Sunday, December 21, 2014

Seeing Beyond the Offense and Giving Grace

Evie praising at Lifest 2014
I was driving into the parking lot at a supermarket chain the other day and was cut off by someone coming from the other direction.  The driver was clearly speeding, which startled and offended me; I had Evie in the car with me, and did not appreciate the "near miss" which endangered my daughter.
My instinct was to fume...
But quite instantly I heard a voice inside me say, "How many people did you cut off?  How many times did you speed into a parking lot when you were picking up medications or running in for milk and you needed to get home as quickly as possible?" "Remember when you were working 10 hour days and then taking Evie to chemo appointments the other days?"

You see, reflecting back on when Evie had cancer, I'm certain that I stopped short, cut off, sped by, name it.  We'd let our sidewalk go un-shoveled.  I didn't return phone calls.  I can't recall if I even sent out Christmas cards.  I think a hurricane devastated a large portion of the southeastern coast, but I didn't care;  
our world had shrunk down to the size of a 15 month old baby girl with a port in her chest, and poison running through her body in hopes of killing a killer.
So, our few months between the fall of 2005 and the spring of 2006 when Evie was being treated for cancer taught me a lot about grace.  Clearly, we didn't have a neon sign on the top of our car that said, "Be kind, their baby has cancer."  "Please, let them through, they're on the way to the ER with a fever of 104."  "New Year's Eve and on the way back to clinic for a dose of antibiotics because complications with pneumonia!"
The fact of the matter is, you may be judging someone who is experiencing the worst period in his or her life.
Give Grace...

Give grace... by letting the heavily sighing woman behind you move ahead of you in line.  /She may have just worked an overnight shift and now be going home to give the kids a meal before she goes to her second job which barely pays for heat.

Give grace... by waving that person in pleasantly; the person who is trying to "cut in"on the traffic when he or she should have moved over a long time ago.  He or she may have been thinking about when the right time is to call hospice for their mom or dad, and never saw the sign that the lane was ending.

Give shoveling the neighbor's driveway and sidewalk even though they've never done that for you, and usually take too long to do their own.  They may not shovel in a timely fashion because their daughter has cancer, and they can hardly lay her down to sleep at night let alone during the day when she just got her weekly dose of chemo.  (Yes, our wonderful neighbors in Wisconsin often shoveled us out that long, cold winter...they blessed us by never asking for anything in return, and probably weren't sure if we knew it was them.)

Please, see beyond the offense, and give them have no idea what news they just received, what horror they just witnessed, what tragedy they are experiencing.

The gift of grace is rarer than the sharpest diamond, and more precious than the finest pearl. 
One size fits all and guaranteed to be just what that person needs.

Thursday, December 18, 2014

Leave the Negativity out of the Nativity ~ Guest Blogging Day

Photo Courtesy of Imagery Majestic/
Rejoice in the Lord always. I will say it again: Rejoice! Philippians 4:4 NIV

I'm so thankful that our pastor has been focused on JOY during this season of advent.  One thing I would hate to do is forget about Joy and let the hustle and bustle of Christmas suck the energy and life out of my soul the way that negativity and stress can often do.  In order to train my brain to think POSITIVELY, I have to look at what negative thoughts look like versus positive thoughts.

  • Negative Notion                                                               
"I can't believe I have MORE paperwork to fill out for my daughter to qualify for Medicaid.  This has been taking months, and now we have to wait longer???"

  • Joyful Juxtaposition
"Yes!  We are one step closer to getting the coverage we need.  AND, I was just able to call a care coordinator DIRECTLY; a REAL LIVE PERSON to schedule our home visit!"

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

Tuesday, December 16, 2014

Born This Christmas Day...

This is a Christmas of newness for us,
A Christmas of change...

Coffee in front of a fire,
With stuffed stockings hanging just above,
Facetime two and three time zones away.

A quiet morning among the mountains,
A game of Life and maybe Sorry,
And perhaps we'll get a nap!

Dinner with new friends,
Those we didn't know three short months ago,
But our faith has made us family.

A new home, a new school, and new jobs...
But this Christmas, one thing has not changed,
We celebrate the King who came to Save.

Written in response to Sunday Scribbilings 2 writing prompt Born This Christmas Day

Thursday, December 11, 2014

You Are Here...Guest Blogging Day

Photo Courtesy of Serge Bertasius/
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 are some stages of our life.  Some stores are downright like life.

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

Wednesday, December 10, 2014

Sometimes it's Not the Lions; It's the Flies~WAGR Wednesday

When you first learn that your child has WAGR Syndrome, there are a few things that stand out and cause fear deep within your core:

Your child's heightened risk of developing cancer (Wilms Tumor)
Your child's heightened risk of being blind
Your child's heightened risk of experiencing kidney failure (Focal Segmental Glomerulsclerosis)

But, sometimes, it's not necessarily these "big things" which cause the most heart-ache.  Sometimes it's the "little things" that can eat at you day after day. 

