In This World You Will Have Migraines ~ Guest Blogging Day

I have told you these things, so that in me you may have peace.  In this world you will have trouble.  But take heart!  I have overcome the world.  John 16:33 NIV

It’s tough being a parent.  To be a parent with a chronic illness makes circumstances even harder.  I have been dealing with debilitating migraine headaches.  It’s something I have dealt with for 20 years; but they come in cycles, and when I’m in a cycle, I have them daily for a long period of time. 

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Audience of One ~ Guest Blogging Day

Indeed, I count everything as loss because of the surpassing worth of knowing Christ Jesus my Lord.  For his sake I have suffered the loss of all things and count them as rubbish, in order that I may gain Christ...Philippians 3:8

God often reminds me that the world is NOT my primary audience. I am not here to become popular, famous, or highly acclaimed.  I am here to carry out his will, whatever that may be.  He most recently is reminding me of this with my current condition; daily migraines. 

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When it's Raining Shoes-WAGR Wednesday

When you first hear that your child has WAGR Syndrome, life takes a turn.  How big of a turn, how fast of a turn; that all varies, but you know that life will never be the same, and you immediately feel set apart from many of your friends who have "healthy" kids. And, the thing with WAGR is that typically your DOCTORS won't even know what to tell you.  Some may try to tell you that it's a wait-and-see; but others will say, "let's stay on top of it all."  In our case, we had doctors who wanted to learn as much as they could, and who wanted to stay ahead of anything that might come our way.

Regardless of how great a support system you may have; doctors, therapists, friends, and family...having a child with a rare disease; a disease that doesn't have enough "numbers" to really get statistical data from, a disease that rarely is found in text books other than a paragraph or two about all the "stuff" that comes with it...having a child with such a syndrome means always waiting for the other shoe to drop.  The greatest of all fears is the fear of the unknown.  Let's face it; WAGR Syndrome is an unknown.

I spent the first 6-10 months of Evie's life worrying about the unknown.  Would she exhibit head banging, behaviors typical of autism?  Would she have cancer, kidney failure, and developmental delays.  How bad would her glaucoma get?  How often would I have to miss work because she had pneumonia?  Would she have friends?  Would she be kicked out of places because of bad behavior?  If there was ANYTHING to wonder and worry about, I could find it.  

I wasn't just waiting for the other shoe to drop, I was waiting for a torrential downpour of shoes.

A few things helped me.  First, my faith; then the philosophy of a good recovery program; and third is time and experience.

First of all, I have a strong Christian faith.  I believe that we are all sinners in need of a Savior and here on earth for a short time compared to our eternal life in Heaven.  I believe that I'm here to be broken down and built back up again.  I believe that God can bring beauty out of pain.  I believe that, as Jesus promised, in our weakness, God is strong, and that the poor in spirit shall inherit the kingdom of Heaven.  Not EVERYONE believes this; but it's MY foundation, and it's the primary reason I can smile every day and know for certain that "this too shall pass."

The second way I learned to deal with the fear of the unknown is through the 12-step philosophy of "one day at a time."  I can't CHANGE or CONTROL what will happen to Evie.  I can educate myself on probability, and I can figure out how I will react, but I can't actually control what could happen.  It's like a tornado warning.  The possibility of a tornado is high if certain conditions are in place; so they issue a warning.  The warning doesn't mean the tornado will hit your home; but it means you are at a great risk for it.  WAGR doesn't mean your child WILL have cancer; WILL have glaucoma; WILL have kidney failure or developmental delays.  But knowing that your child has WAGR tells you that your child is at a greater risk for these things and you need to be alert and aware.

The third way that I have learned to deal with the fear of the unknown is through experience.  Having raised a child with WAGR for nearly 10 years now, I have enough "experience" to know how to respond in certain situations.  Hmmm...Evie's leg looked funky when we took her band-aid off from her cardiac

catheterization.  Well, I know she has a tendency to react to certain adhesives in band-aids...so, it could be cellulitis, but it could also be a skin reaction.  Rather than running to urgent care (which would have been my response three years ago), I decided to wait a day and see.  The next day it looked better!  The day after that, even better!  So, my experiences have given me the knowledge I need to keep calm and stay "ahead" of the fear. 

