Use it while you got it!

Our good friends Jim & Debbie Zollinger and Greg & Sandy Bacon

Last Monday I was able to go to the MN state fair with our good friends the Zollingers and Bacons.  What a great time we had.  The whole purpose was to eat our way through the fair because really, I have to take advantage of the time I have with a functioning esophagus.  I remember when I first got this diagnosis that the things I would miss most were #1 family and friends and #2 food.  I have the physique I have not because I wasn't active but rather because I liked to eat a lot of food.  So unfortunately the swallowing mechanism is one of those things that goes.  At the beginning of the summer I had a feeding tube placed for the inevitable situation of me not being able to swallow.  So our motto now is "Use it while you got it!!!!!"  I personally think you can apply this logic to many things in life.  Not just swallowing but for us its all about the food.  Here are a few of the food pics from the Fair.  And yes we ate a lot.

Iron Range Pierogies from the new Blue Barn...YUM!

Always have to have corn on the cob!

Heavenly prime rib taco and lobster on a stick.

Funnel cake with half chocolate drizzle and half cream cheese frosting. Totally worth it.

Chocolate covered strawberries!

SHRIMP!

Chocolate shake...even better when you have a spoon of mint shake with it!

Olive on a stick!

Big pile of Gyro meat!

The sweet potato fries are clearly amazing.

The end.

Good lookin

So I get up this morning and somehow get ready to take a shower and get in.  After the shower I get out and my wife comes and gives me a woo-hoo whistle and tells me "wow look at the manly physique" (maybe at one point but not now.)  So after I roll my eyes at her and tell her thanks I have to ask her to help me dry off because the incredibly muscular guy in front of her can't lift the towel up past his waist.  I am married to the greatest woman in the world.  Oh and no picturses for this one because really, no one wants to see that.

Because of Him

Far more people have been reading this blog than I ever would have imagined. Writing about our experience is a bit cathartic. I have received so many kind messages of encouragement and love. There have also been many kind words about who we are, how we are handling this difficult trial and our strength.

If there is one thing I want people to take away from this blog it's that anything good you see from it has nothing to do with who we are, and everything to do with who Jesus Christ is.

It wasn't long into this process that I had a profound realization. We really have been OK. We are enjoying life and loving it in spite of the changes Jon is constantly experiencing and what we know lies ahead. One day I stopped and pondered how that could be. How can one face this kind of consuming, overwhelming trial, and be OK? Not just OK... great! We are living, laughing and enjoying life. The message that came to me was so powerful.

The atonement of Jesus Christ. 

Because of Him, we can have peace and joy in this life regardless of the challenges we face. Christ already suffered for the hard things Jon will face, so Jon doesn't have to suffer now. Christ has already born my grief and pain, so I don't have to feel them now. Christ did not take away our challenges and trials, but he suffered the heartache, so we don't have to. 

That's it. Any good that you see in us is possible because of the atonement of Jesus Christ. Any good that you feel is Because of Him.

Edit: I understand that some are not seeing the video in the post. Click here to see it!

Hard Conversations

When Jon was diagnosed, our kids were 5-14. We were grateful that Jon was so healthy so we could tell them and they could ease into reality.

What do you say to these sweet kids whose lives are going to be turned completely upside down? The truth.

One Sunday afternoon we sat our kids down and told them this:

Dad's brain isn't talking to his muscles anymore because the neurons are dying. When that happens, dad is going to get weaker and weaker.

That means that eventually dad won't be abel to walk anymore, and need a wheelchair because you need muscles to walk.

You use muscles to eat, so eventually dad won't be able to eat anymore and we'll feed him through a tube in his tummy.

You need muscles to move your arms, so we will need to help dad do things like get dressed, eat, brush his teeth and shave.

You also need muscles to breathe, so eventually dad won't be able to breathe anymore. He might use a machine to help him, or he might not.

Eventually, dad's body will stop working. He will die.

"I hope dad doesn't get sick for 15 years, that way Katie will be twenty."

It will probably happen before then.

"How will we know what daddy wants to eat when he can't talk anymore?

We will probably feed him through his tummy then.

