The right thing to say

On our way to church this morning Keaton said, "I'm not sure if 'Happy Anniversary' is the right thing to say today." I wasn't sure either.  I think I replied, "It's fine."

So do you say "Happy Anniversary" when someone isn't on Earth to celebrate?  I thought about that a lot today.

No matter what, it's still an anniversary..."the date on which an event took place in a previous year." It could be a business opening or starting a job or getting married or an accident.  Even if Kevin isn't here, the event still happened.  The anniversary doesn't disappear.

If Kevin had been here today, and been healthy, we most likely would have had a pretty uneventful and normal day...church, breakfast, chores, a motorcycle ride, and probably a meal at Culver's.  We were never big on flowers or gifts or surprises.  We didn't need it.  Quite often it felt like every other day.  However, today, I found myself repeating in my head over and over, "Today is our anniversary." I'm not sure why I needed to say it again and again.

It felt right today that we had the opportunity to visit with both sets of parents.  It also somehow felt right that I found out this morning that Kevin's grave stone had been put in place and we had the time to visit his grave site.  As I thought at the time of his burial, the setting is beautiful.  You can't help but appreciate the surroundings.

So back to the original question, "Is Happy Anniversary the right thing to say?"  Although there have been sad moments today (and will be tonight since the day isn't over yet), I think the answer is "Yes".

That incredibly hot and humid day back in 1988 was fun.  It was the joining of two families.  It was a celebration. I look back on it and we were happy. So yes, "Happy Anniversary!"

So tonight I am thankful for:

• My many years married to Kevin.
• The family and friends that I gained through our marriage.
• The wonderful ceremony and celebration we had.
• Pictures to help us remember.
• The memories.

"Two are better than one, because they have a good return for their labor: 

If either of them falls down, one can help the other up. 

But pity anyone who falls and has no one to help them up. 

Also, if two lie down together, they will keep warm. But how can one keep warm alone?"

Ecclesiastes 4:9-11

Burial

Long before Kevin was diagnosed, we had talked about cremation. It just felt like the right thing to do for us.  Kevin wanted his ashes spread on the farm.  He'd say, "Just throw me in the manure spreader." (Those one liners still make me smile.)

As the reality of death set in and we met with a funeral director and Deacon (Uncle) Bob, we learned that the Catholic faith does not allow for ashes to be distributed.  Remains need to be buried. Kevin took the lead at this point and called about a burial plot on St. Joseph's Ridge. Thankfully there was a single plot available right next to Kevin's parents' plot.  I filled out the paperwork and made the purchase.

After Kevin's death, when making the final funeral arrangements, I decided that we would have the actual burial at a later time. I knew the funeral would be large and I wanted the opportunity to visit with those who had taken the time to attend.  The drive from West Salem to the Ridge and back, along with the brief burial service, could most likely take an hour and I know from experience that many people won't stick around that long. Plus, it was January and I am not a fan of the cold.

Initially, I had planned to have the burial service around the time of Kevin's birthday (April 28). As the date approached, it didn't make sense to me.  The family would be gathering for Easter and it didn't make sense to have family make a special trip again so soon for what would most likely be a 10 minute ceremony.

Each year the Zietlow family (Kevin's mom's family) plans a reunion on the Ridge around Father's Day weekend.  Since Kevin's family would be attending the reunion, it seemed more practical to schedule the burial on the same day.  After several phone calls and texts, Kevin's mom set a date and place for the reunion.  Although the time and place changed as the date drew closer, Polly did an excellent job of keeping everyone updated.  Polly and Dave were gracious enough to host the meal at their house and even extend an invitation to my family.  (My Dad was so impressed with the food that he has already invited himself to their reunion again next year!)

Deacon Bob had agreed to lead the burial service. Because family would be taking the time to attend, I wanted to make this special. Coming up with ideas was stressful for me. Kailey had said, "Doing a Google search for burial service ideas doesn't help much." Believe me, I knew.  I had done multiple searches using various terminology myself with no luck.  I had even sent out a plea via Facebook to other surviving wives of GBM with no luck.  Other wives were looking for ideas too.

Somehow it all just seems to come together.

Let me digress a minute.  Before having embarked on this journey, I wasn't quite sure what to think of people who kept an urn full of ashes on their mantel.  In my mind, it wasn't wrong, but I just didn't understand it.  Yet, Kevin's ashes had sat in his box on the piano bench for nearly 5 months.  I wonder if people were "creeped out" by that.  No one ever said anything.  In my mind, those ashes weren't Kevin.  He is in heaven, not in that box.  Although I might have occasionally place my hand on the box as I walked by, I was no closer to him there than I was standing at his toolbox in the garage or looking at a picture of him.  Once again, this was a startling reminder to me that I cannot fully understand someone's perspective until I have been in their place so I should not make judgements.

The box that Kevin's nephew Andrew had made for the ashes had a little extra room in it.  The kids and I decided to add some trinkets that reminded us of Kevin.

• A pocket knife - because he always had one with him.  Kevin was the go-to guy at Christmas time to open a box or release a toy from its packaging because he had a pocket knife
• A John Deere sticker - for his love of farming and John Deere tractors
• A Peterbilt emblem - for his strong work ethic and his dedication to a company and the trucking industry
• A deer hunting license from the year he shot his big buck - because hunting was a family and friend tradition that he looked forward to each year
• A Dutz's beer chip - because he loved a good time and a cold beer
• A little wrench - because he could fix anything
• A do-rag (Kevin called it a dude-rag) - for the enjoyment of riding motorcycle.  Initially, this do-rag was purchased as a joke.  Kevin always wore a helmet when riding and this wasn't quite his style.  He occasionally wore the rag when his hair got grimy at work so he'd keep the inside of his helmet clean.  Later, after his head was shaved for surgery, he said the hair stubble felt like velcro on his helmet so he wore the do-rag as a covering.
• A Whelen racing/Nascar patch - for his love of racing, especially with Keaton.  Like the day of the burial, the Saturday before Father's day was when Keaton won a feature in the Sportsmen division.  Kevin was so proud.  He said it was the best Father's Day present.
• A finger rosary - to represent faith in Kevin's life
• A picture of our family - to signify the importance of family in Kevin's life and how important he was in our life

The stone marks Kevin's parents' plot. The white planter is

not styrofoam as many thought...it's a Pinterest attempt at 

a planter using a cinderblock.

The burial service was scheduled for 3:30.  I had pushed the kids to get ready so we could arrive early.  I had not seen the actual burial plot yet and I felt the need to get mentally "set up." Not surprisingly, Uncle Bob was there when we arrived, perhaps doing the same thing.

Although it wasn't expected because people had already said their goodbyes during the funeral in January, it was heartwarming to see so many people there and hug them as they arrived.  Normally the Ridge is always windy, that day was still and cloudy.  The setting was beautiful overlooking the sloping hills, trees and fields.

Bob let me start things off.  I thanked everyone for coming, gave an overview of what to expect, and then asked for some time with just the kids and I at the end.  I knelt down next to his box and talked about each of the items we had selected as a remembrance of Kevin and placed them one by one in the box before closing the latches. As Deacon Bob continued with the readings and prayers, I couldn't help but look out and appreciate the people there as well as the beautiful surroundings.

After Deacon Bob, the kids, and I had sprinkled Holy water onto the box, Keaton lowered it into the ground.  I had asked Dave and Polly to bring dirt from the farm since Kevin's ashes could not be spread on the farm.  With an old metal bucket of farm dirt and a basketful of rose petals (dried from the funeral bouquets) next to the plot, we asked people to come forward to spread the dirt and flowers.  The kids had chosen two songs to play in the background as people came forward (Carrie Underwood's See you again and Zach Brown Band's My Old Man).  It was a thoughtful tribute to a wonderful man.

