Whispers in the Dark

     In the recent months, I have not blogged, updated my facebook status, and only responded to emails when an answer was required.  Life has had death grip on my very soul and my physical body was beyond exhaustion.  The old adage of “get up, dress up and show up” has basically been my life motto lately.  Dealing with a chronically ill child, the never ending stress at work and juggling a budget to continually pay medical bills took a harsh toll on me.  I am the fixer, the wife, the mom, the house cleaner, the financial wizard, the finder of lost things….and I’m the one who cries in the car when no one else is watching.  Sometimes, I’d like to slap the person who says trials make you stronger.  I don’t feel strong, I feel like a whiny child who desperately needs a nap. There have been days so dark and so sad that I seriously wondered if I’d get to the other side. My prayers, my poor pitiful prayers, were reduced to groans only God can understand. I tried to pray, I really did, but no words would form on my lips or in my frazzled brain.  My intentions were always so good. I would get up so early the sun was still sleeping and I would sit in the darkness with my coffee cup, journal and Bible.  The only thing accomplished was drinking every last drop of my coffee.  My journal has remained empty, and my Bible worn from reading the same highlighted verses over and over.  Devotional books are in stacks on the side table, pens are still in the cup waiting for the heartfelt motivation to come.

        Numerous tough decisions have had to be made for our son.  These are decisions we never dreamed we’d be facing, but it is our reality now.  Years from now, we will look back on this difficult time in our lives and will see the handprint of God.  Now, I’m just hanging on for all it’s worth.  There are no easy answers.  I totally get it that others really don’t understand the journey of a long-term illness, especially an illness so rare that no one has ever heard of it. Still, there are days, you just want someone to wrap their arms around and tell you over and over: “It’s going to be OK”.  No, his illness is not life-threatening, but it is certainly life-altering. 

     Still, through the tears, the moments of doubt, the endless medical appointments, and our days that revolve around how he feels there is hope.  Hope glimmers when he shows his dry wit and makes us all laugh out loud.  Hope hovers over us as he eats a meal and then still wants more.  Hope sustains us when he has a “good” day. Hope envelopes me even when I have no words left to pray.  Hope is ever present, even when I choose not to see it, it is there peeking out of every crevice of this unknown journey. 

      It’s really not about me or even Daniel.  It’s all about God in His mercy showering His gifts daily in my life.  It’s my responsibility to seek Him and see His goodness.  It really doesn’t matter if others think I’m weak or a shoddy representation of a believer because I have the courage to say that life is hard.  Prayers are not a performance, they are my communication with my Savior, and sometimes, the Holy Spirit intervenes to speak for me.  God has us covered, even when we can’t pray or have no words left. His whispers in the dark push me onward, one foot in front of the other, until this journey is complete and His glory is shown.

   

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My Wish for You

         To my dearest Rebekah,

     As you graduate from Longwood University I impart to you some words of wisdom, some prayers and some insights as you enter into the “real” world of a full-time job of teaching elementary students and establishing yourself as a young woman.  My precious girl, I wish for you:

  • discernment of when to nurture a student and when to make them step up to the plate and produce their very best
  • a sense of gratitude for all of life’s blessings, even when they don’t seem like blessings
  • the energy it takes to do one more task even though you’re exhausted
  • an endless drive to produce excellence in all you do
  • time to be with your Creator and Savior, and not allow the “busyness” of life to intrude on this precious time
  • hugs to wrap around you when you begin to doubt your career choice, your decisions or just life in general
  • your heart to be sensitive to children’s needs even when they are racking your last nerve
  • your eyes to see beyond an academic curriculum and imagine who your students will really be one day

You, my precious one, are the one who swore she would never be a teacher…and now look what God has done.  He has molded, reshaped, and divinely designed you to be the one who will touch young lives eternally. For when those children look at you, hungry for attention, eager to learn and demanding every bit of your devotion…they will see Jesus.  I am humbled by His greatness and forever grateful for His gift of you to me.  I love you forever and always.