Another way that "experience" has helped me is in seeing all of the ways that we have been blessed; and I use those blessings to fight my fear.  It's true; scary thoughts and happy thoughts cannot share my brain at the same time.  If I fill my mind with the happy thoughts; the blessings we have experienced, then I don't have room for the fear.  When I start to panic about an ultra sound I start to think about the variety of blessings we had showered over us when Evie had cancer; people bringing food, sending cards, giving us gas cards, offering vacation time to me so I could take off from work at times.  When I look at all those circumstances, I realize, I have nothing to fear. 

The best advice I can give to knew parents who I meet with children with WAGR is to enjoy every day and not to worry so much about the future.  I wish that I would have realized how wonderful our life would be.  I remember the relief I felt when I first got an e-mail back from the leaders of the IWSA~Kelly T. wrote me and said, "My daughter Caroline is 23 years old..." and I breathed for the first time.  Twenty-three years!!!  I didn't know if that would be possible.

Possible?  What's possible?  The sky's the limit.  Literally.  When we are para-sailing with Evie, it's hard to believe that I once thought we'd never be able to go outside again.  And there we are, para-sailing.  

I love shoes; I mean I am a shoe fanatic.  But living life just waiting for the next one to drop didn't suit me at all.  Now, I live one day at a time, and I keep my shoes on my feet.

What Am I Asking of God? Guest Blogging Day

The lyrics for the song Oceans by Hillsong United really hit me this weekend and I thought about how often we ask questions like:  Just how much does God think I can handle?  Well, if we're asking him to take us deeper than our feet could wander...we better be ready for his response.
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A Bowl of Flowers

Image Courtesy of Praisaeng/freedigitalphotos.net

Packing memories

Packing dreams

Packing fears I'd rather leave behind

 

Packing my clothes

Packing my wares

Packing the dust I'd rather leave behind

 

Packing the photos

Packing the books

Packing the things I hoard here on earth

 

This bowl of flowers

Once held my hopes

But they have been packed

In a box that's closed

 

Sealed tight with tape

Marked

         "fragile"

                       "don't break"

 

Moth and rust won't gobble hopes up

Although the flowers will wither and die

My truest treasure is stored up on high.

 

Written in response to Sunday Scribblings 2 Prompt ~ A Bowl Full of Flowers

 

Favorite Fridays~Our Journey through Oz with UW Hospitals, Clinics, andthe American Family Children's Hospital

Ironic, isn't it, that the place I wanted to flee from so desperately this past Tuesday is the place that I write about today as one of my favorite things that I'll miss about Madison when we move?  But it is...in the Wizard of Oz, Dorothy wanted to get home from Oz too, but she made some amazing friends there, learned a lot about herself, and did some MAJOR growing up.

When our house first landed in Oz, it was because Evie was diagnosed with WAGR...and the first friend we made was Glinda and the Munchkins...all the doctors, nurses, and staff at our own little UW clinic here in town have been amazing.  Following up on ear infections, UTIs, and wanting to ensure that, not just Evie, was comfortable, but also Jeff and I.  We have been blessed with doctors who want to learn, and want to be a part of this journey of discovery with us.

So, they showed us the yellow brick road...a path toward satisfaction in this life...a path of hope, with a promise of a future.

We met our "Eye Team" at Dr. S's office.  I was still a frightened new mom, with a rare syndrome clogging up my brain.  I just knew I wanted to get back to Kansas...to that innocence BEFORE WAGR.  

We not only took our first scary steps with Dr. S~ countless exams under anesthesia when Evie was just a few weeks old...surgeries beginning around 3 months; but he taught us how to "think" in those early days and encouraged us to keep our positive outlook on things to come.

We went to the Waisman Center next to meet with a geneticist.  For some reason, being at the Waisman Center, and seeing all the services they had to offer families made me feel better.  I never felt like I was stuck in that place between wanting to accept the diagnosis and wanting to just be "normal".  

At the Waisman Center, being DIFFERENT was being NORMAL.

Dr. W made lots of recommendations, accepted the advice of the International WAGR Syndrome Association (like by referring us to a pediatric endocrinologist just so we could get to know one), and helped us feel free to FEEL.  

We may have been broken-hearted, but we were reminded that even broken-hearts can heal.

When we entered the forest; dark and foreboding, we heard that Evie had Wilms Tumor.  She would have to undergo chemotherapy and have her kidney "re-sectioned"; have part of it removed.  The doctors, nurses and staff of the Hematology-Oncology department, as well as our urologist, gave us courage to persevere.  