  

As the other's left, the kids and I sat around the burial plot. I pulled out a blue folder with two typewritten pages...letters to Keaton and Kailey from their Dad.

As Kevin worked through his journey to the end of life, I wanted him to do things his way rather than what I thought I would do if I was in his place.  Initially, I don't believe Kevin thought he was going to die.  Eventually, as his body began to deteriorate, reality set in.  I finally asked him about writing letters to the kids. He was hesitant, undoubtedly unsure of what to say.  I told him I'd open my computer and type.  He could just talk.  Unfortunately, I had waited too long for my request.  He had trouble remembering. He repeated himself. I tried hard not to supply my own words and ideas but instead asked questions to provoke his own thoughts. They aren't great letters but he said over and over how proud he was of them.  I'm hoping that is enough.

This afternoon, as I reflect on the burial eight days ago, I am thankful

• for having had a conversation about cremation long before death was in the picture.  Have you made your wishes known?
• for Uncle Bob's guidance and patience as I try to add my personal touch.
• for music that adds that special effect and often says things better than plain words.
• for the love and support of families.  I am so lucky.
• for Kevin's advice on not making a big deal out of things because it will all work out in the end.
• for memories.

We are confident, I say, and would prefer to be away from the body

 and at home with the Lord. 

So we make it our goal to please him, 

whether we are at home in the body or away from it.

2 Corinthians 5:8-9

A Work in Progress

Tonight is the first Monday night I have been home in several weeks.  I had heard through more than one source that Grief Share was worth looking into.  Since mid-March I have been attending Grief Share sessions at First Free Church in Onalaska every Monday night.  Even though I started the class halfway through, it was well worth my time. Each week, either personally or through the class, I made some discoveries.

My first session was on guilt and anger. Thankfully, I've never been angry at God for Kevin's tumor and death.  And I can't ever recall Kevin saying, "Why me?" We knew it was something we couldn't change so it wasn't worth being mad about. Unfortunately, I do have some guilt to work through.  My lack of patience with Kevin in his final days still haunts me.  He didn't sleep so I didn't sleep (and ask anyone, I can get pretty cranky when I don't sleep). His tumor got in the way of normal brain function so moving him, bathing him, and changing him became so difficult.  It wasn't his fault that his brain got things all jumbled up so following basic directions became nearly impossible. Sadly, my impatience rang through.  I so regret not making his final days more peaceful and enjoyable.  Our Grief Share lesson suggested replacing "I should have" with "I did the best I could under the circumstances." I may get there, but right now that doesn't seem good enough. I could have done better.

Again, thankfully, I'm not feeling the "if onlys" when it comes to Kevin's treatment. Yes, I sometimes wonder if a different choice would have given us a little more time. But as Zig Ziglar said, "Psalm 139:16 clearly states that our life every day is measured, meaning simply--God knows the exact time that we will die.  He knows when He's going to call us home.  There's nothing you can do to extend your life span (or someone else's) one-tenth of a second." The smart alec me took that a step further. Since God already knows how long we will live, why do we need to worry about diet and exercise? Spoken like a person who is trying to justify eating a bag of chips on the couch and her only exercise is walking into the other room to fetch those chips!

I still struggle with my lack of endurance and difficulty with focus.  Doing my job seems mentally hard. Even finding the right word or finishing a sentence can be a struggle some days. By the end of a week, I am really dragging physically and mentally. It's hard to rationalize, but going to this class helped me realize that this is a normal part of grief.  That doesn't mean I like it and I'm waaaaay  ready for this stage to be over.

One week was about being stuck in grief.  In general, the concept didn't apply to most of us because our grief was still so new.  But the lesson still taught me some key concepts.  First, I need to do my grief work.  I need to go places inside my heart, soul, and mind that I don't want to go.  I can't skip it.  I can't stuff it.  I have to go through it.  This is something I need to work on and I'm not quite sure how to go about it.  Second, I need to be grateful. Gratitude is a healer. When I'm feeling sorry for myself I need to turn that around and be thankful for all that I have. Third, I have a purpose.  There is a reason God didn't take me.  I don't know what that purpose is yet but I need to ask God to help me figure it out.

The next class helped me realize that I am not just grieving the loss of a husband; I've lost everything Kevin was to me.  Kevin played so many different roles in my life.  Each time I encounter a situation where that role player is missing, grief is likely to hit again.  It seems obvious, but I had never thought of that before.  Honestly, I don't think we truly realize how many roles a person plays in our life...until they are gone.

Clearly I missed Kevin the mechanic when my lawnmower got the best of me. Here's the update on that saga.  That lawnmower never showed any form of life again.  Keaton thought I should buy a Honda.  So I did my research and read the reviews.  On an early Saturday morning I made my way to Home Depot to check it out.  I monkeyed around with the demo model acting like I knew what I was doing (who was I trying to fool???).  A couple ventured into the lawnmower aisle looking at a different Honda model.  I got brave and questioned them about the purchase.  They were totally in favor and pulled one off the shelf in no time. My scared self said "Go for it." As a store attendant went to get a cart, I looked a little more closely at the other couple's box.  Light bulb moment.  There was NO WAY this box was going to fit in my car.  Stupid me.  I held on to my little bit of bravery and purchased it anyway since I could pick it up later when Keaton got home with the truck.  Without a doubt, I was missing Kevin the decision maker too.  This wouldn't have been so hard for him.  By the way, I went all out and bought the model with an electric start.  Go me!

I am constantly reminded that these trials are making me stronger.  I caught a show on Netflix last night where the narrator stated: Problems make us grow.  They sculpt our soul. They make us more. He said we should be thankful for our problems because they make us who we are. Really? Who thanks God for their problems? But it makes sense...once we get through it we can appreciate what that situation has done for us. My triple starred quote for the week was "Grief is an opportunity for interior remodeling." That gives me hope.

Chapter 12 of our lessons on grief was about heaven. Once again, some simple thoughts hit home.  We often use the term lost when we talk about the death of a loved one.  "I lost my husband in January." But if you lose something, you don't know where it is. I didn't lose Kevin because I know he is in heaven.  Along those same lines, the video we watched asked if we would like our loved one back? My gut reaction was, "No. I want to go there." Do I wish he'd never left? Definitely. The speaker in the video went on to explain how selfish it would be if we asked for our loved one to return. Why would we want to take them out of paradise? I did leave this meeting with lots of questions on the resurrection.  Not the resurrection of Jesus but the resurrection on the last day. I need to do some studying on this.

Being a part of this group has also led me to question what I pray about.  To be honest, it has always bugged me when people asked for prayers about little things.  "I'm driving to the Cities. Pray for me." It's not that I don't want them to be safe and I have asked God, especially during major travel weekends, to "keep those who are traveling safe." In my mind, God is really busy.  He has the world to deal with.  So when I'm praying, I want to concentrate on the really big requests because they are so much more important.  I'm starting to shift on those thoughts.  One of the group members gave me this analogy...compare it to a mother listening to their child.  If your child needs something, you will listen.  It doesn't always mean the request will be answered, but God will listen.  That's another work in progress.

So tonight, as I reflect on my class I am thankful:

• for God and the hope he gives
• for Heaven, Kevin's new home
• for my wonderful support system of family and friends
• for the time I had with Kevin and the many roles he played
• for people who willingly lead grief classes in an effort to help us heal
• for problems (aka opportunities to be brave or learn or grow)

"Consider it pure joy, my brothers and sisters, 

whenever you face trials of many kinds, 

because you know that the testing of your faith produces perseverance. 

Let perseverance finish its work so that you may be 

mature and complete, not lacking anything."

James 1:2-4

Admit Defeat

It is difficult to admit defeat. I put up a good battle this weekend, but the lawnmower clearly won.

