Sunday, May 25, 2014

Where Else?

Where else but Madison, Wisconsin can you experience three seasons in one month?

On May Day there was snow.


On Cinco De Mayo there was bare ground.

On Memorial Day it looks like spring is finally here!

For ten years we lived four hours north of Madison. Here's what the four seasons looked like up there.

WINTER (made complete with a snowman!) . . .

SPRING (makes finding Easter Eggs pretty easy!) . . .

SUMMER (the kids are going to "get" me for making this one public!) . . .

 . . .  and FALL (when you never leave the house without your orange vest!)

Friday, May 23, 2014

MAY . . . I Go Home?

As I begin this post I will just share that Ken had to return to the hospital yesterday.  We were very excited to leave the transplant unit the evening of our 25th Anniversary.  We did enjoy a nice dinner with our youngest daughter before making the three hour drive.  Due to complications with the liver it was not a very good day at home so I took him back for care that we are not equipped to offer.
He has now spent close to 100 days in the hospital this year.  His MELD score has increased some as the liver is declining on a weekly basis.  It seems that there is a cycle of events that keeps him at the hospital ranging from fevers, to fluid build up, to blood transfusions . . .  We just can't get him free of needing his "partner on wheels".

Earlier this month we expressed to the doctors that MAY was a busy and special month for our family.  Ken wanted to make sure I had a nice Mother's Day. 

He wanted to see our son get ready for prom. 

 He wanted to be home for our anniversary.

He wanted to see our son qualify for the state track meet.

 He wanted to be home for my birthday.

 I'm not sure why it's not working out to be home to be a part of these things, but thanks to technology we are doing our best to bring these special moments to him.

May is not over so MAYbe he will get to come home soon.

Tuesday, May 20, 2014

Today's the Day!

Today's the day!  Twenty-five years ago I married my best friend! 

Thank you to everyone who helped us celebrate our anniversary this past Saturday.   Don't worry if you couldn't join us in person. Neither could Ken!

 A big THANK YOU to my Mom and sister for making it a very special day.

Thank you to our children for being the "blessings" that the Bible says you are supposed to be.

And after three more weeks of hospital food, it was decided that today was a good day for Ken to go home!

Sunday, May 18, 2014

No Mating Allowed!

Have you ever gotten to the end of a load of laundry just to find a mate-less sock?  Today I needed to fold some laundry real quick to be able to take some things back to the hospital for Ken.  I got down to the last few things and here was a single sock on my bed!

It was just a small load of personal items, so I wondered "How in the world could I lose just ONE sock?"  I decided to retrace my steps back to the basement.

I found not just one of my husband's socks, but two!  I never dreamed that I could be the cause of the sock problem.  I was certain these missing socks disappeared into the lining of the washer or were absorbed into the flooring of my teen-age sons room! (Can you find the seven socks, some already mate-less?)

So I did what any other good wife would do.  I kept the one sock to match it up and then added the other to the bin of "SOCKS WITHOUT MATES".  

Can you believe we have this many socks without mates?  You'd think there was a sign on the laundry room door saying "NO MATING ALLOWED!"

Friday, May 16, 2014

Plans in QuickSand!

Have you ever heard someone say that "goals should be set in stone and plans should be set in sand"?  I first heard this said by best-selling author, Chris Brady.  He was basically referring to the idea that when plans are not going the way we want we can toss them and come up with new plans.  We just need to keep focused on the goal that has been set.

When Ken and I got married we vowed to stick together for better and for worse, in sickness and in health.  On this day we set the goal to be married a long time.  

We live in a culture where many say similar vows setting a similar goal to be married a long time HOPING for five years, ten years, maybe more - if they get along, don't fall out of love, don't hit a big challenge . . .  

We said these vows PRAYING it would be five years, ten years, maybe more - if God just allowed us that much time together.

Despite the challenges that we were presented with a couple of weeks before our wedding, we were blessed with many more years than we expected.  Here we celebrated our TENTH anniversary with a renewal of vows officiated by Rev. Larry Steckling in Almaty, Kazakstan.  Ken organized this as a surprise for me on our anniversary - the renewal of vows not the trip to Almaty!  We were already living in Kazakstan where Ken was serving the LCMS Board for Mission Services.  This ceremony was special because I was presented with a ring that I always wear on my right hand.  It was special because it was translated into Russian for some of the mission staff.  BUT the biggest reason it was special was because Ken chose to do it all over again - which makes me think I was a pretty good wife if he'd say the vows twice!

This weekend I had planned to surprise Ken with a celebration of our 25th Anniversary with family and friends. I set the goal to celebrate the many years we have been given.  My family offered to do all of the work so we could focus on getting Ken home for the celebration on Saturday, May 17.  As it turns out, Ken could not leave the hospital so my plans were to cancel the event and come up with different plans.  However, my family reminded me of the GOAL to celebrate so the decision was made to continue as PLANNED.  Although the goal remains, it's days like today that makes me feel like the plans were set in quicksand instead of just sand!

Thursday, May 15, 2014

We Know the One Who Knows

Don't we all have milestone in our lives that lead us to dream of what life will be like?  I think of the graduations going on right now and all of the young people getting ready to take the next step in their lives.  Getting engaged, getting married, having children, changing jobs - all are milestones that lead us to think about the future and the way we would like our lives to be.

As we move forward with each day our hopes, our dreams and our plans will be challenged by things that we can control and by things we cannot.  New information presents itself so we have decisions to make.  A new relationship, a failed test, a job offer in another state, an unexpected illness - these and many other things will alter our path. 

