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Photo Courtesy of Serge Bertasius/freedigitalphotos.net

The grass withers, the flower fades, but the word of our God stands forever Isaiah 40:8 NASB

Ah, the holidays.  Have you ventured out into the malls yet?  Have you managed to get lost between the anchor stores in some random corner of the mall which may be lined with independent kiosks in December, but will hardly be traveled the rest of the year?

I once worked in the Mall of America; yet, here, I find myself all turned around in the Meadowood Mall which doesn't remotely compare to the MOA in size.  It's unfamiliar territory, as is most of Reno, but it is becoming home now that we've been here for six months.

Isn't our life's journey very much like a trip through the mall?  Some stores are intriguing and enjoyable, as are some stages in our life.  Some stores are crowded, crappy and overpriced...as are some stages of our life.  Some stores are downright overwhelming...um-hmmm...just like life.

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

Sweeping the Threshold

I’m filled with excitement.

Have you ever felt that way?  When you are just waiting for the next day to start so you can see what other connections are made, what other people God brings into your life, or what other opportunities He places before you?

Every day lately I have found connection after connection after connection, where one task I’m given directly prepares me for the next one; where each assignment strengthens my ability to complete the NEXT assignment.  

As I stand here, sweeping the threshold of a new adventure, I feel a path has been paved for me, so I have no fear or trepidation; just wonderment at how God takes me on my journeys through life, and always has much greater plans than I ever thought possible. 

Have you seen the connections God has made in your life?  Have you seen in hindsight how he has spared you heartache or failure by setting up a barrier that at one time you resented?

One of my favorite bands, the Newsboys, sing a song that keeps running through my head on a daily basis:  

God is Movin’

I've been oblivious and unaware
That there's a war raging on out there
Between the good, the bad
Every day's a battle
But something's in the air
I can feel it, I can feel it
God is movin', movin', movin'
Love is alive, we're wakin' up
I can feel it, I can feel it
Yeah, God is movin', movin', movin'

Can you feel it? 

God is moving. 

Written in response to www.sundayscribblings2.blogspot.com writing prompt: Sweeping the Threshold.

Prepared for a Purpose~How being the Parent of a Child with Rare Disease has Changed Me

Today is my 8th day blogging for WEGO Health's National Health Blog Post 30 day Challenge.  Our assignment today is to write about how we have changed since being diagnosed, or becoming a caregiver to someone diagnosed with a chronic health condition. I wrote an article for the International WAGR Syndrome Association's newsletter, WINGS, back in 2005 about what it felt like when Evie was diagnosed with WAGR; it's called When It Hurts Like Thunder.  That's what it felt like, the WAGR diagnosis was a loud rumbling thunder inside.  A raging storm from which we could not escape.  One cannot go through a storm like this without being transformed.

As painful and lonely and scary as this life can be, however; I feel as though my life has been a long hallway that I have walked down. There are thousands of doors lining the hallway, and I have been in every single one of the doors behind me, and I will have to go through all of the doors ahead of me at some point in time.  At the time of Evie's WAGR diagnosis, I was at a teeny-tiny door with zebra striped material covering it.  There was a fuchsia colored peep hole-but as with most peep holes, I couldn't look in from the hallway, so I didn't know what was inside.  I opened the door and carefully negotiated my way in.  To my greatest surprise, I found my Grandpa Turk sitting inside. He had died nearly two years prior; but there he was smoking his corncob pipe.  "Oh, geez, kid," he said, "What the heck happened here?"  "I don't know, Grandpa."  I replied in tears.  "Is this what it felt like when Joel was born?" 

Evie and Joel on Evie's 1st Christmas

My uncle Joel had been born with Down Syndrome, and that was in the era when people would often just put the baby in an institution.  But Grandpa Turk and Grandma Joan had denied the majority and taken their baby home.  Joel isn't much older than I am, and he's one of the brightest lights of our family.  My grandma and grandma, and mom and dad had ALL been extremely active in the development and strengthening of the ARC of St. Croix Valley in MN.  I grew up going to visit and playing with the "handicapped" (as we said in the 80's) children in the room at school where my mom was a teacher's aide.  We went to all the ARC dances and picnics.  Special Needs was just another part of our life; not a foreign idea.

"Well, Kid, this is it." Grandpa said.  "You have been prepared for this.  Weren't you Summa Cum Magna or something?"  "Grandpa, this isn't what I was taught to do in school!  I don't know how to be mom let alone to a baby with rare disease."  Grandpa chuckled, clutching the pipe tight between his teeth as he sat back in his lawn chair.  "We didn't know where to start either, Kid.  We just took him home and loved him."

"Okay, okay...yes...we can do this..." I assured myself aloud.  "I love you, Grandpa," I said as I prepared to leave through the tiny door.  I looked through the peep hole.  Out in the hallway I saw TONS of people!  My mom and dad, Jeff's mom and dad, my sister, Jeff's brother and my sister-in-law...cousins, aunts, uncles, grandparents, friends, teachers....they were all crammed into the hallway of my life.  I opened the door and crawled on my hands and knees through the door which seemed to be getting smaller by the minute. 