Let's back up to Friday. Students capped off their American Cancer Society fundraising efforts with a fun afternoon of dying hair, pie-in-the-face, dunk tank, hot wing eating, kissing a pig, etc. I really wanted to continue the festivities and support my two colleagues at the Relay for Life that evening. But as I walked out to my car at the end of the school day, I knew I wasn't coming back in a couple of hours. It would be too emotional, too much.

As I sat in the car on that beautiful sunny afternoon, I thought, "Now what?" I had no plans for the weekend.  Normally, that might be a good thing.  Nothing scheduled.  No "have to's". Kevin and I might have gone out to eat or taken the motorcycle for a ride or invited friends over. But I was alone with no plans. It wasn't the same.

So I decided the one thing I wanted to accomplish this weekend, since the weather would be perfect, is to dethatch the lawn.  Challenge accepted.  I knew the thatcher was in the attic of the garage but I had no clue how to attach it to the lawnmower.  Once upon a time we had a blade with tines on it so I was halfway thinking I would have to change blades on the lawnmower.  After hauling it down I quickly discovered this version just snapped on to the front axle.  Piece of cake! In talking with Keaton on the way home from work, he reminded me, "I don't think putting on the thatcher will be a problem for you. Starting the mower will." I filled the gas tank, made an attempt at checking the oil, pumped the primer, and started pulling.

During this process, my neighbor Jeff got home from work.  As he walked to get the mail, he could hear my efforts.  He volunteered to give it a try.  One pull.  Yes, one pull, and it started for Jeff.  I hung my head.  Happy that it started but defeated that it was so easy for someone else.

I dethatched and bagged until the mower ran out of gas. It was a dirty, dusty business so I was okay with stopping for the night. It was time to get something to eat.  I could do the second half tomorrow.

Saturday dawned bright and sunny as promised.   The verse at the bottom of this post stuck with me. I resisted the temptation to lounge in bed and read because I had made quite a list for the day.  Bank, library, laundry, lawn and gardens were the bulk of it. On a normal weekend (I've said it twice now so I guess "normal" means before Kevin's cancer), we would have split the tasks.  I can picture Kevin sitting at the counter paying bills and getting ready to go to the bank while I started the laundry.  I think I would have even convinced him to stop at the library to pick up my book since he was out and about.  After I did the running, I decided to work on cleaning out the flower beds while doing laundry. Since running the mower was so dusty, I would tackle that after lunch.

Ha! Easier said than done.  The real battle had begun.  I filled the gas tank and pumped the primer.  I pulled several times.  Primed some more.  Pulled some more.  Pause.  Catch my breath.  Try again. Use two hands for more strength.  Nothing.  Wait 15 to 30 minutes.

Repeat the process.  At one point the mower jerked back over my foot, bending my toenail back. Do a little dance around the driveway to ease the pain. Try again. I was feeling frustrated and defeated and emotional. While taking a breather in between pulls, I glanced around the neighborhood houses, wondering who might be possibly watching out the window getting a little entertainment for their afternoon.  As if reading my mind, neighbor Marty walked over.  He hadn't been watching out the window, but had been working out back and heard my efforts.  Note: he was NOT hearing any expletives echoing through the neighborhood. I was sure Marty would make that mower come to life because I just wasn't strong enough.  Nope. He thought it was flooded and maybe needed to look at the spark plug.  I could tell this wasn't his comfort zone. He told me he had an electric start mower for a reason.  I told him not to worry about it.  I would let it sit and try again later.

Youtube here I come.  Where is the spark plug on a Snapper mower? Huh. Not so hard to find.  Now what size socket do I need? Back to Youtube.  Five-eighths deep socket. I knew having the right socket wasn't a problem, although I couldn't magically know which one was 5/8 like Kevin always did.  After removing the spark plug, I was back to Youtube. How do you know if a spark plug is fouled? I still don't know.  The one I removed was black and those shown on the videos were black too so I'm going with it. Can you clean a spark plug? One guy said to use a wire brush, but the many comments below his advice said no way. I decided to ditch that effort and prowl around Kevin's toolbox to see if he had a new one. Yep.  New, in the box, same number and even labeled "lawn mower".

I put the new spark plug in and was certain this was going to be the cure.  I made a pull but heard a ch ch sound. Was I hearing things?  Try again.  Same noise.  Back to Youtube.  Believe it or not, there's nothing on Youtube about your lawnmower making a ch ch sound. (I am envisioning those reading this with some mechanical sense are now busting a gut with my antics.) I took the spark plug out and tried again.  The Snapper guy on Youtube said not to get it too tight. I pulled again.  Same sound.

By this time, long over an hour had passed, and emotions were getting the best of me.  I was sitting in the driveway, next to the mower, socket wrench in hand, bawling.  I knew this emotion wasn't really about the lawnmower not starting.  If that was the case, I should be mad.  In reality, I knew it was because Kevin wasn't here...to fix and make things better.  I was on my own and I was failing at this task.

Could I call people for help? Yes, but people have plans on a beautiful Saturday.  My plans don't need to become their plans.  However, my Dad was en route to Alabama so I wouldn't really be bothering him if I called.  He wouldn't feel he needed to drop everything and come over because it wasn't possible.  Luckily, I caught them at a fuel stop.  Of course, explaining the sound meant nothing to him.  So I put the phone on speaker and pulled a few times.  "Did you hear that?" His quick response, "Yes.  Your spark plug isn't tight enough." That made sense.  "Thanks. I'll try again."

Try I did. I would do another job for a while and come back and try again. Both hands had small blisters. I imagined I might wake up Sunday morning with my right bicep bigger than my left. After multiple hours of attempts, I finally quit for the day.  I had plans (yay!) to attend First Free Church in Onalaska with friends so I needed to get cleaned up.

Today, Sunday, was a new day. Yes, my body was complaining and I was moving slowly at first. But I hadn't given up hope. In my research there was mention of cleaning the air filter. With the assistance of the experts on Youtube, I figured out how to remove the air filter.  It didn't look bad but I vacuumed it out just in case. It didn't matter.  Even neighbor Jeff, who started it with one pull on Friday, couldn't get it started. By early afternoon I admitted defeat and parked the mower back in the garage.

So tonight as I am vegging on the couch instead of conquering my to do list for school, I am thankful:

• for cell phones that can be taken nearly anywhere and allow you to ask for help from someone miles and miles away.
• for having people knowledgeable enough to answer my questions.
• for the wonder of Youtube and the people willing to share their expertise online.
• for neighbors who willingly reach out to help neighbors like me.
• for my husband's tools and his foresight to have an extra labeled spark plug on hand. By the way, I bought a replacement spark plug for the tool box today.
• for the beautiful weather that allowed us to enjoy the outdoors this weekend.
• that my lawnmower doesn't have a human element allowing it to gloat over its victory!

He is like the light of morning at sunrise on a cloudless morning,

like the brightness after rain that brings grass from the earth.

2 Samuel 23:4

Insurance

Obamacare. Trumpcare. It's all over the news. Which one is good? Which one is bad? I think we could debate those questions endlessly, and because we are all of different age, income, health status, and positions in employment, our needs are varying...which makes it difficult to agree on what is best.

Personally, I am not one who is big on handouts.   However, this is an area where I feel differently. I believe we ALL need access to affordable health care insurance. Fortunately, our story is living proof that quality health insurance is a necessity.

I think I used to take insurance for granted.  We were a healthy family and we rarely went to the doctor.  Yes, there were times when I most likely lost my nomination for "Mother of the Year" award because I should have taken the kids to the doctor sooner.  But, as I've said before, we (not sure if I can speak for Kevin, so maybe it's I) were more of the "Buck Up" mentality.  Many years we never even met our deductible.  I chalk that up to being healthy.

With rising insurance premiums, those who are healthy start to question, "Is it worth all of this money my employer and I are paying?" We quickly found out...Yes.  Yes it is.