 

A Million to One

       In our constant search to help our teenage son feel better and to help us cope as his parents I do significant research on his rare illness.  All the research leads to facts of no known cure, no known treatment and recently, a statistic that literally blew me away.  His disease of Klein Levin Syndrome is so rare it is literally in the million to one chances of someone getting this syndrome.  A million to one…I have a better chance of winning the local lottery than it would be for our family to be affected by this illness.  It would be oh so easy to fall into the poor pitiful me trap of “Why does it have to be our son?” to be the chosen one in a million.  I don’t have the answers and I’ve cried enough tears to fill a bucket, but the facts don’t change.  For some reason, beyond our control, our brilliant young son has lost most of his teenage years to this mysterious illness. 

     The fact is our world revolves around his health and savoring every “good day”  that comes along.  On the days and nights where he sleeps and sleeps we carry on our normal routine as best we can.  I’ve learned to go to work without crying now.  I’ve accepted the full force of grief and go with it now against of fighting against it.  It took me a long time to realize I was grieving; for awhile there I honestly thought I was losing my mind.  I grieve for what Daniel could be and what this illness has taken away from him.  He is no longer able to run, is unable to get his driver’s license and sleeps away his high school years with no extra involvement in any activities.  I grieve for his potential that has been erased by this rare syndrome.  Forgive my parent “bragging rights” but he easily could have be the valedictorian of his class, but instead his whole high school education and college plans are completely scrapped for now. We should be visiting colleges and renting a tux for the prom, instead we are fumbling through day by day not knowing answers and so wanting him to feel better.

     A million to one, and we are the ones coping with a syndrome that has uprooted our entire lives. A million to one and I am thankful it is not fatal, and he will eventually get better.  No, this is isn’t what we planned, it’s a road we didn’t even know existed.  The fact remains we have to deal with this whether we want to or not.  We have to deal with the naysayers who mean well, but have no clue what it’s like to cope with a chronic illness.  We also have to deal with the ones who say to us, “If it was my son, I would….”  Well, he’s not your son and we’re doing the very best we can.  Yes, we’ve made mistakes along the way, but that comes from pure desperation of wanting your child to be well. 

     We stand firmly in our faith, knowing, believing and confirming that God is in total control.  He will carry us through this time and will provide for every need.  This is not blind faith or feel good optimism, this is the rubber meets the road faith when you’re tested to your limits, pray in silence and cling to every single promise of God.  No, it’s not easy, it is not joyful, but He is good and He will come through even when I don’t think He will.  He is God, He is Sovereign and He gets to choose the million to one.  I choose to humbly bow before Him, praise Him even when I don’t “feel” like it.  He is using our family as His million to one and I trust Him.  No, I don’t understand it all and it’s one of the most heart wrenching journeys I’ve ever experienced, but I know that I know He is good.  Jesus loves me, for the Bible tells me so.

 

It’s My Honor

It’s My Honor

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          In everyone’s life there are different relationships. There are your parents, your siblings, your extended relatives, your spouse and your own children. You love each differently, but each relationship is a mixture of God’s grace, love and compassion.  Sometimes, in a lifetime on earth one is blessed to have a very best friend.  I have had the incredible privilege to have Debbie Meadows as my very best friend.

     Two peas in a pod, salt and pepper, socks and shoes, you name the analogy of being together and that’s us.  Two redheads from the South, fire and brimstone Baptist roots, bargain finding buddies, and teachers with the perfect balance of love, nurturing, and the look that says, “I told you to sit down and be quiet!”   We taught so long together that we could finish each other’s sentences and could discipline a disobedient child with a look from across the room.  I was the planner, the organizer and Debbie was the spontaneous one.  There were several days when she would just throw up her hands, and say “ To hell with the planbook, we’re gonna have some fun today.”  And with that statement, she would pull out the Rubbermaid blue tub so crammed with craft supplies it would make a Ben & Franklin employee blush with embarrassment. 

       Debbie made life fun and she taught me to laugh and to trust God completely when adversity kept my life stuck in the spin cycle. We could go in a store, look, piddle around, admire everything and never buy a thing.  Our husbands never understood how we could just piddle around and never spend a dime.  We went to every local southern gospel concert around and even ventured to VA Beach for a Christian Christmas concert.   Yes, we were the bold ones, lifting our hands high in worship, singing, and dancing to the sweet music that filled our parched souls.

Over our school lunches of pimento cheese and crackers or peanut butter and jelly sandwiches, we contemplated life, cried over our kids, and swapped Paula Deen recipes.  There aren’t enough words to describe a very best friend, this precious woman always thought of others first, never hesitated to help others and would cuss you out in a heartbeat if you did her wrong. 

