments we have to take Evie to, or over the thoughtless things that some strangers might say.  More often though, I spend my time in awe of how far we have come, what we have experienced (including LITERALLY modern-day miracles like not having a heating bill for two months while Evie was on chemotherapy), and how God continues to bless us THROUGH Evie and WAGR.  It's God's goodness to us that moves me to write, to volunteer, to sing, and to continue to live one day at a time.

For those who know us, they know that we never really stop going.  The question  about life expectancy is likely why.  We will never take one day for granted because we realized that each day is a gift.  As a man once wrote for Carlton Cards (poor guy signed away a gem when he wrote it for a greeting card):

Life is not measured by the number of breaths we take but by the moments that take our breath away

Words to Inspire, Challenge, and Encourage Me

As I participate in WEGO Health's blogging challenge for the month of November, I am especially excited about Favorite Fridays.  Today I am asked to write about my three favorite quotations.  Since I have so many people who have inspired me along my journey, and so many words of encouragement as my family and I have been thrust into the world of rare disease with our daughter's diagnosis of WAGR/11p Deletion Syndrome, it is QUITE difficult to narrow my favorite quotations down to three!  But I will try...


First I'll identify my most INSPIRING quotation.  They are the words spoken by Jesus in the Garden of Gethsemane on the night of his betrayal, shortly before he was arrested and taken away to his death sentence.  "Father, if you are willing, please take this cup of suffering away from me. Yet I want your will to be done, not mine." Luke 22:42

How many times have I cried out the same thing?  It gives me inspiration to know that the King of Kings, the Rock, the Firm Foundation, that even HE had a moment of fear in what was being asked for him to do.  That is why I named my blog what I did!  My Cup Lifted.  God has given each of us a unique life, a one of a kind journey for us here on earth.  When I think about what God has asked Jeff and I to do, what he has asked Evie to do, what he has asked all of our friends and family to do as we learn and live with WAGR/11p Deletion Syndrome...sometimes it becomes overwhelming.  But Christ, in his final hours took his cup, lifted it to God and said, "Not my will, but yours..." and I do the same now.  Whatever your will, God, give me the strength, peace, and faith to endure and finish this race.

My second quote I chose is one that CHALLENGES me.  John F. Kennedy quoted it, but the phrase actually originated from a man named Phillip Brooks.  He said, " Do not pray for easy lives. Pray to be stronger men! Do not pray for tasks equal to your powers. Pray for power equal to your tasks."  Wow...so I'm not supposed to want things to be easier, I'm supposed to want to grow stronger? 

Yes, that is exactly it-And on those days when I wish I could just run away from all my obligations and start anew, I should be praying to be stronger, not for my load to be lighter.  And when I feel overwhelmed by the all the "plates that I spin", I need to realize that "God does not call the equipped, he equips the called." (I would love to cite this, but as Barbara Brooks wrote about this quote:  I once googled that to find the original quote and it is attributed to everyone from Aristotle to Oprah!).  In essence, my challenge is to remember that I'm not on this journey alone, and that God gives us everything we need while we're here on earth. 


My final "favorite" quote is one that provides ENCOURAGEMENT to me.  It comes straight from a missionary known throughout the world.  Billy Graham wrote, "My beloved suffering saint, everything is under control. His will for you is being wrought in the whirlwind and in the storm, and His blessed presence is in every cloud of distress that crosses your pathway. The Master Gardener is purging your life so that you might bring forth more fruit and more glory to Christ in this world and in the world to come."  (Accessed 11/8/13 http://www.billygraham.org/articlepage.asp?articleid=1094).  In our fear, we are not alone; in our doubt, we are not alone; in our loneliness, we are not alone.  Not only are we not alone, but we have a Master Gardener who is pruning off the dead parts of our lives and giving new energy and nourishment to the parts that are able to bear fruit!  I can rejoice in pain and suffering because it means that I will be the bearer of greater gifts in the end.

I love that we have so many wonderful philosophers, leaders, teachers and preachers from whom we can draw inspiration for today, and hope for tomorrow.  In the end, however, it is plain to see that all I have leads me back to the One who has me, my Father in Heaven.  He is patient with me in my doubt, and loving to me in my fear, and strict with me when I fall out from under His grace-and every night He gives me slumber so I can awake to His new mercies in the morning.