For example, Kevin's initial diagnosis of a brain tumor, subsequent surgery, diagnosis and hospital stay totaled $111,223.  Imagine, over one hundred thousand dollars in less than a week.  That's half a house for many people.

Consider this scenario...it's December 11, 2015.  We are home from the hospital and know that Kevin's diagnosis is one year, plus or minus six months. However, instead of having a quality health insurance policy, we have no insurance.  Think about where our mindset would have been.  Instead of focusing on family and friends, our thoughts would have been clouded with paying bills.  Could we have managed? Yes. But we are savers and have put money into retirement that could have been tapped into.

Bigger picture...how would these initial bills with no insurance have affected our thoughts on treatment? Radiation preparation and planning plus treatments totaled $156,785 for January and February. Would it have been worth it?  I am just so thankful we weren't put in that position to have to make that decision.

Can you see how people become homeless?  When a medical tragedy occurs, how do you recover financially unless you have insurance?

I could keep going.  The Avastin infusions for the month of June were $43,713.  Every MRI was over $6000.  Not to mention the "smaller' charges for regular lab work and doctor visits.

Jump ahead to November 2016 when going in for an MRI at Mayo, they discovered that Kevin had a saddle embolism (massive blood clot) in his lungs and more clots in his leg.  The subsequent hospital stay and treatment for those three days total $74,540.

When the third week in December rolled around (just over a year after diagnosis) the decision was made to discontinue treatment and start hospice.  Although less expensive than many treatments, hospice certainly isn't cheap.  Patients are charged $271 a day whether they see or talk to hospice personnel that day or not.  Twenty-six days on hospice totaled over $6500.

PLEASE, don't interpret this as a woe is me.  I want this to be an eye opener.  I pray it doesn't happen to others, but people have to realize that a medical issue can turn your world upside down.  Not just mentally and physically, but financially if you don't have insurance.

I pore over these hospital bills and insurance paperwork to remind me of how lucky I am. THANK YOU, THANK YOU, THANK YOU for my insurance!

So as our politicians continue to debate the health care issue, I pray that they truly look beyond Republican and Democrat to create a plan that will allow everyone the luxury of health care insurance.

So tonight I am thankful:

• for an employer who offers and contributes to my health care insurance.
• for the role modeling by both Kevin's parents and my parent's in living within our means and saving for emergencies.
• for the freedom to share my thoughts and express my opinion...and the people who take the time to read what I write.
• for a Badger game on the agenda tonight!

"Finally, brethren, whatever is true, whatever is honorable, whatever is right, 

whatever is pure, whatever is lovely, whatever is of good repute, 

if there is any excellence and if anything worthy of praise, dwell on those things.

Philippians 4:8

Is this what grief feels like?

Back in the day, the book of choice for all pregnant women was What to Expect When You're Expecting. It was considered America's pregnancy bible and I remember reading each chapter dutifully as time progressed so I was ready for the changes ahead.  It makes me wish there was a manual for grief.

Rightly so, that's not possible.  We all grieve differently.  And there are different kinds of grief.  A loss of a child is different than a loss of a parent which is different still than a loss of a spouse.  I know that there is no real right or wrong way to grieve.

So people ask, "How are you doing?" I'm not good, but I'm definitely not bad.  So I answer the only way I know how, "I'm okay."

There is not one perfect word to describe how I feel.  The word numb isn't quite right.  I still laugh and cry so I'm not void of emotion. Yet, I'm not excited about things in general like I used to be.  It dawned on me on Thursday, when a colleague and I were going to introduce to students a project he and I had been meeting about for over a month. He had put in a tremendous amount of work and said when I walked in Thursday morning, "Aren't you excited?" My brain paused.  Wow, I realized I should be excited, but I'm not.  I quickly recovered with a lame excuse and a sigh, "I'm just tired." Inside I'm thinking, "What??? You just finally had a decent night's sleep after a wind-less night. Are you really tired?" Perhaps this kind of numbness is a coping mechanism. I won't let myself get too high because I don't want to get too low either.

I feel like I lack stamina and energy and focus.

Everyday things that seemed to matter before aren't important now because it's just me.  Take grocery shopping for example.  I've never really minded grocery shopping...sometimes I even like it. But last week I found myself wandering around the store...struggling.  It was just a foolish struggle in my mind about my purchases.  Some things were too big, I'd never be able to eat them. Do I start buying single serving frozen dinners? How good are they? How healthy are they? All silliness but I was glad that I didn't see anyone in the store and risk having them ask how I was doing. (If you are curious, I left with (among other things) two frozen dinners and a GALLON of vanilla ice cream.   No, I am not acting out the female stereotype of tearfully eating my way through grief using ice cream.  I'm not even a big fan or plain vanilla ice cream--now chocolate is another story.)

Cooking is another struggle. I used to enjoy spending time on the weekend cooking for the week.  It felt good to have meals ready so when we got home from work, life was simpler.  Kevin was always easy to cook for so preparing home cooked meals gave me a sense of accomplishment. But now, cooking for me, doesn't have the same satisfaction.

Reading back through this, my descriptions are so petty.  I really am okay and things could be so much worse.  I don't stay in bed all day sobbing or depressed. I'm not drinking myself into numbness (although I did fix myself a Bloody Mary for the second half of the Badger game today).  I don't need drugs to keep me going. I'm functioning.

I am also learning about myself.  I always knew I was a procrastinator, and Kevin was not. Unknowingly, he sometimes guilted me into getting things done just by working hard.  I'm sure he never knew. But I certainly couldn't be sitting on the couch like a lump, when there were tons of things to be done, while he was toiling away getting his jobs done.  Now there is no one to subconsciously push me.

And I find I procrastinate such silly things.  Take putting gas in the car as an example.  I've never liked putting gas in the car, and quite honestly, I never even paid much attention to it.  Kevin would say, "How much gas is in your car?" I would stare blankly, "I don't know." It was something Kevin just took care of for me, even though I never asked him to.  Now, when I'm running low on gas, I think, "I'll get it tomorrow" instead of filling up as soon as I notice.  This morning was a prime example. I was going to Winona and knew I was low on gas.  The quick glance at the gas gauge led to the "can I make it to Winona or do I fill up before I leave?" Seriously?? Just put gas in the car. I filled up before I left and immediately thought, "Was that so hard?" (one of Kevin's lines).  No. Just get it done.

So as the weekend draws to a close, I reflect and am thankful:

• For my kids.  When we are together, it feels like a family again, even though an important piece is missing.
• For the four day work weeks I have had lately.  I haven't had to make it "just one more day" to get through the week.
• For Sunday afternoon naps.
• For realizing my struggles are minor and could be so much worse.
• For struggles which allow me to grow if I view them as opportunities.

More than that, we rejoice in our sufferings, 

knowing that suffering produces endurance, 

and endurance produces character, 

and character produces hope, 

and hope does not put us to shame, 

because God's love has been poured into our hearts 

through the Holy Spirit who has been given to us.

Romans 5:3-5

Good People

My head feels like its spinning. There are so many directions I could take this post.  Emotional overload. I plug along each day but I feel like I lack stamina and focus.  I'm guessing one key cause is lack of quality sleep. (Don't worry when you read this, Mom.  My sleep malfunctions are probably due to some changes in thyroid medications. No biggy. I'll figure it out). Of course, there is also this lack of exercise thing that's going on too.

By the time the end of the week rolls around, I'm dragging and I don't feel like I have accomplished much. This morning I had to sit in the car a few minutes before I could make my way into work.  I wasn't sad, but it felt like I had to give myself a pep talk..."You can do this."  "This" is just work. No big deal. Not sure why I have to talk myself into it.