Debbie loved to be outside watching the birds in her backyard. Her early morning devotion time was spent with coffee, her old robe and sitting on her deck praying and enjoying God’s creation.  She loved camping and being around the water.  Cooking for her family brought her immense joy. Only Duke’s mayonnaise would be in her potato salad! Some women may like the mall or Stonypoint Fashion Park, but Debbie’s favorite store was the dollar store!  Give her ten dollars to go in there and she was like a kid at Christmas time! 

Holidays were always fun for her, decorating, cooking and giving gifts to others.  She never missed a bargain at Kohls , but it was usually a gift for someone else and not herself.   She loved Christmas and all its sparkle, glitter and fun, but she really loved Halloween.  Bags and bags of candy were purchased just so she could see the sweet faces of children and guess who they were in their costumes. 

The emotional and physical roller coaster of liver disease sucked away her precious life way too soon.  Constant ups and downs of dealing with this unpredictable disease took its toll on her and her family.  Because she always bounced back, I spiraled into denial of how sick she really was and missed opportunities to be with her.  She never judged me or put me on a guilt trip; she was always gracious and never missed an opportunity to tell me how much she loved me. Southern sassiness and her straightforward attitude kept her a step beyond everyone else.  She was my very best friend and beloved “Aunt Debbie” to my children.  To her students, she was “Mrs. Meadows” and they’ll always remember her as the teacher they had fun with and were loved beyond measure.

How in the world do you say good-bye to your best friend? I can’t and I won’t, at least not right now. My precious memories of her will sustain me until I see her again…she’ll be the redhead dancing with Jesus.  I love you my sweet friend, it’s been one of life’s greatest honors to have you as my very best friend.

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Lessons from a Tough Year

     Right before Christmas I had to request some medical records from Johns Hopkins for Daniel to be sent to a new neurologist.  We’ve been to so many doctors and specialists in the past year I was thinking that his time of service was this past spring. Then, I was informed by the receptionist that his last appointment at Johns Hopkins was January 11th.  My first reaction was, “Really? It’s really been a whole year and we’re still at square one with no positive treatment plan?”  The definite date sort of temporarily floored me and made me realize that this whole year has been a blur for our family.

      Adversity brings out the best in us and the worst in us.  There are some life lessons learned the hard way, and I’ve definitely discovered a tougher side of me that I didn’t even realize existed until this year.  Intimidation is no longer a friend of mine. One hard-knock lesson I learned very quickly into this medical journey is  just because someone has “Dr.” as their title doesn’t mean they know everything or even begin to have all the answers.  Out of fifteen medical specialists we have seen in the past two years, only ONE has been able to correctly diagnose, communicate and realistically work with us.  I’m not making a blanket negative statement about doctors, but it has certainly been an eye-opening experience from a highly educated field we tend to blindly trust.

     Crying can be a healthy outlet and I’ve certainly cried a bucket this past year. I’ve cried out of pure frustration, out of overwhelming exhaustion and the pitiful helplessness a parent feels when their child is sick and there is nothing to do to make him feel better.    There have been some days that getting dressed and showing up to work on time was all I could barely muster. I’ve learned to say “NO” to unnecessary commitments, obligations and even time with dear friends so I could spend more time with my family. The people-pleaser mode in me has taken a long hike and will probably never return.  My only priority is pleasing God and my family, period.

       God doesn’t always speak loudly, or even whisper softly. Sometimes in the middle of a trial that knocks the breath out of you, He is completely and utterly silent.  Have I passed this test of faith?  Am I doing what’s right?  Are my words and actions pleasing to Him? Sometimes I just don’t know, but I do know I trust like I’ve never trusted before. Even in the darkest days of Daniel being ill, no answers, no money, no hope in sight, I trust, I believe, and I depend on others to intercede when I just can’t even process what the next few minutes will bring. 

     I no longer put on a fake smile and say, “I’m fine” when I’m not.  An apology is given when I realize I’ve forgotten something because of the stress interfering with my daily life.  Any extras in my life are gone and I only work, and take care of my family right now. Not exactly a fun place to be, but it’s where I need to be right now and I don’t regret one moment of taking care of my son and family.  Life is not all about “fun”, it’s about living out my faith when all the chips are down and the light in the tunnel has been moved way down the tracks. It’s not that I don’t enjoy life, despite trials, I am very content.  This time in my life is completely centered on my family.  Extra-curricular activities will come later and will be enjoyed at another time.