Our family's story began with a circumstance that we did not choose.  Plans were already made to attend college, to walk onto the college track team, to pursue a military career and to get married.  This was a very tall order for an ambitious nineteen year old and his "slightly older" girlfriend.  So imagine just weeks before getting married being told by a specialist that you have two autoimmune diseases, both with no cures and no treatments.  Imagine being told that your life will be cut short unless you have a life-saving transplant within a handful of years.  We definitely did not choose this circumstance but every day we did have a choice on how to respond to it.

Being that young and being dealt a pretty big blow, we could have reacted in many ways to the news but in reality we both knew that for some of our plans to move forward we only had one option.  Our choice from the very beginning was to place this circumstance God's hands.  We simply committed to each other, committed to serve God in all that we did and then let Him design our future.  Yes, many plans were altered and many dreams were crushed but as one door closed, God WAS always there to open another. 

When we reflect upon the initial diagnosis and prognosis we have been granted a life much better than the doctors predicted.  We have been granted a life much better than we could have planned.  And even though the circumstance is still there and we don't know the future, we do know the ONE who knows the future!

Thursday, May 8, 2014

Is This a Hospital or a Zoo?

Ken was admitted to the hospital last week with another infection in the liver.  We were hoping that a round of IV antibiotics would stabilize things enough to return home.  Within a day of stopping the IV antibiotics and switching to pill form, he had the return of a high fever that will result in another week in the hospital.  Last week, Ken and I were walking the halls of the hospital.  We encountered many interesting things on our walk.

This is one of the cows from the CowParade.  In 2006, the year Ken had his first transplant, we toured the city of Madison to see the CowParade.  It was one of the things we did with the kids to make our many trips to Madison a little more fun. 


The cows in the CowParade were auctioned to raise money to help build the American Family Children's Hospital.  This fundraiser brought in more than half a million dollars!  It seems that some of the cows were purchased and placed on display in the hospital.  Others can be seen around town at the businesses that purchased them.

However, when Ken and I strolled the halls of UW Hospital and Clinics, we discovered many other animals making us wonder . . .

. . . is this a hospital or a zoo??

Tuesday, May 6, 2014

Are Your Ducks in a Row?

I don't know about you, but I am happiest when my ducks are in a row!  I love it when everything has a place and everything is put back in that place. Some time after having children it seemed like I could never get those ducks to line up just right.

Then add in a decade of unpredictable medical issues that has had our family bouncing back and forth between our home and a city four hours away.  I often get asked "how do you keep it all together?"  The truth is I don't keep it all together but I have learned some organizational habits that have made things run a little smoother.  I thought I would share some of those tips here from time to time.  It won't matter your circumstance - this tip could save you some time, reduce some stress and possibly add in a little spontaneous fun.

For over twenty years I have had a "picnic basket" in my vehicle at all times.  It has changed forms over the years.  When we owned a Chevy Astro the picnic items were in a wash tub that slid under one of the bench seats like a drawer.  This is what it looks like now.  It sits in the back end of our Town & Country as I write.  There are times I may put it back in the wash tub and slide it into the Stow-n-Go.  It can also be moved easily into the trunk of a car.

In the bottom lays a table cloth.  There's a small bag of table cloth clips which comes in handy whenever it is windy.  There are eight cloth napkins which is also nice to have on those windy days.  I pack a medium sized plastic container with a lid to hold plastic silverware, a sharp knife, a can opener, a bottle opener, clothes pins, a mini bottle of dish soap and some hand sanitizer. There are several clear zip-lock bags to hold plates, cups, paper towels and extra paper napkins.  The bags keep everything clean.  I tucked away several plastic shopping bags in one of the side pouches of the basket.  This makes it very easy to clean up the trash when we are done.   There's also a glass bowl in order to heat things up in the microwave which comes in handy whenever we are at a hotel.

This all fits very nicely in the basket and is wonderful to have at all times! It makes it possible to run through a grocery store and have a spur of the moment picnic.  We have used these items for planned reunions, camping and road trips.  I just refill the items and wash the cloths each time we get home.  

Some friends have said they can't believe I would be this prepared.  I can't believe that I have had a picnic basket in my car for over 20 years!  So, as you see my ducks aren't always in a row, but we ARE ready to have some fun no matter where we are!!

Thursday, May 1, 2014

Life on the List

A few days ago I gave an introduction to how Ken is doing and I will post updates here when there is something significant to share.  Right now he is back in the hospital due to another infection.  We hope that he can return home within a week.  He is doing well with the treatments and appreciates the prayers, encouragement and comments left on this blog.

Here's a little more detail about PSC (primary sclerosing cholangitis) and why Ken is spending so much time in the hospital.  He is currently dealing with his second battle with this liver disease.  It is a rare autoimmune disease that attacks the bile ducts of the liver and can lead to complete liver failure.  The only "cure" for PSC is a liver transplant.  Many people have PSC and never need a liver transplant because the liver damage is not severe enough to require a transplant.  A small percentage of people who have had a liver transplant due to PSC have had a return of the disease in the transplanted liver.  Ken is one of the few to whom this has happen and is now on the liver transplant list a second time.  Talk about being an over achiever!

There is no treatment for this disease so doctors must help manage the symptoms caused by the inflammation and irritation to the bile ducts.  The symptoms can range from mild to serious.  The more damage to the liver over time, the more serious the problems.  The inflammation often leads to blockages and infections in the liver which can require hospitalization for IV antibiotics.  Right now this disease has caused one infection after another for the past five months so this is why Ken has spent more time in the hospital than at home.

Sorry there's not a lot of fun in this post but come back again because you never know when I will say something crazy on the World Wide Web!