I rushed out of work at 3:30 to get to LaCrosse.  I had finally found someone who provides a Medallion Signature Guarantee.  What?? Exactly.  It was described to me as a "notary on steroids" and "your bank should be able to provide it for you." The guy must have thought I lived in Bangor, Maine, and not Bangor, Wisconsin.  I did some internet searching and calling around to LaCrosse banks and found that, unless you are one of their customers (like 90 days or 6 months--not open an account today), you are out of luck. Until I found Associated Bank! Look at all you are learning from reading this post...that there is such a thing as a Medallion Signature Guarantee AND you can get one at Associated Bank.  Pretty neat.

I even arrived home in time to catch my wonderful neighbor walking home from getting his mail so I could thank him.  On one of these warm afternoons he removed the final posts from the ramp that had been frozen into the ground. I appreciate how he's looking out for me...and I know he misses Kevin.

My walk to the mailbox wasn't quite so pleasant when I spotted the thick stack of insurance bills.  Ugghhh! The necessary evil.  Kevin hated getting the sporadic bills because he felt like he was paying them all of the time.  So he had all of the insurance for the cars, motorcycle, snowmobiles, etc. sent at once. I agree though.  Pay it once and get it over with.

Ironically we received two letters from Gundersen.  One asking Kevin for a donation and the other stating how sorry they were that my loved one had passed.

"Kevin wanted this card to be sent to you."
"I will be with you always" Matthew 28:20

I was pleasantly surprised to find a couple of cards. And then this happened (see pic) and I lost it. Completely lost it.

There is some amazing angel out there who worked very hard to stay anonymous and send me this gift. What I quickly realized is that the guilty party could be so many people. I am constantly overwhelmed by how terrific people are.  It is hard to wrap my head around.

The goodness of people continued all night.

The girls basketball tournament game had been rescheduled to tonight because of the predicted weather.  Since the boys already had a scheduled home game, we now had a double header.  Two different friends texted.  "Going to the game?" "Save you a seat." Thanks for thinking of me.

After a win for the girls, the pep band entertained us between games.  Who would have thought that would bring tears to my eyes? I'm blaming that on Mrs. Kinstler.  Hearing them play reminded me how much she has done for Kailey. And of course my mind wandered to Kailey directing her own band some day.  Would she have those relationships with her kids that make her smile like Mrs. Kinstler did tonight? I hope so.

Early into the boys game, a Bangor player came down wrong on his leg and had a terrible injury.  It's one of those things that you wish you didn't see but the picture doesn't leave your brain.  My heart hurt for the young man and his family and his team. Once the initial shock passed, it was clear again how truly fabulous people are.  Before I could really even register what had happened, people were there to help. Our off-duty first responders in the crowd were there in a second. They don't even think twice about jumping into action.

While waiting for the ambulance to arrive, a woman in the bleachers appeared to have passed out. (I am deliberately being vague on some of this because my point is not to focus on the who and what happened to them but to how it was handled). A few first responders were asked to leave the young man to attend to the woman.  A few rows above her, another woman became faint. When the actual on-call First Responders arrived, they honestly didn't know where to go first.  But they made it happen.  Those volunteers provided help and comfort.

After cool air and a cool drink, both ladies thankfully made it back to the upright position.

Once the ambulance arrived, and the young man was loaded onto the stretcher, the crowd applauded. Then the whole team came over to form a line and each give him their best. Following suit, the opposing team and coaches each wished him well.  The crowd stood and applauded, not only for the young man, but for the compassion shown by these young people.  How can your heart not be full?

Emotionally, it was too much for me.  I had to go home.

So tonight I am thankful

• for my small town bank where I feel welcome and taken care of
• for the lady who took the time to become certified to give Medallion Signature Guarantees and was willing to help me out even if I wasn't a customer of her bank
• for neighbors who are more than people that live next door
• for friends and family who check up on me via texts
• for pep bands and dedicated directors who add another dimension to the night's entertainment
• for volunteer First Responders who are always on duty
• for sportsmanship winning out over competition
• for good people
• for God always being with me

I will be with you always

Matthew 28:20

Purpose

Several people have spoken or written to me about my blog posts. The posts originally started as a way to inform, so people could get the details from the source.  They became a way of processing for me. Thoughts that ran around in my head could be written down and remembered. People have said I should keep writing. However, I'm hesitant. The thoughts still run around in my head, but there is no story to tell or sequence of events to give my thoughts direction. I fear that if my thoughts are dark, people will worry about me or think I need help. So I write this tonight hoping it will let me clear my head and not cause concern for others. Allow me to work through this. 

I remember being a teenager and writing down my life's plan...graduate from high school, go to college and graduate, get a job, get married, have children. Nothing momentous or specific. But I remember wondering, what's next? I even remember running downstairs and asking my mom something on the order of "you get married and have kids. Then what?" It felt like a let down. Unfortunately, I don't remember my mom's response. I can imagine it would be hard to explain, especially to a silly, self-centered teenager.

Check, check, check, check and check on that plan laid out by a teenager. As an adult, living the life, I think I understood it.  Kevin and I would get up every morning and go to work because working hard was part of life and it pays the bills. Although we spent lots of hours at work, there was more. We had a house to maintain and meals to cook and people to see and things to do. Days just marched by. Even though it was just Kevin and I at home now, we were still a family, just at a different stage in our life.

Today, at this new point in my life, I am struggling with purpose.

Work doesn't quite feel the same. I enjoy it while I am there, but getting there is a little tougher.  I've realized that even though we work hard and try to do our best, we are all just a cog in the wheel, and can be replaced. Kevin worked at the same business for over 29 years. Now that he's gone, the business still moves on and someone has taken his spot. A few years down the road, employee turnover and retirements will leave only a few oldies but goodies to even remember his name. That myth of self-importance to the workplace has been busted. So at this point in my life, do I want to devote all my time and energy to being this cog in the wheel called work? Even if it feels like that's all I have left?

Home life is another struggle of purpose. My routine of nearly 29 years has fallen apart.  I don't need to plan meals or cook or clean. It's just me.  If I cook a meal, it lasts me all week. It takes forever to fill the dishwasher. Laundry is done in a morning. Some of you are rolling your eyes. What is she complaining about??? I don't want to sound like I'm complaining. I just haven't figured it out yet. It's hard to explain. Those mundane little tasks you do every day may not be fun but they give purpose...a specific time to be home or chore to be completed. We take it for granted.

In reality, we all get caught up in the day to day of our lives so that most of us don't even contemplate purpose. Or we assume it's the obvious...to be a wife, to be a mom, to be a teacher... Maybe that's enough, but maybe it's more than that.

So as I come to grips with this new stage of my life, I need to regroup and find my purpose.  It may take a while.

Luckily, I have reason to be thankful:

• for another day (something Kevin always said at meal time)
• for friends and family who continue to check up on me with texts, phone calls and cards. I received more Valentines this year than I have in years!
• for a job that I enjoy and co-workers who make a difference
• for the continued prayers for all of us as we heal

In him we were also chosen, 

having been predestined according to the plan of him 

who works out everything in conformity with the purpose of his will

Ephesians 1:11

Kevin's Hands

Today, one week after Kevin's death, we said good bye.  I know the reality of him being gone has not set in.  The necessity to make decisions and complete tasks has pushed me through this week.  When I thought I would be struggling at the visitation and funeral, I found myself lifted by the many hugs and kind words of literally hundreds and hundreds of people.  There was no overwhelming grief. No crushing fatigue.  Instead there were smiles and laughter and handshakes and hugs.

Will I crash? Yes, but not today.  There were too many wonderful people celebrating Kevin's life...helping me to appreciate even more the man I shared my life with. Thank you, God, for letting Kevin be a part of my life.

At the funeral today, I shared these words I had written prior to Kevin's passing.  Was I sure I could stand up there and do this? Absolutely not.  But I believe, once again, Kevin was giving me his strength.