     Assertiveness from an emotional mom can be like balancing on a tightrope. One wrong step and we all fall down.    If I had a dollar for every minute I’ve spent on the phone trying to get through to a doctor or the time I’ve spent in waiting rooms I could retire right now and never look back.  I’ve learned to document everything and I do mean everything.  A fax machine is no longer a technology monster for me to tackle.  Being my child’s advocate has taken me out of my comfort zone and has put me in places I never thought I’d be, but when pushed into a corner I’ve come out fighting with both fists swinging.

      Lessons learned: it’s OK to cry, it’s OK to ask for help and it’s OK to take care of your family even when others really don’t understand the nightmare of living with a chronically ill child.  Cherish and be thankful for the “good” days, the “good” moments and try not to be hard on yourself when it all crashes around you.  I don’t owe anyone an explanation if I cry tears of gratitude when he feels well enough to open presents on Christmas morning.  Keep putting one foot in front of the other, God hasn’t left me and He never will.  No overwhelming theology, just the simplicity of the fact God has it covered and He will take care of us.

 

 

 

    

Freeze-Frame

     Yesterday was one of those rare days you just want to freeze-frame in your memory to remember and to savor.  I am not a Black Friday shopper, but I did indulge in the sales at Bass Pro Shop on the day before Thanksgiving.  It’s one of our children’s favorite stores, so it was like one stop shopping complete with a gift card in hand and accumulated points for money off of our final bill.  Originally, it was going to be just Rebekah and me doing the shopping because Clif had a haircut appointment and Daniel has just felt flat-out awful lately.  To our surprise, Daniel decided at the last minute he wanted to go with us.  His decision to ride with us was a miracle in itself, since he’s been bedridden for all of October and most of November as well.

      One wrong turn and 45 minutes later, but we finally got to the packed Bass Pro parking lot.  The parking lot was full so I dropped them off at the door and went on the hunt to find a parking space.  Finally, I made it inside the store and saw them smiling and waiting for me. I know that sounds really sappy, but when I see my son smiling and actually enjoying being somewhere besides his bed, it takes every bit of self-control I have not to burst out into grateful tears.  Maybe it was because it was the beginning of the holiday season, or maybe everyone was just in a great mood, but the customer service was superb and hospitable.  Rebekah took him to another part of the store so I could find a possible Christmas gift for him.  She sent me texts in the store of things he was looking at and trying on in the store.  Makes you wonder how we survived without cell phones!

      After about 30 minutes in the store, we caught up with each other and just piddled around looking at everything together.  Yes, I took my coat and covered up everything in the cart so they couldn’t see anything!  Right before I was going to check out, Daniel stated he was really tired and needed to go sit down.  Rebekah took him to the car while I stood in line to check-out.  In line, I was silently praising God, “Thank you LORD, I had him for one whole hour today. I praise YOU for this glorious blessing.” 

     As we were leaving the parking lot, in the rain and sleet, Daniel stated that he would really like to the Green Top Store since we were so close.  I hadn’t planned on stopping there, but if he wanted to go, then we would go.  Off we went to another packed parking lot!  In the store, I headed toward the cooking products and they went to check out the ammo and the newest guns in the cases.  It was just so heartwarming to see their two heads together bent down and looking together.  After they had their fill of looking around, we headed back to the car to head to my sister’s house to visit for a little while.  She only lives a few minutes from Bass Pro shop.

    At her house. I watched Daniel engage in conversation with everyone, play with their dogs and heard him laugh along with all of us. Simple, ordinary tasks we take for granted on a daily basis, and I just want to freeze-frame every single moment of being ordinary.  His illness has taught me to be thankful for ordinary moments that are so often overlooked. Often, parents don’t even think about the blessing of their child waking up in the morning, getting dressed and going about their day.  Now, I cling to these moments when we briefly have our son back in an ordinary day. 

    Freeze-frame the moment, remember the goodness, cling to the promise that God WILL turn all to His good.  I’m waiting and praising in the hallway until the windows and doors open like floodgates pouring out HIS love and goodness.