 

My Magical Bag of Tricks

I love handbags, and own many. They vary in size, color, shape, and style. As the mother of a child with a rare genetic disorder called WAGR/11p Deletion Syndrome, however, I find that I carry some interesting items from time to time.

The first, and most critical things I carry are fidget toys.  Evie is "sensory-seeking", so she wants to feel different textures and experience lots of sensory input.  Most often, the fidget toy is a type of prickly rubber ball.  She can roll it in her hands and feel the light poking sensation of the prickles.
 

Another sensory helpmate I carry is a chewy.  This is a rubbery item for Evie to gnaw away at, rather than gnawing on her little fingers. Evie's chewy is shaped like a "P" and textured with bumps.  Some of the chewies are even flavored.
 

We also have chewelry for her.  These are chewing necklaces and bracelets that are plastic and coiled together much like the key chains people wear on their wrists.  We've had to establish rules for the appropriate uses of chewelry.  Being a victim of the laws of physics, I have been hit too many times with high-speed, projectile saliva. Objects in motion tend to stay in motion; therefore, Thou Shalt not Flick Thy Chewelry out of Thy Mouth is the most important rule.  

Since I've already got our taste buds going, I may as well mention fruit snack. There's nothing better than a little snack to help pass the time.  Fruit snacks are nicely sealed to stay fresh; small and squishable enough to conserve space; and, if they are shaped like characters from some favorite TV cartoons, then one can even make the snack last longer by using the characters to act out a skit. "Don't play with your food" is a mommy-ism from a simpler time.
 

We don't just play with our food.  I like to carry some cards and dice.  Waiting with nothing to do is torture; especially waiting for a blood draw!  I keep Evie busy with card games and dice games. Dice are especially portable, and provide a nice "fidget" activity as well.

Finally, I have to carry hand sanitizer with me.  The primary reason I carry it is because Evie has a poor immune system.  She had chemotherapy to treat her Wilms Tumor between ages 15-18 months. During, and for several years after, the treatment, Evie seemed to catch any and every flu-bug around.   Usually these bugs would turn into pneumonia and a UTI, (urinary tract infection).  As one can imagine, I became quite germaphobic.

The other reason I like hand sanitizer is because no two bathrooms are alike.  In one bathroom the faucet is manually turned on and off while in another it is turned on by a sensor.  Some sinks are closer to the "washer" while others are set back far into the recesses of some decorative back splash.  Often, despite Evie's desire for independence, she is either too short to reach the faucet, OR the counter top is so full of water from the previous sink-patrons that Evie's reach toward the faucet would result in an unwelcome soaking of her sleeves.  I determined that hand sanitizer was definitely the way to go for this mommy.

So, there it is. The most important, gotta have it, "don't-leave-home-without-it" contents of my magical bag of tricks.  While I may not carry a coat rack like Mary Poppins, I do have a handy-dandy little arsenal of boredom-busters. I will sometimes even include a little a spoon and some sugar-substitute for when life's nasty medicine just won't go down.

Restricted Diet: Avoid Sweets and Sins

I've struggled with managing my weight, and I've struggled with managing the condition of my soul.  I really don't find that they are very different.

In order to maintain a healthy weight (at 5'3 I once weighed 165 lbs. and I now weigh 127 lbs.); I have to log-in to my app on my iPhone (myfitnesspal) and track my calories daily.  I look at how many calories I've consumed, subtract out the calories I've burned with my workout, and I have to stay around 1500 calories a day to maintain my weight.  Some people think, "Why are you trying to lose weight?"  I'm not!  I'm trying NOT TO GAIN weight.  Any and every time I stop tracking my calories; tracking every little thing I put in mouth, I WILL GAIN WEIGHT.  I'm sorry, but I cannot afford to buy a new wardrobe every 6 months simply because I have the desire to eat a jar of peanut butter.

Sin is the same way...but for some reason, we don't say to people, "Why do you study your Bible EVERYDAY!!!"  "Aren't you born again?" ("Aren't you skinny?"  "Why are you tracking your calories?" Sound familiar?)  Number one, we typically don't meet people who study their Bible every day.  Just like you might not meet someone who tracks their calories every day.  But I can tell you that I must read my Bible every day for the very same reason that I must track my calories every day. 

IT'S A SLOW FADE...