Kevin’s Hands

            Thank you for taking the time to come together today to celebrate Kevin’s life. Some of you have known Kevin since he was a cute little baby where his tiny fingers may have wrapped themselves around your finger.  Others may have known Kevin since he was a young boy where I envision his hands were often quite grubby as he was busy following his Dad or Grandpa around on the farm or chasing his brothers and sister.

Some of us came to know Kevin in high school.  There his hands were large and manly. As a woman, I don’t have tiny, petite hands. But Kevin’s hands next to mine made me feel small.  Not small as in diminished, but small as in protected and safe.

Many of you knew Kevin’s hands to be rough and callused and dirty.  Over the years the grease and oil of his labor had made an almost permanent stain.  When Kevin would try to “give me 5” to little kids, they often pulled back thinking he was dirty and needed to wash his hands. Back when we were getting ready to be married, it was common for the groom to wear a white tux. We knew that Kevin’s stained hands would stand out against that white suit so he spent time soaking them in bleach before the wedding. And over the years, if Kevin spent time away from work on vacation, we would tease him if his hands started to appear white again.  Time to go back to work.

He had so many calluses that heat didn’t bother him.  He was known for reaching into a campfire with his bare hands and turning a piece of wood or grabbing a foil packet off the grill without the use of tongs.

So why am I talking about Kevin’s hands? Because I think his hands represent who he was.

Kevin was physically strong. He didn’t work out or lift weights but he had muscle. Over the years, I can remember stories where some man… (let’s just keep it generic here so as not to offend anyone)… some man was pushing or pulling on something and struggling with all of their might.  Kevin would walk over, give it a grunt, and have it done.  I’m imagining some said, “How’d you do that?” while others just shook their head.

Kevin was mentally strong. As many of you know, I thought of him as my rock. While I fussed and worried, he would try to calm me down and put things in perspective. I’m hoping he can somehow continue to do that for me even though he isn’t physically present.

Kevin was funny…or at least he tried to be.  If things got tense, he could make me laugh, even if I didn’t want to. He had some zany one-liners like when someone asks, “What’s up?” Kevin would respond, “A chicken’s butt when it eats.” It just catches you off guard and makes you shake your head before moving on. Kevin used that sense of humor to tease kids.  He’d ask the craziest of questions or twist something they just said and then the poor kid would just look at him and not know what to say.  For example, a little boy might say, “I spilled on my pants at breakfast.” So Kevin would come back with, “You ate your pants for breakfast?” It didn’t take long for Kevin and his humor to forge a bond with a child. He liked to tease and he kept that sense of humor right up to the end.

Kevin was hard working. If it was farm work or spraying crops at the co-op or being a mechanic, he put in long hours to get the job done. Kevin wasn’t a procrastinator.  He didn’t wait until the last minute to take care of things in our home or yard or with our vehicles.  I always knew the lawn mower or snow blower would be ready when the time came.  If we were going on a trip, he would always check things over on the vehicle before we left and he’d pack a little tool bag just in case.

Kevin was a fix it man. I’ve always considered myself lucky to have a husband who knows his way around a tool box.  If something broke I often said, “Your dad can take a look at it when he comes home.” And he did. And he fixed it.  He enjoyed making things work again. When it came to his work, he knew his stuff and the guys at Peterbilt can vouch for that. Truckers would call for mechanical advice day or night.  Although, he did grumble about the calls where the driver says, over the phone, “My truck’s broke.  What’s wrong with it?” He always wondered how he was supposed to diagnose the problem over the phone. However, a customer told me this week, he would often call Kevin and describe what was wrong with his truck. He said, Kevin would tell him what was wrong, he would bring in the truck and 90% of the time his phone diagnosis was spot on. As I said, he knew his stuff.

In my opinion, what made Kevin good at what he did was his realization that he wasn’t just fixing a truck. He was helping a person. As I’ve witnessed this past year, he made a connection. So even if he screwed up or made a mistake, people knew he was giving his best and would try to make it right. You can’t ask for much more than that.

This past year, Kevin’s hands changed.  The stains and calluses disappeared. His hands were more pale and thin and soft. Just like his hands, Kevin’s softer side became more apparent.  The rough and tumble outer edge was wearing away. He was more outwardly emotional and appreciative. It was always there, just not on the surface for everyone to see.

I miss this guy.

He won’t be there to make sure my car is okay

or fix what I break

or be my muscles

or my strength

or make me laugh

or hold my hand… 

So I look to the Lord as it says in Isaiah: 

For I, the Lord your God, hold your right hand; 

it is I who say to you, 

“Fear not, I am the one who helps you.”

Next Step

How quickly mindsets can change.  On Thursday I wondered how long Kevin's journey would last. He was eating, his breathing was fine, his coloring was good...those "signs" of the end were nowhere to be found. I worried that it could be weeks. I knew he didn't want that and I honestly wondered how I could hold up mentally and physically for another month or so. Who knew that two days later Kevin would be gone.

Warning: This post may be too explicit for some but I record these thoughts for me. To process. To remember. 

Friday afternoon, Kevin said he wasn't feeling well.  We canceled our scheduled visitors and he was going to try to sleep. Once again, he couldn't relax.  We tried a "sleeping pill" (I found out later that day it was actually an anti-depressant type medicine which helps to relax and focus...and that never quite worked for Kevin)  We tried morphine. He was still having stomach pains, like gas pains.  Kevin just couldn't get settled so another call was made to hospice. They recommended doubling the dose of the "sleeping pill" and prescribed yet another medicine.  When I made my trip to the pharmacy that evening and found out it was Gas-X, I just shook my head.  I was looking for some "miracle" relief and I didn't think this was the answer.

Kailey and Peter were in charge as I made the pharmacy and grocery store run and Keaton was on his way home. Kevin was never able to sleep while I was gone and his thoughts weren't always coherent. He would say something that wouldn't quite make sense and Kailey, trying to meet his needs, would ask questions to figure out what he wanted.  His very clear response, "Why do you ask so many questions?"  Oh, Kevin.

We went through the meds regime again about 8:30pm.  Kevin would say, "I think I'm ready for bed." We would respond, "Go ahead." After all, he was in bed and just needed to close his eyes.  It's like his mind couldn't figure that out.  He had also started a sequence of hiccups and burps that certainly weren't helping him to relax. At 10:00 I pulled the recliner into the next room to try to get some rest. My hope was that by being 20 feet away from his bed, instead of mere inches, I wouldn't hear every movement. Kevin was having his own conversations about moving trailers and hooking up trailers. My pleas to relax and go to sleep were in vain. At 1:05, not sure why I remember the time so distinctly, I awoke with a start.  I had slept and I had slept hard.  Yippee! But Kevin wasn't sleeping. The hiccups and burps continued so I called hospice yet again looking for relief.  

The nurse on duty was on call so he was sleeping.  When I described the scenario, admitting that I was frustrated that we weren't finding relief for Kevin, he said he would need to get on his computer and he would call me back.  After hanging up, I noticed that Kevin's right arm was starting to shake. Sitting next to him on the bed, I held his hand.  His eyes began to flutter and his body started to shudder.  He was having a seizure.  Immediately, I called hospice right back. "He's having a seizure and I don't know what to do!" I had anticipated and dreaded this for the past year.  Seizures are a common side effect of brain tumors but this was his first.  Luckily, because Kevin's left side was immobile, the seizure wasn't as violent as it could have been and it passed fairly quickly.

He was wiped out.  The good news was that this was the most relaxed I had seen him at night in quite some time.  His head was on his pillow and eyes closed...but he still had the hiccuping and burping annoyance. No complete relief.  As I watched him, I worried that he had now lost movement in his right side.  His often over active right hand lay limp at his side.  The right side of his mouth didn't move so his speech was undecipherable. The hospice nurse made the decision to come to our house in the middle of the night. I laid next to Kevin and waited.