As I stood up I realized that this crowd of people was an awfully silent bunch!  There was not a sound to be heard...the hallway screamed with silence.  My stomach turned when I stood up; the hallway was empty.  Wait a minute!  I couldn't do this alone!!!  I turned to re-enter the safe zebra-room with Grandpa, but the door was now the size of a fairy door in a knobby old trunk of a tree.  I couldn't fit back into the past from which I came.  I could only go forward. 

I found Jeff and Evie when I entered the next door down.  We were suddenly being inducted into a Rare Disease Hall of Fame as coaches for team Evie, however the future was scary and uncertain.  Cancer?  Blindness? Developmental delays?  What was Evie's life going to look like?  What was our life going to look like?  I didn't know, and I couldn't control it anyway.  But, I did start to see what Grandpa had talked about.  I had been prepared. 

The strong, solid, ivy-covered door I had walked through to my quantitative studies in grad school had seemed futile as I never really utilized research and statistics in my work as a manager of a dental office, but my research skills certainly came in handy when reading through what little research there was on WAGR.

There had always been doors covered in pencils and blank paper which had led me into rooms for writing.  I had even started taking a "mail-in" writing course during my pregnancy with Evie.  I completed the course by changing direction and, rather than writing children's stories, I started writing about our experiences with WAGR Syndrome.  Indeed, the doors to my writing had finally flung wide open.  I was inspired, focused and driven; no longer searching for my niche.  I would write about WAGR, my faith, and the world around us. 

Several more doors through which I had walked were covered in question marks, and balances of justice.  I had studied Communication; argumentation and mediation, as an under-grad and graduate student.  Now, those skills that I studied and learned have been called into practice time and time again.  I had to file appeals to get county services for Evie after she had been denied.  I had to figure out how and when to tactfully ask our doctors to seek alternate answers for some of Evie's more tricky health anomalies.  I had to figure out how best to communicate with all of Evie's teachers and therapists, and my communication needed to be clear and consistent. 

I discovered that several of the doors I'd walked through; the ones covered in clouds, stars, and a full, magnificent moon, had led to my dreams which prepared me for certain experiences.  For example, I had dreamt during my pregnancy about coming home from the hospital with a baby girl.  In my dream, I sat down in a chair in our living room, cradling the baby in my arms.  I looked down at her and saw wispy-fine hair on her head, and realized that she was a toddler actually.  Now why would my baby come home from the hospital as a toddler, and why did she have little to no hair on her head as a toddler?  The answer came two years later.  We had come home from the surgery Evie had to remove her port-a-cath after chemotherapy for her cancer was complete.  When I sat down in the recliner, cradling Evie in my arms, I looked down at her and instantly grew faint.  This was not just deja vu; this was my dream coming true.  She didn't have hair because she had been through 18 weeks of chemo.  She was a toddler coming home from the hospital, not because she was a newborn, but because she had just undergone surgery.  My dreams during Evie's pregnancy had prepared me for events that would take place during her life. 

Most of the doors I had walked through in my past were covered in crosses, Bible verses and shepherd staffs.  Time and again I have turned to God in my most desperate hours.  When I would be made fun of for hanging out with the kids who had special needs, I turned to God.  When the kids at school told me the only reason I got good grades was because I didn't have any friends, I turned to God and he said that I would be rejected because of him.  When I needed rest from all the activities I joined in college, and was trying to balance my desire for good grades with the fact that I finally felt accepted by my peers; God called me to the pasture and laid me down for rest.  And now, whenever life grows confusing, uncertain, overwhelming and chaotic; God still comes to me as my shepherd and comforts me.

So, how has life changed, how have we changed since becoming the parents of a child who has WAGR?  We have become focused on our priorities, stronger in our faith, outspoken concerning justice for those with disabilities, and more forgiving of others as we know we have to rely on mercy for our many short-comings.  I know that we are here and experiencing these heart-breaking situations that come with Evie's rare disease, because God is breaking us down and building us back up.  There's a popular analogy out there concerning God as the blacksmith and us as his metals.  The blacksmith must hold the metal in the searing fire in order to purify it until it shines so perfectly that he can see his own reflection in it. 

Then I will purify them and put them to the test, just as gold and silver are purified and tested. They will pray in my name, and I will answer them. I will say, “You are my people,” and they will reply, “You, LORD, are our God
Zechariah 13:9

I would like to see less scary doors in my future, and I'd hope the hallway contains less pain; both physical and emotional.  But that is not my decision to make.  God knows my days; the number and contents of them-He knows Evie's as well.  I will continue to open the doors he places in front of me, knowing that even when the hallway is silent, he has surrounded me with angels that will strengthen me and keep me safe. 

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

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