    

God’s Plans

     In Jeremiah 29:11 God promises us He has plans for us, plans to prosper us, not to harm us and for our future.  This verse is a favorite, and has been put in frames in the house, prayed over my children and whispered silently for reassurance.  God’s plans…far too creative and mighty for me to even begin to understand, but also a wonder to my heavy soul tonight.  Tears are blurring any reasoning I may have at the moment, and I am clinging to His ways, His thoughts and ultimately, His plans.    
Within a thirty minute time span today, our son Daniel’s education plan was radically changed.  Unfortunately, he has not responded positively or consistently to any medication attempted to keep him awake and alert while he battles the throes of Klein-Levin Syndrome. We have hoped, we have desperately prayed, but God has chosen to be silent in this time in our lives and the medical journey with sweet seventeen year old Daniel rages on and on.  Daniel, a bright child, was chosen as one of 52 county students out of hundreds of applicants to be in the Governor’s Academy for Engineering Studies.  The first two grading periods, he thrived and performed well, then this maddening syndrome entered his life and all spiraled downward at an accelerating speed.  Now, because of medical issues way beyond his control, he will no longer be in the engineering program and will probably have to be on homebound instruction if the county can secure a certified teacher for him. Not exactly the plans we had in mind for him, not what we envisioned for our youngest son and certainly not at all what we wanted for him.  I wish I could be a perfect Christian woman, totally submit and feel peace in God’s promises and His presence.  Sorry to disappoint those reading this right now, but all I want to do is scream, “WHY?” Why do his dreams have to be shattered? Why do we have to constantly have to battle with the insurance company for his medications?  Why won’t the medications WORK?  Why can’t he have a normal teen-age high school life?  Oh yes…it’s a believer having a hissy fit!    
Realistically and logically, I know it will eventually work out, but at this moment I just want to smack the next person who says to me,”He’ll be fine, he’s bright, he’s smart, he’s a great kid.” I know the comments are well-intended, but he’s not your child. We don’t need pie in sky positive comments, we need a hug, we need prayers and we need time with our family to heal and to appreciate one another.
God really is good and I know He’ll show His glory. I’m also glad He uses ordinary people to do His work. There’s nothing pretty about a fifty-something believer having a hissy fit, but somehow, someway, God will use this broken vessel for His kingdom. He does have plans for us and I will keep believing even though it hurts right now. God is in control.

Refinement

        I am being refined.  God is squeezing, pounding, pulling and molding me and I am squirming away like a child scared of discipline.  My trust level is being stretched to its limits and my faith is clinging to God’s promises.   God is using this time in my life of one trial after another to change me, to transform me and to prepare me for something better.  He is in charge and I need to let go and allow Him to be totally sovereign. 

      Lord Jesus, pry my fingers away from routine security and allow me to hold your mighty hand.  May my steps follow you and not wander off on a path of my own.  Take this wrenched mother’s heart and open my eyes me to see healing for my son.  Give me your wisdom to make the best decisions possible for him to finish high school.  I can’t and won’t do this alone, dear LORD, I so desperately need You. 

     Remove any negative thoughts that enter in my head and replace them with your memorized Word.  Squelch any self-critical thoughts and destroy my tendency to compare my trials and situation to others around me.  My confidence comes from you alone and in you I am complete.  Surround me in Your Word, and Your glorious creation to prevent me from sinking into darkness.

    Lord, I submit, I surrender to your holy refining process.  Refine me to the perfection you expect in my life.  Transform me and prepare me for the next season in my life. You know me better than I know myself.  You alone know what is best for me.  Illuminate your waysl so I may obediently walk in your path.  I am being refined as silver in the scorching fires and I submit.

       

I Am Called

        This morning I read my devotional in Jesus Today by Sarah Young and the words jumped off the page and settled in my soul.  “I call you to lead the life that I have assigned to you and to be content.”  Lately, I have to honestly admit that my life has been anything but content.  Stress at school, with one more task always being added to my already overflowing plate totally unnerves me. Always juggling the checkbook and taking yet another hit with another unexpected payroll deduction leaves me even more frustrated.  Dealing with the constant strain of Daniel’s chronic illness has taken a heavy toll on our family.  So, to hear Jesus tell me in this devotional that this is the life He has assigned to me and to be content totally riveted my attitude.