After multiple doses of morphine, other medications, and a 4 am run to the all night pharmacy in LaCrosse by Keaton, Kevin was heavily sedated. He was more relaxed but far from peaceful.  His breathing would appear to almost stop, then do heavy, fast-paced catch up breaths, then go through a series of hiccups and burps.  The good news was that the movement in his right side had returned. He could understand me and respond. Once, when the hospice nurse was on the couch, talking to a doctor on the phone, Kevin sat straight up, looked directly at the hospice nurse, and said, "Are you talking to me?" Caught by surprise, we stared back at him. He laid his head back down and closed his eyes.

Watching him, I was hoping for more relief but this appeared to be as good as we were going to get. The hospice nurse said he felt the move toward the end had started.  It could be hours or it could be days.

Around 6am the texts to family began suggesting they plan to see Kevin yet this morning. Strangely, the kids had slept through all of the "happenings" downstairs until I woke Keaton at 4. At 7, Keaton woke Kailey.  I wanted her to lay with her dad a while before others arrived.  I needed to make sure we had our time with him. 

As family arrived and they greeted Kevin, he would open his eyes and look right at them to acknowledge their presence.  The drug regime continued every hour while the living room was full of family and conversation. Hospice had called after 10:00 and suggested we try to stretch out the medications a bit so he wasn't quite so heavily sedated. Gradually, as the morning drew to an end, people started to leave.  We were still waiting for Kevin's brother Jeff to arrive from New Richmond at noon but the crowd had thinned.  I shooed the kids out to the kitchen to grab some lunch.

Kevin's breathing suddenly became more rapid and included a groan.  He definitely sounded uncomfortable.  Maybe extending his medicine wasn't such a smart idea. Kevin's brother, sister-in-law and nephew arrived.  I tried to tell Kevin he was here but he didn't open his eyes.  I felt so bad. Why didn't they get to see Kevin the way everyone else did? I kept rubbing his belly and saying things like "It's okay" or "Relax" hoping the medicine just hadn't kicked in.

Things moved quickly and it still seems unbelievable to me.  I called the kids to join us at Kevin's bed. At some point the groaning stopped and his breathing was a super fast, very rhythmic sequence. We had sat the bed up to help with the burping so he reminded me of a little old man with his head bent down giving quick, rhythmic breaths. We could see the changes to his eyes and the coloring of his hands. He was leaving us.  Suddenly, those quick breaths got slower, and slower, and slower, but always constant, until they stopped.

Tears.

Rubbing his head. Kissing his neck. Rubbing his belly. Holding his hand.

He was at peace.

It was shortly before 1:00. Most of the family had just left a little over an hour ago.  Now we had to call them back.  Kevin's entire family returned to see him one last time.

After I knew everyone was there, I called hospice.  The process of removing Kevin's body took much longer than I had expected.  Waiting for hospice to arrive. Then calling the funeral director. Waiting for him to arrive.  In the end, it was nearly 6:00pm before Kevin's body had left the house. During that time, I strangely felt like Kevin shouldn't be left alone.  We were all in the same room with him, but I felt like someone should be with  him. I'm not sure why. The kids and I needed to call other friends and family.  We ventured upstairs for privacy but I kept coming back to sit by Kevin and hold his hand or rub his belly.

At one point, we were all sitting/standing around the living room. It was quiet.  Too quiet. Sitting next to Kevin, I knew he wouldn't want this. Sneaking my hands into Kevin's side for warmth and comfort, I asked people to share a story of when he was younger. One of those nights, when Kevin couldn't sleep, I had asked him to tell me things about when he was little.  As typical Kevin, his details were sparse, so I wanted family to tell us more.  It was enjoyable to hear his brothers and sisters share (and disagree on details). I  think it was good for the nieces and nephews to hear the reminiscing and perhaps learn a thing or two about their parent.

When the funeral director finally arrived, and we said our very last good byes, I kissed Kevin on the forehead. It was cold.  But not an ugly cold. A cold like he had just come in from outside snowmobiling. Now he finally can again.

But this is just the next step for Kevin.  The next step to a greater life. I just wish I was with him. It is the next step for us too.  Trying to live here without him. Right now, it doesn't really seem real. Keaton said last night, "It feels like Dad is on a trip." We all agreed.  Last night I fell asleep in the chair.  Kailey woke me up when she was headed upstairs.  Half-asleep, I looked around and said, "Where's Dad?" She looked at me funny.  "Where's your Dad?" I asked again. Kailey gently asked, "Mom, where is Dad?"    Oh.     Reality.

As we move through this next step, we are thankful for:

• Hospice nurses who come in the night
• Peace for Kevin
• My kids. I will make it through this because of them
• Loving family who are feeling this same pain but still making sure we are okay
• People. People. People.  Who offer condolences and support and love

"The souls of the just are in the hand of God,

and no torment shall touch them.

They seemed, in the view of the foolish, to be dead;

and their passing away was thought an affliction

and their going forth from us, utter destruction.

But they are in peace."

Wisdom 3:1-3

One Day at a Time

As this disease progresses, I find myself reluctant to have Kevin take that next step.  A week ago last Wednesday (Jan 4), a new hospice nurse visited the house.  After evaluating Kevin, she was sure he was on the decline and needed a hospital bed.  What? The recliner was working fine.  How would we transfer him from a bed to a wheel chair? "You won't," she calmly answered. "But you don't have to decide right now." With a few tears, we gave the okay.

Ironically, Kailey and I had just talked about taking the Christmas tree down over the weekend. Change of plans! If we were getting a bed in our living room, there was no room for a tree.  Once the hospice nurse left, we jumped into action. My trusty helper, Kailey, ran to the attic to fetch the boxes and we disassembled and boxed it up in no time.  With the boxes still piled in the living room, there was a knock at the door.  The bed was here!  Seriously??  She had told us they don't move furniture and they don't help move patients.  Eek! We weren't ready.

Sleeping as I write this

The delivery guy set the bed up in the middle of the living room.  Once he left, we tackled the job of moving the heavy, solid oak desk from the living room to the other room.  We couldn't lift it, so we had to find and use the furniture mover stored in the garage.  The two of us managed to transfer Kevin from his recliner to the wheel chair.  Picture Kevin (wrapped up in a blanket because he was cold) sitting in his wheel chair in the door way while two crazy women pushed and pulled furniture, vacuumed 100-year old cobwebs found under furniture and maneuvered his bed into place.  There was no shortage of entertainment that afternoon and to quote Kailey, "No one got hurt!"  Kevin was snug in his new bed. An afternoon that started with tears ended up to be quite fun.

This same hospice nurse encouraged us to use the medications in the care package to keep Kevin comfortable.  For a family that isn't big on taking pills, this was another step.  How do we know he really needs them?  What does he need? How much?  This doesn't fit into the "Buck up" mentality we live by.

I've surmised, since this nurse visited, that her theories weren't quite accurate.  She was making observations without ever having seen Kevin before so she could not accurately see progression (or decline).  Kevin is not on his deathbed.  His breathing is good. His coloring is fine.  He is still eating. Is he deteriorating? Certainly.  Most likely, that is due to his tumor growth.  He has no movement or strength on his left side at all.  His right side is weaker and more inaccurate when it comes to movement.  He cannot sit up without the assistance of the bed (or a whole lot of muscle power).  We no longer make any attempt to have him leave his bed.

Our biggest hurdle right now is sleep.  For some reason, Kevin cannot settle himself down to sleep at night.  Although his body is fairly immobile, he uses his head and right hand to do his own version of "thrashing".  I sleep on the couch next to his bed so I can answer to his needs. Unfortunately, that has become a challenge I cannot meet. Kevin gets wild and crazy ideas in his head that I cannot change no matter how hard I try.