It really is!  You don't just go crashing into sin...life-altering, person-shattering, soul-killing sin!  No!  Sin creeps up...it's the little step over the line, and then, when nothing happens, you take another step over that line, and then you think,  "Hey, lightening didn't strike, I don't feel the flames of Hell at my heels, I'll just go a little further..."  That is how sin creeps in...that is how weight creeps back in too. 

When I'm not in the Word; listening with a quiet heart to what God wants to tell me, that is when sin creeps silently into my soul.  I find myself feeling proud, paranoid, and petrified.  Those feelings are what can lead me to doubt the plans God has for me, and to start making plans of my own.  It never turns out well.  I can honestly say that my plans have NEVER been better than God's. 

Whether I'm reading John 3:16 or tracking my Panera Greek Salad 380 calories, the reason I'm doing it is the same (relatively speaking); because I'm a sinner, and I need to be held accountable.

A Letter From My Grandma Ev

I found a true gem the other day.  A card from my Grandma Ev, dated from 1991.  Based on her response, my guess is that my letter to her was about school, and perhaps some of the "picking on" that I received as a little goody-goody and bookworm.  I love this letter.  It reminds me of how I made it through and where I got faith...and, knowing that she was praying for us every day still makes me feel better today.  Is it any wonder I named my daughter after her?  I typed this out as Grandma wrote~grammar and spelling and all...

My little Sweet heart Tammy, or is it Tammie?  You are Grandma's little Sweet Heart, you know.  And I thank you for thinking of me! 
And you know what I do when I don't fall asleep right away?  I start thanking God for all His goodness to me~like Protection, and I always can find so many times He has been there to guide me and soon I'm asleep!  Always remember to Thank Him, cause without Him we'd have nothing and He likes our love too.
And when we feel the bottom is falling out, and you've no place or person to go to, God will always make a way, and guide you thru it!  And you know what?  Your friends don't know or rely on Jesus or they wouldn't complain all the time, rather count their blessings...If we obey His laws we are happier too! 
Pray for her and Grandma will too.  I pray a prayer cover of salvation and protection over all of you every day!  Ask God to fight your battles, and He will! 
Boy and only one month to go and school will be out and will you have time then to lay in the sun and relax.  And by that time Gram should be thru raking and etc. and you can always visit me!  Right?
Congrats on your rating in Spanish and thank you for the poem.  I have it sitting here and now thanks so much for thinking of me.  I love you all so very, very much and so does Jesus.  Grandma Ev

The Fear I Fear I'll Pass On...

I looked at Evie tonight at dinner and said, "You know, Evie, with your scabbed elbow, patch of cellulitis on your other arm, scabby bug bites on your legs, and the Band-Aid over your toe that the toenail is falling off of...you look like any normal kid." ...and my heart swelled.

Having a child who's blind, having a child who's got anxiety that is "off the charts" (according to her medical reports), having a child who's got a sub-average IQ and is quite vulnerable in the world; that could all lead my husband and I to say, "No, thank you, we can't do that," or "Gosh, we'd better stay home," or "I don't think that's safe."  But I have been learning that I don't want to "pass on" to Evie any fears of this world that she shouldn't have.  I don't want her to FEAR doing things that other kids should and would be able to do.

I look for ways to make things "doable." I want her to experience the same things, even if it's a different way.  That's why we went to Me and My Gal camp at Camp Black Hawk in Elton, WI.  It's a Girl Scout camp, and as a mom, I was able to go too!  I knew that Evie would not be able to handle a day-camp, let alone a sleep-away camp, at this time with her anxiety and inability to advocate for herself.  So, I signed us up for camp together. 

Mind you...I am not "outdoorsy".  Actually, my mom and my sister were PROBABLY waiting for me to call them in tears myself the 4 days Evie and I were at camp.  Seriously, I couldn't handle a tent in our suburban backyard when I was younger.  I found a eyelash in my mouth one time, and was convinced that I had swallowed a wood tick and would likely die within 48 hours.  So, you put this mommy in the deep woods, in a platform tent, with a bathroom about a 3 minute walk to the lake, with no electric in our tent, with mosquito netting around our cots to "attempt" to keep out pests....well, I was a little wee bit outside my comfort zone.  But I thought to myself, "You, Tammie Jo, will be brave for your daughter this time.  You can no longer be wimpy."