     I am called to be a mother.  It was so easy when they were babies.  Yes, I was sleep deprived, but I could kiss them anytime I wanted to and snuggle up close to listen to them breathe.  Coordinated outfits adorned those sweet pudgy little bodies and diapers were in the house, in the car, in my purse and in the “carry everything but the kitchen sink” diaper bag.  As the babies grew into beautiful children I was the blessed called one to teach them right from wrong, instill God’s Word into their hearts, and kiss their scraped knees.  Middle school hormones rocked my world, but we all survived and didn’t choke each other in the process of growing up, letting go, and becoming respectful young adults.  Now, my children are adults and I am the called one to be their mom, their support, and their encourager. 

     I am called to be a teacher.  My profession is not my life, but it is a calling.  In teaching, it’s not about a test score, or planning a lesson.  It’s the delicate balance of knowing when to push a child a little further or just to step back and encourage the effort shown.  Teaching special needs children for all these years has been not just a job, but a ministry.  Academics are only a small portion of teaching; life skills to build character have to be intertwined delicately and deliberately. I am called to mold their precious lives into a love of learning and a love for life itself.

     I am called to be a believer.  Being a believer means I don’t wear rose-colored glasses and pretend everything is fine just because I love Jesus.  Perhaps, this is the toughest calling of all.  It’s being real when life circumstances have sucked the life out of you and there’s no energy left.  Being a believer means you hang on, keep working, and keep trusting when it’s so dark you can’t see your hand in front of your face.  Waiting for a healing, waiting for a miracle, waiting for a break-through is all part of the divine calling. 

    I am called to this life I lead.  Pay the bills, buy the groceries, clean the house, walk the dogs and I will be content.  Love my children, teach my students, keep praying for healing for Daniel and I will be content.  Hug my friends, cook in my kitchen, love my husband more now than I ever have and I will be content.  Laugh a lot, read my Bible, listen to my “Jesus music” and I will be content.  I am called to this life I lead and I will be content forevermore.

Nothingness

     No TV, no computer access and limited phone access were my privileged gifts this past weekend.  My husband and I were able to get away for a weekend for the first time in several years all by ourselves.  Through the kindness and generosity of a dear friend, we were able to use a charming river house near the Chesapeake Bay for two blissful days of pure relaxation.  Just being able to look out the windows and see tranquil water and sea birds catching fish instantly changes a mind frame from stress and exhaustion to rest and reassurance.

      I’m not an avid movie watcher, but there is one line in “Eat, Pray, Love” that particularly appealed to me.  “You Americans need to learn the art of nothingness.”  In our rushed, busy everyday life, doing nothing is almost looked upon as being sinful or certainly evokes guilt for not doing something.  In reality, in “busyness” satan has us right where he wants us…too busy to pray, too occupied to spend time with our Savior, too distracted to focus our eyes on the Author of our faith, too frustrated to work out what’s really going on in our lives.  A welcomed weekend away from all that clamors around me forced me to unwind and to take advantage of the simplistic blissfulness of rest. 

     Sitting in a chair on the pier with the sun shining, breeze blowing and water rippling enabled me to slow down long enough to just breathe in God’s goodness.  Watching an egret catch and swallow a fish whole caught me by surprise.  Having a local dog and cat join me on the pier just added more to the “doing nothing” phase.  Listening to the fish jump in the water all around me brought pure delight.  I felt like I was just melting into the chair when my body finally gave in and allowed itself to really relax.

     In the afternoon quietness as I continued to gaze upon the water,  I was gently reminded that Jesus walked upon the water and willingly held out His hands to Peter.   Of all the disciples, I probably relate to Peter the most, trying so hard to be faithful but moments of doubt creep in and slam me before I even realize what’s happened.  In those quiet moments, Jesus reassured me He does walk on the water, and if He can walk on water He can certainly take care of me.

      Two days of reading, sleeping and cooking when I wanted to and not by a schedule was a blessing beyond what words can convey.  As we headed home, I felt rested, reassured and restored. Circumstances of life did not change while we were gone, and we came home to Daniel still being in one of his “bad” cycles.  Money did not miraculously show up in our checkbook, and the house did not auto-clean itself.  Things around us have not changed, but my attitude and my trust level has changed.  It took literally getting away from all of it to change my perspective.  The art of “nothingness” is a gift to be cherished and savored.