"Mommy, we will have to go to daddy's funeral?"

One day we will, but that's not for a long time.

I expected our kids to struggle. I thought that they would be fine when we told them, but we might see them start to act out. Kids are amazing. Their faith is simple and pure. They understand (in their own way) what is happening, and they are OK with it. They just love their dad...regardless of what he can or can't do.

Since that day, they have seen a lot of changes in their dad. There are new things everyday that are hard or impossible for him to do on his own. There have been some turning points where they've been forced to see reality. They are still OK. In fact, they are thriving.

#IceBucketChallenge

It's all fun and games until YOU get the challenge!

For a disease that affects so few people, awareness = resources to support those living with ALS, and to find a cure.

The ALS association of Minnesota has already provided Jon with important support...some little and some big. When it became difficult to put his shoes on, they gave him elastic shoe laces to make it easier. They realized immediately that Jon's speech would be affected early in the course of the disease, so they provided an iPad for him to use to communicate (which is what he uses to write all of his awesome blog posts!). When we mentioned that he was having a difficult time getting off the couch, a lift chair was in our living room 2 days later. This organization is providing real, meaningful support to people living with ALS.

SO I CHALLENGE YOU!! Friends, family, and random readers of this blog to DO the Ice Bucket Challenge! And when you do, make a donation to the ALS Association of Minnesota. As it turns out, this blog is getting far more views than I ever would have imagined. Go now. If all of you give just $5, we will raise thousands!

And I especially call out a couple of good friends. Fox News Contributor Pete Hegseth...consider yourself challenged! Minnesota Republican Leader Kurt Daudt...you're up!

Just don't forget to contribute to this worthy cause. And thank you for all the support you are giving us through your kindness, prayers, actions and words.

Click here to donate!

What we need

As I go through my day I am always reminded about how little I truly need.  Before ALS I always felt like I needed so many things.  I wanted the big TV, I wanted the nice couch, I wanted big table that would fit 12 people around it (because I like to party), and I wanted to go to the nice restaurants (Frankly I still want that).  I wanted a lot of things.  

Thankfully I have Anne.  She and I worked well together.  Every time I wanted something over 20 bucks I would always go through her and see what she thought about it.  Usually around that time I would reconsider what I really needed, realize what I wanted was a bad idea and come to the conclusion that I could wait a while longer.  All this without even having to talk to Anne sometimes.

Now my needs are definitely different today than they were a year ago.  I don''t get around as much as I used to and I am constantly learning how to do things differently.  Things change.  And I have always believed a healthy dose of change is important to everyone. As I go through my day I am amazed at what seems important in life.  Well amazed may be a strong word.  I actually always knew what I needed but now I can focus on what is really important and work on that.  

I know what your thinking, family is what is important and I would agree with you to a small degree.  I feel that family is one of the most important things, however if we only focus on our family we are missing a lot of what life is truly about.

What I really need is to give service.  I know that sounds corny but really as I examine the most important times in my life it wasn't about the job, the house, the car that made any difference.  It was about what I did with my time.  It as about what I did at work, who I drove around in my car and what I used my house for. 

I had some really good role models with this when I was young.  My mom and dad showed me what service was all about.  My dad brought me all over the place helping and serving members of our church on a monthly basis (usually against my will but I am okay with that) and my mom didn't know how to go through a day without helping someone or everyone around her.  It was just life, it was how things were done.  It wasn't complicated, we never expected anything in return, we were just grateful to have friends that we could share our time with and we usually got more out of it than the person being served.  

So let me say that service is a good thing.  There is a scripture in the Book of Mormon that simply states, "When you are in the service of your fellow beings, you are only in the service of your God."  I love that scripture because really all I need is to serve.  Anne sometimes complains that I am too much of a pleaser as I try to make everyone around me happy.  I can get into trouble at times with that and need to learn some discretion in what I commit myself to but all in all I think that service is fantastic.  

My days now are different than they were before and again I find that what I need is totally different.  I am learning new ways to move around, and new ways to serve.  I am also learning to be served.  About 15 years ago my grandfather passed away and my family went back to NJ for the funeral.  While there my mom who lived in Utah at the time went into work mode and just made things happen. The gals at church were a little miffed at her. "Clara you can't do all this yourself!!" is what they said.  When my mom assured them that she could could they said "You don't understand.  We need to serve you right now.  You are our friend and we need to help!"  