What makes me think of this is an article in the New Yorker from April of 2014 which reveals that a recent study found the most likely reason that zebras have stripes is to prevent biting disease-carrying flies from landing on them.
What about lions?  
Zebras, having each of them a unique pattern, size, distribution, and boldness of stripes, appear to have more stripes and a bolder pattern in the areas of the world where they would run the risk of being bit by flies.  According to biologist Tim Caro, "We found again and again that many stripes or intense striping is associated with areas that tend to have many biting flies over the course of the year."  (New Yorker, 4/2014)
This started to make sense to me as I thought about the "little things" that tend to take up a lot of time and create a lot of heart-ache as a parent of a child with WAGR.
Developemental Delays:  As our babies grow, become toddlers, become school aged; we start asking, "When should they be walking?  When should they be talking?  When should they be potty-trained?"  We have NO CLUE what developmental milestones our child will meet, or IF she will meet them at all.  I recall getting mailings every few weeks from the hospital where Evie was born in Madison.  They would say, "Your baby should be...." and it would list all the things she should be doing at that age.  What a horrible mailing to receive while I watched my child fall further and further behind her peers.  I began to just dump those mailings in the trash upon their arrival. bite.
Sensory Processing Disorder:  Head-banging, biting, hair pulling, hitting, screaming...Evie did all of these as she transitioned to her toddler years.  Where had she learned this from?  We felt helpless, and, at times, frightened by how we would live day to day with these kind of behavior issues.  I never wanted to go out, I never wanted to take her anywhere that would "throw her off."  Once I read "The Out of Sync Child," and started to realize that Evie's issues were sensory in nature, and not just a complete hatred of me, her mother; I started to look for ways to LIVE with SPD.  We got Evie into out-patient occupational therapy at a hospital in Madison and life became so much more enjoyable.  But, up until that point, I felt like I lived in a tremendously deep hole out of which I could not climb. bite.
Loss of Friends:  As much as people want to be "open to it" and want to say, "your child is no different," we have seen friendships fade after having Evie.  You start to realize that your "group of friends" got together without inviting you.  The reason?  "We know it's hard for you to get out."  "We understand that it's hard having a child with disabilities."  "We didn't want to pressure you."  No.  That's a nice reason which helps these people sleep at night.  It's actually that they don't know how to relate to us anymore.  They don't understand WAGR, or disabilities, or blindness, so they don't want to have us ALL get together, and have no idea how to answer their OWN kids' questions; so, to avoid the uncomfortable situation, they no longer invite you.   You really DO learn who your real friends are when you have a baby born with special needs. bite.
As was pointed out in the New Yorker article, "while a single bite from blood-eating flies extracts just a tiny droplet of blood, thousands of bites per day can add up to significant blood loss."
I can't reiterate that enough.  Our daily "fly bites" are Significant.
It's hard to sleep at night when you're wondering if your child is crying because she's in pain from a stomach flu, teething, cancer or pancreatitis.  It's hard to wake up and do your hair and put on make-up when you wonder if you'll just end up crying it all off because your daughter bit you and had a meltdown.  It's hard to pick up the phone and call your sister because, when your child hears your voice in "talking on the phone" tone, she comes into the room and immediately demands your attention by yelling and whining, and then proceeds to throw herself against the wall, bang her head on the floor, and bite her hands.  
It's just plain old hard.
So, while cancer seems to always get everyone's attention with WAGR, when our kids are diagnosed with Wilms Tumor and our world suddenly becomes filled with people who want to help, want to bring food, want to send you a gift card, want to watch your kid so you can do some laundry (don't get me wrong, we DO appreciate these things)...we could really use those people to surround us on a daily basis in between the meltdowns and specialists; to celebrate the first step at age 3 or the first time they used the potty at age 5.  We could really use the friends calling us to say, "I know you're busy, but I was hoping we could all take the kids to the park and have a picnic."  We could really use people who want to learn more, want to help support us, want to come with us to a WAGR Weekend so they can meet other families with WAGR, or want to read our newsletters so they can get a  better glimpse into our WAGR World.

The best fly repellent for us; the rarely understood, is love, compassion, and inclusion.

Monday, December 8, 2014

Freed from Greed~Guest Blogging Day

Photo Courtesy of Pri/
And he said to them, “Take care, and be on your guard against all covetousness, for one's life does not consist in the abundance of his possessions."  Luke 12:15 ESV
Ah, the holidays are here.  Radio waves broadcast Christmas music and we start to see the trees, lights and other variety of decorations adorning our surroundings.  This is a dangerous time of year for a girl like me.  It's a constant struggle for me to be in stores shopping for others while not giving in to my own desire for another new black sweater, or a cute infinity scarf. 

I'm a serious shop-a-holic.  Really, I heart starts to race, my blood pressure raises, and at times I have to actually walk away from the whole thing because I start to WANT everything.  

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

Thursday, December 4, 2014

Where is the Joy?~Guest Blogging Day

Photo Courtesy of Bulldogza/
I know, O LORD, that Your judgements are righteous, and that in faithfulness you have afflicted me.  O may Your loving kindness comfort me, According to Your word to Your servant.  May Your compassion come to me that I may live, For Your law is my delight.  Psalm 119: 75-77
Some years it feels impossible to find joy during the holiday season.  People are still sick, people are still dying, people are still losing their jobs and losing their homes.  WHAT is so magical about that?