Again, I think it's very rare to find doctors who will gladly look at "mom" or "dad" and say, "You know many more people with WAGR than we do...what do they say?"  It's not like we mapped out our treatment, but when Evie's ptosis was so bad, our doctors listened when I said that people with WAGR responded much more dramatically to vincristine, just as those with Down Syndrome do...so, they held the vincristine a couple of different points in Evie's treatment.  

They gave us the courage to be advocates, while also allowing us to mourn and experience the grief of cancer.

We made it out of the forest and into the sunny Poppyfield of having a child who survived cancer.  While there, you like to catch up on some long over-due sleep, but you also still have some scary moments like all of the follow up scans and some much needed re-building of the immune system after having been wiped out by chemo.  We had to rely on our local clinic, (who we first met when our house landed in Oz) to rescue us on several occasions:  UTIs, pneumonia, and sinus infections abounded those first few years post-chemo.

Once we reached the Emerald City, probably around age 6 years for Evie, we were really in a good place medically.  Not so many appointments, a lot of "Six Month" follow-ups.  It was a fabulous place, a that medical utopia.  Our newest team of docs and nurses with the endocrinology department showed us that Evie was still a "horse of a different color" and she was celebrated for it.  Suddenly it was a "Jolly Old Land of Oz " and the daily "fear" that we seemed to have looming over us was dissipating.  

Our work was not done yet, though...we still had more that the Wizard wanted us to do.  Our broken-hearts had more they would need to endure.

The Wizard told us that, if we wanted to return to a "safe" place, we would need to kill the Wicked Witch by filling the hold in her heart.  The hole wasn't an immediate threat, but was looming where ever we went; taunting us and letting us know that it WOULD need to be dealt with eventually.  In spite of our fear, we knew that before we got to our knew home in Kansas (ummm....Reno)...we would need to take care of the Wicked Witch. 

Our friends from along the way came with us to the Witch's castle...Our favorite sedation nurse, Judy, who we hadn't seen in about 6 years was the nurse taking care of us from 6:30 am check-in until her shift ended at 2:30 pm.  We chatted all day long, (Evie was sedated, so that made chatting EASY!).  And even Dr. P,  our oncologist, stopped in on Monday night after Evie's surgery to say "hello" as she had seen that Evie was in-patient that night.  Having friends like these who travel this journey with us makes life so much more enjoyable.  They don't just care about us when we are on THEIR schedule; but they seek us out whenever we are in Oz.

The Wicked Witch is gone, and we wait for the Wizard to clear us for our return to Kansas...(um...Reno...).  And, although I wanted to flee from the hospital whenever I could...the smells, the sounds, the sights...I also knew that some of the most life-changing days of our lives were spent right there...in Oz.  We learned, we loved, and we fought courageously.

No, Aunt Em -- this was a real, truly live place. 

And I remember that some of it wasn't very nice....

but most of it was beautiful.
But just the same, all I kept saying to everybody was, I want to go home. And they sent me home.

Dorothy ~ The Wizard of Oz

All Power Has Been Removed From You~Guest Blogging Day

"Is not this the great Babylon I have built as the royal residence, by my mighty power and for the glory of my majesty?"  Even as the words were on his lips, a voice came from heaven, "This is what is decreed for you, King Nebuchadnezzar:  Your royal authority has been taken from you."  Daniel 4:30-31 NIV

"You are an amazing mom."

Those words DO encourage me; they lift me up on weeks like this one, when my daughter's had her Atrial Septal Defect repaired and we got to spend the night in the hospital. Reading the virtual cheers and supportive comments on Facebook gave me energy, and helped me get the boost I needed to power through the long night.  Read More On Comfort in the Midst of Chaos...

WAGR Wednesdays~Expect the Unexpected

As I sit here in my recliner, with coffee in my hand and cats on my lap..(well, the coffee isn't in my hand right now; that would make typing too difficult), it makes sense to me that I should write about the many times that I have been caught "off guard" regarding some of the difficulties of WAGR, or the resulting health conditions.  I've decided, however, to just write about the most recent...

Evie just had her atrial septal defect repaired (a hole in her heart that never fully closed).  While ASDs use to require open-heart surgery, they are now repaired with cardiac catheterization.  From the written description and verbal descriptions of the procedure that I received, I was expecting that Evie would have a 3 hour procedure during which a catheter would be used to access her heart through a vein in her leg.  She would be left sedated for most of the afternoon, as a four hour period would be required to allow the vein in her leg to seal back up.  The literature says that, often, if the procedure were diagnostic, the patient could go home the same day; if the procedure was performed to place a device (which was our case) the patient would stay overnight for observation.  Pain is not typically reported by patients, except maybe for a discomfort in the access area.  Patients can usually go back to school the day after returning from the hospital with restrictions in Physical Education class and recess for about a week.