And we did it!!!  What's more, we enjoyed ourselves, and can't wait to go back!"  Did the mosquitos and spiders and deer fly, and horsefly, and ticks drive me batty? (Yes, there were bats too!)  Of course the did.  Did I feel creepy and crawly, and say a few extra prayers every night and every morning?  You bet I did!  Did Evie get frightened by the darkness in our tent, and finally did we agree to sleep in our car to have the light of the moon? You bet she did!  And was I MORE than happy to sleep in the car as well, because it meant fewer bugs...aaahhh, that would be a BIG, YES!  We slept darn well in that little blue Camrey...Evie was actually crushed when I told her we were NOT really going to sleep in it when we got home.

Despite my fears, despite HER fears, we: went horseback riding, made journals, helped "hop" for our table, went out in the row boat just the two of us, tie died shirts, made polymer clay jewels for a necklace, sang songs, roasted marshmellows, swam at the lake front, showered in those public showers with moths flying around that were the size of small birds...we did it...and we can't wait to go back next year and try to do even MORE than we accomplished this year.

And isn't that what life is all about?  Taking steps toward doing things you never thought you could?  I had fessed up to Jeff about two days before the trip that I was TERRIFIED.  But I knew that God would never leave me, nor forsake me...so I knew that I had the biggest most powerful God over all the Universe on my side. 
Whom, or what, shall I fear?

Then, when I had some quiet time and was reading a recent edition of Future Reflections (www.nfb.org), I read an article called, "The Federation in Your Journey; The Courage to Try."  It was written by Mary Ellen Gabias, who is legally blind.  She wrote about a "paradigm" that she has lived with:  DON'T MOVE.  She told a story from when she was five years old and had gone out to play with a friend.  Her mom had said, "Don't go near the side yard.  Workers are repairing the septic tank."  (vol. 32, no. 1, p 1.)  However, Mary Ellen did not heed her mother's warning, and she ran "full speed ahead".  As Mary Ellen said, "Gravity won."  Her mother told her, "You pay a price when you don't pay attention."

Mary Ellen goes on to write that she was so ever grateful that her mother had not said, "Don't Run!  It's too dangerous for you."  However, she also goes on to write that, "A long white cane would have made things far easier for me, but my parents told themselves a story that, along with a tin cup and a handful of pencils, the cane was part of the beggar's badge.  I became afraid to move because I lacked the tool that would have helped me."  (p. 2)

Wow~what a sobering thought.  I DO need to make sure that Evie feels capable to do things on her own, and not afraid that MOVING can be dangerous.  I'm so thankful she has her wonderful Ms. Kay to teach her cane travel.  Ms. Kay gives Evie so much confidence and courage and KNOWLEDGE that she requires to become independent.  I even learned on a cane-walk with them NOT to hold Evie's hand, and NOT to try to assist her on the stairs.  Stay out of her way, she knows what she's doing when she has that cane in her hand.  On several of her walks this past week, I have been trekking right out onto the street to cross and Evie has stopped and checked and listened...ooops.  Do I ever feel sheepish then! 

So, Evie has her share of bruises, and bumps, and blemishes.  But, really, that is a thrill to me at this point in time.  I see that she is not afraid to be a kid.  I think that is a big accomplishment, and something we can continue to build on as we deal with her anxiety, and as we deal with school becoming more difficult, and as we deal with the heart aches that come with being a teen ager in the next few years (yikes!). 

And I'll be praying for her AND for me.  That I shelter when sheltering is required, and I let her soar when her she's just itching to get out of the nest. 

To My Dad, A Year Later

Dad,

It's been a year since I saw you, heard you, hugged and kissed you.  It feels like ages.

I watch old videos to hear your voice.  That same voice with which you used to bicker with me.  Always my contender; we'd match up nose to nose over topics like:  football vs. "Life Goes On", just HOW smelly and bad for you cigarettes were, and whether or not I REALLY was "that sweet girl all your teachers" told you about at parent/teacher conferences.

However argumentative we could be, we also shared a deep respect for one another.  I respected your courage as a police officer, your loyalty to your brothers on the force, and your ability to withhold hasty judgment of others.  And I know you respected me.  You believed more in me than I did in myself.  You wanted me to be a lawyer; but I didn't believe I was capable of that.  You believed in our ability to parent you special little "Sunshine" Evie; and you became our tender-hearted cheerleader on her Caringbridge site.  Your writing moved and inspired the countless visitors to her site, and in everything you glorified God by lifting us up during some very dark days. 