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

Tuesday, December 2, 2014

I Have the Just Get Over Myself

Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart. Hebrews 12:1-3 NIV

This past Sunday at church, we explored Joy.  
What a great word, what a great emotion:  Joy.
But, how do we find joy?  These past few weeks I have had several "situations" that continued to crop up in my life which led me to have my typical nervous stomach.  They weren't even things that all directly involved me, but I still allowed them to create worry and stress in my life.

Where is God when I'm so worried?  Why isn't He working in these situations?  Why is He allowing them to continue?

Then, as we looked at the JOY that Paul speaks about in Philippians, I realized that my problem was that I wasn't humbling myself before God and turning these situations over to him.
 And being found in appearance as a man,
    he humbled himself
    by becoming obedient to death—
        even death on a cross! Philippians 2:8 NIV
I needed to get off my high horse and realize that I had NO control over these situations, and that I needed to give them all over to him.  I needed to be obedient.
 Easier said than done, right?
So, how was I going to get myself to accomplish the task of "giving it over?"  
I had to give myself over to prayer and fasting.
I had to deny myself one of my favorite things in the world; food.
Here's what I did:
I downloaded an app on my iPhone called "Prayer Prompter".  It was a free app, and I absolutely believe it was critical to my successful prayer-fasting day.  I had been concerned about trying to concentrate fully on prayer and figured, "what's the point of fasting if you aren't effectively praying?"  Then you're just not eating for a day.
The Prayer Prompter gave me a way to list the things I was praying for, add details, and then sort them into folders by topic.  What I loved the most, however, was the pre-filled scriptures along the top section of my iPhone screen.  They were parts of scripture sorted into folders based on topics.  "Obedience," "Adoration," "Supplication," were a few of the topics to explore and pray through using the scripture provided.  
The app even allowed me a chance to see how much TIME I spent praying! 
Here was the best thing about my day of prayer-fasting.  Even as I stood and sat in line at the Social Security Administration office for 2 1/2 hours waiting to take another step in securing secondary insurance for Evie, I felt no anxiety whatsoever.  I had been in prayer and in God's word throughout the morning, and found myself talking to all the different people around me who were joining me in the "waiting game." 
This is what I observed during my wait time:
I talked for a half hour with a woman who was a Navy vet with disabilities.  She was going to file again for disability as she still could not obtain a job due to her limited ability to get around.  She and I talked about the mountains, the wild horses, her health, Evie's health, her family in Louisiana, and my family in MN and WI.  I missed her company when we finally got into the building, as she had an appointment and was called back, so I settled in for an unknown length of time to wait for my number to be called.

I noticed how kind the security guards were. They had to keep directing the line of people waiting to get their number back toward a wall to keep a walkway clear.  The guards could have just been annoyed by their job; by the monotony of it, by the fact that for some reason, humans hate to stand in line along a wall.  But they weren't...they were asking people how their holiday was, asking the children if they were excited for Christmas, offering chairs for those who were having a hard time standing.  Would I have seen that had I been absorbed in myself, my to-do list which wasn't getting done, MY rights~MY kid's needs~MY understanding of what MY family is entitled to?

I watched the couple next to me who were playing with their toddler girl and trying to keep her quiet enough so she didn't wake her baby brother in his car seat.  Dad would tickle the girl and she would say, "No, Daddy!" and laugh, but then would say, "Do it again!"  She reminded of Evie.  What was that family there for?  Did they need money?  Was one of them sick?  Had there been a death in the family and they were there to secure some of the final papers that needed to be filed?  I didn't know, but DO know that I would have never found as much joy as I did in their presence had I been more concerned about MY space, and getting bumped as the little girl jumped around, and the lack of foot room with a baby carrier and diaper bag on the floor.

Two and a half hours in, my number was called. For weeks prior to this I had been fighting the fact that I needed to do didn't make sense.  We had gone through this process in WI, WHY did we need to go through it again?  WhyWhy isn't it easier for us?  Why?  I had visions prior to prayer-fasting of walking up to the window and sarcastically explaining why I was their and how stupid the system was, and what a waste of time this was. 

But, with this new mentality; humbling myself, lowering myself from a position of importance in my own eyes, denying myself "rights" to food and "me-time", I went to the window and explained that I needed a denial of SSI for my daughter in order to complete our application for medicaid.  I said, "Is that something we can do today, they've only given me until Friday to get it?"  She smiled and said, "I can get you that letter right now."  Within minutes I had the letter...the letter I had been fretting over for weeks, the letter that I was fighting to deem as "a waste of MY time." 

When I walked out of the office and into the warm December day, I had a smile on my face.  A woman who had been finishing her cigarette outside, who I know had been waiting there for an hour or more, looked at me and said, "Oh my goodness.  You're so pretty."

And that's how I know that I was successful in my prayer and fasting yesterday...not necessarily that I had any of my prayers answered (not that I know of yet)...but that she had clearly seen Jesus...
                                in little old me. 
Image found on Pintrest from Carleigh Rose


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