I'm thinking:  This will be a breeze!

I told Evie:  You'll be asleep during the procedure and then we get to have a sleep over at the hospital.

I pictured:  Having dinner, watching TV, playing cards, doing Madlibs and reading books.

Here is what we actually got: 

Expect the Unexpected

A vein that did not "seal up" as quickly as they anticipated.  Five hours after Evie returned to her recovery room, we slowly got her up and out of bed as she had indicated she needed to use the bathroom.  We took a few steps toward the door with her and the nurse said, "Whoop, whoop, let's go back."  I looked down and saw the blood dripping on the floor, streaking down her leg and staining her white sock.  We walked her back a few steps and got her on the bed...laid her back quickly and I put my hand over her gown where the access area was.  I held pressure on there until the nurse came back with more help. 

I knew it just required more time, more pressure, and that it wasn't life threatening; but I also knew that this would set us back.  She wouldn't be able to use the bathroom like normal, and she had to go.  Our two options, after the bleeding stopped, would be a bedpan, or a catheter.  I did NOT want her to have to use a catheter; especially since she was AWAKE!

After 30 minutes of the nurse holding pressure on her leg, switching from the bloody gown to a clean gown, and wiping up the remnants of a scene out of ER or Greys Anatomy, we were ready to try the bedpan.  Nope, no luck.  Evie couldn't get herself to "let it go." 

Expect the Unexpected

With the additional time in recovery after the "incident" (as my mom, the nurses and I began to refer to it with little smiles as we knew it was a "well, crap" kind of thing), we ended up not checking into our room in the Children's hospital for another 3 hours or so.  This meant even more time "waiting"...psychologically not settling in for the night, not getting dinner (and Evie was now at 24 hours without nourishment), but just being given little bites of saltines as we couldn't raise her up more than a 30 degree angle.

Expect the Unexpected 

An IV was in her wrist this whole time.  Evie hates needles of any kind, and to me, an IV in the wrist makes me see her as "sick" and she acts like a sick child because she's unable to feel comfortable enough to do anything!  I didn't "expect" the IV.  It was actually there for the sedation initially, but they didn't remove it after the sedation because they needed to give her two doses of antibiotic before she left the hospital. 

Expect the Unexpected

Once we got to our room, we checked out the TV that was positioned perfectly in front of her and hanging high on the wall.  Super, we could watch her favorite shows on Nickelodeon.   Ah, but no.  As fate would have it, the cable stations had changed unexpectedly that day and all of the children's stations had disappeared.  

Well, let's see if they have some good Blue's Clues or Dora DVDs.  Hallelujah!  They did!  Now let's play them.  No go!  The DVD player was broken.  If any of you have seen Evie get disappointed after looking forward to something, you know that this was crushing to me...I watched her struggle all day long, and now this?  I was glad to have loaded up both of our iPads with Full House episodes.  We turned those on and watched them all night until about 11 pm.  

Expect the Unexpected

I expected that we'd get a good night's sleep in the hospital.  The new parent beds in the rooms were much, much, MUCH better than the ones we slept on in the old hospital when Evie was baby.  The rooms are remarkably beautiful in the new hospital as well.  However, I forgot about the rule of life in hospitals that states:  

Monitors that are on will sound alarms between the hours of 12 pm and 7 am as frequently as possible.

I turned Evie's iPad on to Life 102.5 so we could listen to the music through the night.  That helped...at least each time I woke up and had to call the nurse to fix the monitor I was ministered to through the inspiring music.

Expect the Unexpected

I expected to go and get coffee in the morning, and have that go smoothly; but instead I ended up with half and half down the front leg of my jeans.

I expected to see Evie bounce back as she normally does; but instead she seemed afraid to walk (likely because of the "incident" from the day before); she was second guessing her own abilities, and that wasn't normal.  

I expected her to want to Facetime with people; but instead she was so tired that she didn't want to see or talk to anyone.

I should learn to expect the unexpected when it comes to life.  But, we'd been in a medical utopia of "not much going on" and I got out of practice.  That's probably good; to think that we had been so far removed from hospital life that I experienced culture shock at being drawn back in.  It just didn't feel good to be caught unaware with bloody hands on Monday, half and half on my jeans Tuesday, and no sleep to stop this weary mom from crying in the elevator on the way in between. 