For me it was an amazingly powerful lesson that we need to learn to serve with everything we have but we also need to be humble enough to let other's serve you.

Now I don't bring this up because I want or need anything.  In fact we are doing fine and when we are in need of something we can't provide or need help with we are getting good at asking (well sometimes we are).  What I have found that really makes the difference for me starts with my family of course.  My llittle girls are very sweet and throughout the day they will come up to me, give me a kiss on the cheek and say "Hi".  I find that little bit of kindness is about all I need to make it through the day.  Now if you have a beard or need to shave please attempt to refrain from giving me a kiss on the cheek, or really even to much bodily contact (I may fall down).  But I have found that all I truly need is what my little girls give me on a daily basis.  Oh that and a good foot rub.

Something's Gotta Give

Bitsy turned 11!

My third child, and oldest daughter turned 11 last week. She is amazing. I'll talk more about how she came into this world in another post, but this girl is a miracle child. Literally. She is the kindest, most energetic, curious, sharp, wonderful daughter. Such a blessing.

With Bitsy's 11th birthday, I have officially celebrated 52 birthdays with my children. WOAH, that makes me seem old! In all those birthdays, this was only the second time that I have purchased a cake. I know it seems a small thing, but I've always baked a cake myself. I think there is something nurturing about doing these little things for our kids.

Life has changed. Jon quit working this spring and I started. I'm blessed with a job that I love, but it is still busy. Between work, activities and Jon needing some extra help at home, something's gotta give.

Every six months there is a General Conference of the Church of Jesus Christ of Latter-Day Saints. In the April conference, Linda Reeves reminded me of what really matters, "It is OK if the house is a mess and the children are still in their pajamas and some responsibilities are left undone. The only things that really need to be accomplished in the home are daily scripture study and prayer and weekly family home evening."

That's it. It's ok if my kids get a store bought birthday cake. We pray together every day. We read scriptures together. We spend time together. That's all that matters. Homemade birthday cakes (and a clean house) may be a thing of the past for now, because something's gotta give. And I'm ok with that.

At least I added the flowers and her name!

Signing up for Electrocution.

What you need to know is that ALS is a diagnosis made through exemption.  They test you for everything in hopes that something else will pop up, thereby saying you don't have ALS (Yeah!!!!).  As we started going through this we quickly realized that there are only a few diseases that I could have based on the symptoms I was presenting.  On the list was lymes disease, AIDS, and a few neurological diseases. I would tell you what they were but to be honest I forgot the names and quite frankly only people who have those issues actually know what the names are and what they do.

Let me say it is a crazy, mixed up world when you are praying for AIDS. Actually we were praying for Lymes disease, but since that came back negative we thought the next best thing would be AIDS.  Because really who wouldn't want that?

So the tests start.... First is lots of blood tests but they are boring so second is the MRI's.  I got to do a head and neck MRI as well as a thoracic MRI in hopes that they would find some irregularity with my nervous system that would tell them why I was having the symptoms I was having.  Many of you have probably been through an MRI, but if you haven't, the lovely hospital workers place you in a very tight tube and tell you not to move.  You have an IV that they use to put dye into you so they can see how blood flows throughout your body and probably other things that I don't know about.  I was lucky enough to get all my MRI's done at the same time which means double the time.  

I will let you in on a little secret.  The older I get the more I hate small enclosed spaces. And staying in them for prolonged times is not fun.  I had to close my eyes, attempt to relax in a tube that was barely big enough that it allowed me to barely raise my hand to scratch my nose (no I was not picking it).  Did I mention before that I don't like small spaces?  Gone are the days when I like liked spelunking.  Probably because I got a bit overweight (I never say obese) and when you get bigger you can't get into the tight spaces anymore and moving around also gets a bit harder.  Actually  what I really wanted was some versed (relaxing medicine) placed in my IV.  I mean why have an IV if they can't at least make you feel better about being in a tight enclosed space.  This did not happen and they kept me in the MRI for about 2 hours.  Fun times, let me tell you.