One night, he was desperately trying to line up the flaps on his blankets. What does that mean? I turn on the lights.  He is wide awake.  I show him the blankets...no flaps. Then he wants help with the lid on the silo. I give him drugs for anxiety and restlessness. The weirdness continues.  At one point, I crawled into bed beside him and started asking him questions about his childhood thinking it would take his mind off the current dilemma occupying his brain.  That lead to a 30 minute discussion on setting an alarm.  "I set the alarm.  It's okay. Just relax." "Did you set the alarm? We need the alarm set?" "Yes, dear. I set the alarm." And on and on and on.

All of these scenarios are mixed with moans from gas pains, requests for drinks of water, and complaints of an ache or pain that is there one minute and gone the next.

Another night Kevin hollered at me, "Kathy!" "What?!" "Come help me open this shed door," as he is pulling on the side railing of his bed.  "You are in your bed. It's okay. Go to sleep." A few minutes later he is plucking at his bedding and stating, "There is something wrong with the upholstery in this vehicle.  Help me get out of this car."  Still later he claims he is setting up the kitchen.  He needs buckets for the utensils.  I crawl in bed with him again and get the bright idea to ask for "a break." In our former life, if we were toiling away at a task, we would agree to "take a break" for a certain amount of time.  I would lounge on the couch and he in his recliner.  Since Kevin was hell-bent on setting up this kitchen, I decided we needed a break.  Every time his head started to toss or his right hand went up in the air, I would say, "Can we just have a little break? I could really use a break."  Eventually, about 4 am, it worked, he was sleeping. Success!

The following night, after yet another series of crazy adventures, I thought I would try my tactic again.  "I need a favor. Can we just have a little break?" Kevin retorts, "Break? I'm just here for a color test!" Sorry for the language...but what the hell??? Although these stories are humorous to me now, I don't find them funny at the time.  I stink as a nurse and my patience leaves everything to be desired even when I have a full night's sleep.  After multiple nights, with snatches of sleep here and there, I am pleading, "Just go to sleep!"  Thankfully, he remembers none of any of this in the morning.

Are we trying drugs?  Yes.  At times it was a guessing game. Other times I had a concrete plan from the hospice nurses of what to give at what times.  In all cases, haloperidol, lorazepam, morphine and sleeping pills have not worked. After talking with others, the lorazepam seems to have a history of causing hallucinations, so we no longer have that drug as an option.

Do I have help? Yes.  Others, especially Kailey, have offered to take my overnight shift.  My issue is that we don't have a set plan yet that works.  If I knew that Kevin gets this drug at this time and this one at another time, I could feel more comfortable letting someone step in.  As of now, it is still trial and error with the never ending hope that tonight's method will work.

Our biggest joy each day is our visitors.  People continue to take time away from their busy lives to schedule a visit with us.  For me, that would be a tough thing to do...what will I say? what will I do? what will I see? But so many of you are such good people that you don't let your fears cause hesitation and you reach out to us.  Thank you.

Kevin is ready to go. He doesn't want to live like this.  I am ready...that's a lie.  I continue to live day by day, afraid to look into the future.  It's just too scary without Kevin. But I know this is not the life he wants to lead and I am not cut out to patiently provide the kind of care he needs. God will decide the right time.

Throughout all of this, Kevin still retains his sense of humor.  He may not remember much or struggle to find a word, but then he will throw out a line that will have all of us chuckling.


Tonight I am thankful for:

• Medications that give me hope that tonight could be the night he sleeps through the night (or at least a couple of hours).
• Making Fettuccini Alfredo tonight with Kailey and following it with a glass of wine.
• Short term memories so there are no hard feeling for my impatience.
• Not having to go to work the next day after a night with no sleep. Not everyone has that luxury.
• My mammoth blanket (a huge brown furry blanket) that I curl up in to search for sleep, whether it be on the couch or Kevin's bed or the dining room floor.
• That my car has not had to leave the garage during these days of rain, ice and snow.
• Supportive family that we know will be there when we need them.
• Visits that include updates and stories and laughter.

"Therefore do not worry about tomorrow,

for tomorrow will worry about itself.

Each day has enough trouble of its own."

Matthew 6:34

"Praise be to the Lord, to God our Savior,

who daily bears our burdens."

Psalm 68:19

A Year of Learning

Although I've always believed in life-long learning, this past year has pushed my learning on a personal level more than I could have ever imagined. This post will be more about me, because I cannot speak for Kevin. But I have a hunch Kev would agree with me in most cases.

What I've Learned This Year

Medical care is not a spectator sport.  It requires listening, questioning, note taking, researching, and decision making.  We so rarely saw a doctor in the past that we just did what they said, without a real understanding of what was happening or asking any questions.  Please don't think I am speaking negatively of doctors. I have the utmost respect.  But I now know, after Kevin dealt with multiple professionals, that it is our job to be informed and make sure all involved know the complete story.

I have a lot of work to do when it comes to my faith. Church and prayer have always been a part of my life. However, this past year I've witnessed the strong conviction and practices of many people and I want to be more like them.  It was a step for me to include a Bible verse in each blog post. Unlike some of you, I don't have passages committed to memory nor can I easily access them in the Bible.  Instead, I have to research.  Someone said to me many months ago, "I didn't know you were so religious."  I replied honestly, "I'm not, but I'm trying to be better."

When push comes to shove, I can do things I had never thought about.  For someone who ALWAYS knew that anything medical was "not my thing", who would have thought I would be giving shots twice a day or helping a hospice nurse put in a catheter. (Okay, let's be real.  "Helping" meant handing her items, attaching a syringe, and holding Kevin's hand. But at least I wasn't hiding in the other room).  What at first turned my stomach to jelly becomes easier over time.  Realistically, what I think is a "big deal" for me, some people are doing day in and day out. I just need to buck up.  

Time for a little tangent...it bothers Kevin and I when people say we are strong.  We just don't get it. We are going through life a day at a time.  Yes, life is hard right now, but we aren't doing anything extraordinary.  We are doing what anyone else would do...put one foot in front of the other and keep moving. Our journey is more public than others because I write this blog, but please don't make us out to be any stronger than any one of you.

Work is work. Kevin and I have a strong work ethic. We rarely took days off or used our sick days.  I still value that trait but now realize there is more to life than work.  I'm trying to put family first.  Of course, I write "there is more to life than work" but I already know that in all likelihood I will be filling my life with work once I am alone. 

Live a little. Boy I have a long way to go on this one. I envy people who just go and do.  I worry about the logistics or the expense or the whatever. Thankfully, over the past year, people have helped us to go and do and make memories.  

You never know what people are going through. Okay, I  knew this on a surface level but never really felt it before.  People are getting up each day, putting a smile on their face, caring for their family, going to work and seemingly living a "normal" life.  But behind the scenes there may be so much more going on that none of us could even imagine.  What leaves me feeling guilty is that, through the years, friends, family, co-workers and neighbors have faced struggles and I did nothing to reach out because I really had no idea life could be so hard.  When you lead an easy life, it's hard to relate, but that shouldn't be an excuse. I should be compassionate enough to recognize hardship without having to live through it.

People are amazing. We still cannot wrap our head around how much people have done for us and continue to do for us.  Cards, letters, food, visits, kind words...it is incredible. On a regular basis we hear, "we pray for you every day." Every day. Wow. It is heartwarming for all of us to know Kevin has touched your life in a way that you want to reach out and help. Thank you.

Now that leaving the house is so difficult, we appreciate the visitors.  If you decide to stop by, please don't feel you need to bring anything.  We have plenty of food.  Your presence is enough.  

The things you have learned

and received and heard and seen in me, 

practice these things, 

and the God of peace will be with you.

Philippians 4:9