And, speaking of God~you always did, and were never ashamed of your faith.  You knew that you, and all of us, were born with a sin nature, and that we all needed Jesus.  You even tried to remind me that Jesus could be my Rock when I felt alone and scared. "Do you know who we're supposed to go to when we're scared and don't know what to do?" you bravely asked me, the 'crying-hypochondriac-nervous worry wart' that I was.  And my brilliant response?  "Dr. Quinn?"  You replied with a chuckle, "I was thinking of Jesus."

You wrote us letters at Christmas, expressing to us your love, admiration, and adoration of us; your girls.  We always knew to read those letters with a box of Kleenexes. 

So...how could it already be a full year without you here?  And, yet, how is that it's ONLY been a year? 

As an aside, the infomercial industry continues to succeed in spite of your absence.  I didn't think it could.  The Chill-ow, the 9/11 minted collectible coins, and the car visors that have a flap that darkens your windshield like window-tinting would~All of them, STILL PROSPERING!!!

Dad, your legacy is embedded in our hearts.  You taught us love, respect, tender heartedness, faith, and...well...how to turn a potentially short story into a doctoral dissertation. 

Love you, and miss you...

Peanut

P.S. 

Lena stepped up to the clerk in the department store and said, "Can I try on dat dress in da window?" The clerk responded, "We'd really prefer dat you try it on in da dressing room."

Aanenson, the wealthy milk tycoon was telling Ole about his new girl friend. "She's 30 and I'm 65. Do you tink I vould have a better chance of getting her to marry me if I tell her I'm 50?" "No," said Ole, "I tink you vould have a better chance if you told her you vas 80."

My Op Ed for the Wisconsin State Journal for Mother's Day

Tammie Hefty: Give mothers real help by expanding family medical leave : Wsj

F.I.T. Forever in Training

F.I.T....Forever In Training...

Is it just me, or does life itself keep us fit?  I as thinking about this as I worked out today...pardon the rambling trail~try to stay with me...

I've been doing the Chalean Extreme program now since September.  It's a 90 day program of weight-lifting and cross-training the way the "pros" train.  These can be "work until you puke" kinds of workouts.  Sometimes I can't brush my teeth because I can't lift my arms.  But I LOVE the challenge, and I LOVE to see the results and feel how strong I'm becoming.  So, I keep doing it over and over again.

I told Jeff the other day:  "Each time I do these workouts I think to myself...'This workout feels different because now that I'm stronger, I hold my posture and positions differently which then makes the exercise even more effective so then I get stronger still!'"

Isn't that just the way life is?  We have been woven together by our loving God who designed us in such a way to grow stronger and stronger as we undergo duress so that we come back and can fight again another day. 

God didn't just throw WAGR Syndrome in at me and say, "Here you go!  Let's see how you handle this!!!" Instead, he gave me a family that had my Uncle Joel...a family that had chosen to take home their baby boy with Down Syndrome even when it wasn't the typical way things were done.  I grew up going to my mom's room at Washington, and then Lake Elmo and working and playing with the kids who lived with multiple disabilities.  My sister and I danced at the ARC dances with Kyle, Joel, Lisa, Jerri, Alice, Kathy, Mary Kay...and so many more awesome friends.

Stronger...then I was in school, and I was picked on.  I was awkward and nerdy and quick to cry~the perfect target.  I wanted to leave school.  I would wake up in the morning crying because I didn't want to go.  I enjoyed talking to my teachers more than talking to the other students because I was scared.  I knew I was different.  I knew that I wanted to bust out...I wanted to be fun...I wanted to not be awkward, but how do you change the way people already see you?

You become stronger...you go to college and join EVERYTHING!  And I did.  I tried to go to a school where there would be very few people who already knew me.  I didn't want to be the nerd...I wanted to be "fun"!  I think I was, too!!!  And, having been picked on in High School hopefully helped me become nicer to others~and maybe someday it will help me when I see other kids who are picked on~I can help them realize that there is hope for tomorrow, if they just can get through today.

Stronger...I went to grad school and learned to read statistics and data and lots of research.  Well...that certainly helps when learning about WAGR Syndrome.  :)  Not an accident.  Not "for nothing."  Am I using my degree?  You betcha.  Oh, and that's when Jeff and I started dating.  So, had I not gone to grad school...would there even be an Evie Jo?