Favorite Fridays~Our House

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

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

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

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

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

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

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

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

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

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

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

Sovereign and Mighty and Unstoppable

As usual, I'm studying JUST the right book at JUST the right time.  The book of Daniel is a remarkable example of God's sovereignty and power.  It has helped me stay level and calm in the midst of moving across the country, buying and selling a house, and preparing for Evie to have her heart surgery.  

Why am I so calm?  

The study that I'm doing on the book of Daniel has been taking me through, not just Daniel, but other parts of the Bible that speak of God's power and might over the entire realm of humankind.  This morning it took me to Isaiah 14:24, 27:

The LORD Almighty has sworn, "Surely, as I have planned, so it will be, and as I have purposed, so it will happen...For the LORD Almighty has purposed, and who can thwart him?  His hand is stretched out, and who can turn it back?" 

I have nothing to fear, for God, the Almighty, is in control. 

It is NOT up to me to find our house; God already has our house chosen.  So, if we don't get the house we want, that's because God has not willed it, and who am I to question his plan?

It is NOT up to me to sell our house; God has already chosen the person who will buy it.  So, if we don't sell it right away, or to the person who I think would be the best, that's because God has not willed it, and who am I to question his plan?

It is NOT up to me, or any other person, to ensure that all goes smoothly with Evie's surgery; God has already written her story~the story of her life; the story of MY life.  So, if there are complications with health, or billing, or anything in between, that's because God has willed it, and who am I to question his plan?

NO ONE and NO THING can stop God's will~his design is perfect.  

PERIOD.

WAGR Wednesday~Incognito

They always look so cool; styling with their sunglasses.  But, the sunglasses that our kids wear are not for fun; they are not just a fashionable accessory.  Because our children with WAGR have aniridia (no irises in their eyes), they need sunglasses in order to alleviate their photo-sensitivity.   Sunglasses are not a choice; they are a necessity. 

Evie didn't always cooperate with wearing her sunglasses.  As a baby, we had even purchased a higher priced brand of sunglasses called Baby Banz.  While these sunglasses came highly recommended, Evie's ptosis (heavy, drooping eye lids) was only aggravated by the fact that the sunglasses would wrap around her head and press the eyelids down more.  She did NOT like wearing them.  I have heard that it's quite difficult to get infants to keep sunglasses on at all; so we started with hats.

Tight hats seemed to aggravate Evie as well.  She did not like the tightness of the tiny infant baseball caps that we bought.  I found that the was much more cooperative in a big floppy hat.  Once I realized that she would leave those on, I went out and  bought as many as I could.  I even went in to Gymboree and asked for any clearance hats they might have "in back" and found the mother-load of discounted, adorable hats.

In order to work up to sunglasses, and yet be able to afford them when they would break or get lost, I started buying inexpensive, but styling ones from The Children's Place.  They would have a great variety of sunglasses and sold them 2 for $5.  We had a couple million of them.  

Once she was used to wearing these sunglasses, and she realized how much they helped keep her comfortable in the outdoors, she started to ASK for her sunglasses as we'd leave the house.  Since she was asking for them, and was no longer comfortable being without them when outside, we knew we could buy the more expensive ones without the great risk of losing a pair each week.  Julbo sunglasses were then, and are still today, the sunglasses that she wears.  They "wrap" around her face well, blocking out any light that might even try to sneak through the corners of the sunglasses; and they are very dark lenses. 

There are also swimming goggles that have darkened lenses and that's what Evie uses in the water.  Again, it wasn't easy to get her to wear goggles, but due to the sensitive nature of her eyes, and the fact that she's more susceptible to infection in her eyes, not wearing goggles was NOT an option.  She either wore them, or she couldn't get in the pool; that was our rule.

I'll be the first to stress that good sunglasses for our kids are not cheap.  Some of our kids even wear transition lenses, so they are built right in with their regular glasses.  We have started to ask for money for sunglasses for Evie's birthday at times; but she really has gotten so good about keeping track of them that we can have a pair for over a year, and don't need to replace as them as often as we did in the beginning.  Some of our kids with WAGR did GREAT with the Baby Banz too.  The key is to remember that you have to be patient and try a variety in order to find the right match for each individual.

And that's how our kids become the Hollywood mega-stars that they are.  They wear those stylish sunglasses around the town and create an aura of celebrity that follows them where ever they go.