This leads me to one big philosophical point...we are forever in training...we are NOT a product of evolution...I am not something that developed from a blob...I am an interconnected amazing system of DNA and RNA and replication and regeneration.  Oh my goodness.  God gave me a body that would store fat so I could nurse my baby girl and keep her healthy with my own antibodies~but then when she didn't need that anymore I could lift weights, breakdown muscle, metabolize that extra fat, and then build muscle back up again?  Are you kidding me? 

 I learn more and more every day.  And, I become stronger and stronger every day.  I am forever in training...mind, body and spirit.  Messing up, asking forgiveness and trying again.  Learning more about the God who made me, learning about his love for me, and learning how best to serve Him.  It's never too late to start getting F.I.T. 

"Even now," declares the Lord, "return to me with all your heart, with fasting and weeping and mourning."  Rend your heart and not your garments.  Return to the Lord your God, for he is gracious and compassionate, slow to anger and abounding in love, and he relents from sending calamity."  Joel 2:12-13

What a Shame?

I had an interesting experience recently that I have been tossing around in my head...

An elderly lady who didn't know me nor Evie had introduced herself to us when we met her in a public setting.  She then looked at me and leaned in..."What's wrong with her eyes?" she asked me under her breath.

I said, "Oh, she's legally blind, but you can't really tell, can you?"  I smiled. 

The woman gave that type of scowl or pursed lips you see when someone eats a lemon.  "What a shame..." she said.

Instantly, that struck a chord with me...a chord of discontent.  (The first thing I wanted to say was, "Well, she might be blind, but she can still hear!!!)  I replied, "Well, don't let Evie know that, she's doesn't realize she's at a disadvantage.  She misses out on nothing in life, and is one of the happiest children you'd ever meet." 

The woman looked at me, a little stunned.  She said, "Well, good."  But, then the shadow fell over her face again.  "Just,"  she continued, "well, I guess they must have gotten to her eyes too late.  Not able to do anything for her?" 

I took a breath...this Debbie Downer was starting to grate on me.  "Actually she had 3 surgeries in her first year of life.  The glaucoma won in her left eye eventually, but her other eye is working hard for her.  She walks with a cane and is learning braille.  If you saw her on a playground, you'd never know she was blind." 

I had to get away from this conversation, I was about ready to ask the lady how she made it through life this long (she herself was walking with a cane to keep herself upright)~how can you make it that long if you believe any obstacle that falls in your path is a "shame?"

Here's the definition of Shame from dictionary.com

1. the painful feeling arising from the consciousness of something dishonorable, improper, ridiculous, etc., done by oneself or another: She was overcome with shame.

2. susceptibility to this feeling: to be without shame. 

3. disgrace; ignominy: His actions brought shame upon his parents. 

4. a fact or circumstance bringing disgrace or regret: The bankruptcy of the business was a shame. It was a shame you couldn't come with us.

 

NONE, and I mean NONE of these definitions even remotely describes Evie's life, disposition, abilities, motives, or heart and soul.  Furthermore, none of God's creation is a "shame".  We are not mistakes.  We are not "whoopses" in God's art studio.  Each one of us was knit together in the womb by a God who created such intricacies as DNA, RNA, mitochondria, cytoplasm, and gamines; we still have NO idea how all of this replication and duplication comes to pass in such a way that any of us even makes it into this world as "normal." 

 

I don't mind when someone asks about her eyes, or her syndrome; how she manages, how WE manage...that's great!  Ask away!  Learn, understand, be inspired, be impressed, be blown away...but don't feel pity.  Don't take a 1 minute glimpse at us and think you know us at all.  I should have asked her if she wanted a run down of everywhere we went last summer.  I should have asked for her address so I could send her a Christmas card.  I should have ACTUALLY made the business cards that I always had thought about making with the mission of the IWSA on one side and the synopsis of WAGR on the other.  Instead, I took a breath and got out of there.  After all, we had too many fun things to do with the remainder of the day than to let that woman look upon us with pity and tsk, tsk about the shame of it all.

 

For I know the plans that I ^[a]have for you,’ declares the Lord, ‘plans for welfare and not for calamity to give you a future and a hope. Jeremiah 29:11