Well the MRI's came back normal  (Bummer!!!!) so it was on to the next test.  What they told me is that the Cadillac test for diagnosing ALS is called an EMG.  An EMG is a nerve conduction test that tests the speed and strength it takes for signals to go from one part of the body to another.

Basically, they electrocute you.  A lot!!!!!!!!

You may think I am exaggerating, but really they take a couple of pads which they place on your body and the they take a long needle, stick it into your body, then pulse your body with electricity to determine how long it takes your nerves to process the pulse of electricity from one spot to another.  All I knew was that  it caused the sensation of "PAIN".  They continued to probe and prod until at last they came to my tounge area, where they stuck me with a long needle under my chin into my tongue area and then buzzed me.  I was okay with the legs, arms, torso, back, and neck area (well not okay but I was trying to be manly in front of my wife)  but when they hit the tounge area my boddy came off the cart and there may be a hand print permenantly embedded into the rail on the cart  (at least I didn't scream like a little girl...I think).  (Note from Anne: there was a lot of moaning and grunting, not so much screaming.) I have had lots of different tests done in my life and this one by far was the worst one.   By this time I didn't care if I had ALS or not I just wanted the tests to be over.

After about an hour of electrocuting me they finally let me alone and told Anne and I that ALS was the most likely diagnosis as all the signs were pointing that way.

So after a month of testing and prodding they finally were able to definitively say that I have ALS.  I think I am making this sound much worse than it actually was.  But then again maybe I am not.  

I am not writing this to make you feel sorry for me because I am certain that there are lots of tests that are performed that quite frankly hurt a lot.  I haven't experienced those myself and coming from a nurse who worked in an OR, we at least thought it humane to give the patient anesthesia.  The reality is that we were grateful just to have an answer to what was happening.  I just wish they didn't have to course electricity through my body to get the answer.

Life's not fair.

Jon and Abby riding the chair lift for the alpine slide in Park City, Utah

After google did its dirty work, we set up a time to chat with our brother in law, who conveniently happens to be a neurologist. Dustin was quick to say that there were most definitely other possible diagnoses, but that there was a good chance ALS would be confirmed.

As you can imagine, we were in a bit of an emotional spiral. Have you ever had that feeling where you just feel completely hollow? Like there's nothing left inside of you? A feeling of complete despair? That was the feeling I had that night. It was consuming. I hardly slept (and I know Jon did the same).

How could this possibly be happening? We knew a little about the disease. We knew that there were few diseases more difficult to live through. We knew that the disease has an end. Is this even real life?

When I woke up in the morning, everything changed. That night would be the last night in almost a year that I have felt despair. God gave me one night. He knew that's all I would need.

[Side bar. a few years ago my firned Debbie told me that her husband, Big Jim, would always tell his children that they should be grateful that life isn't fair. I immediately started using this with my own kids...one in particular who shall not be named, but may or may not be pictured in this post. Every time they complained that life (or "that's") not fair, I would respond with,"You're right. And aren't you grateful life isn't fair? If life were fair, you wouldn't have a full belly. If life were fair, you wouldn't have a mom and a dad who both loved you and were there for you. If life were fair, you wouldn't have a nice home, clothes on your back and everything you need." And so on... you get the idea. It worked. My kids stopped complaining that life wasn't fair (mostly), and would even tell me how they were grateful for that! Side bar done.]

I woke up that morning and the only thing I could think was,"Life isn't fair, and I'm so grateful."

If life were fair, I wouldn't have been blessed with the most amazing husband, who makes me the best me. We love each other, respect each other, laugh together and dream together. There is no place either of us would rather be, than with each other. Unless there's a BYU football game on. Jon might rather be there.

If life were fair, We wouldn't have five amazing kids who we love and who love us.

If life were fair, we wouldn't be surrounded...completely engulfed...by the most supportive, incredible family members and friends imaginable.

If life were fair, we wouldn't have the gospel of Jesus Christ, and know that this life is just a spec in time. We will be together again.

Life's not fair. I am so grateful.

The Lazy River

So I am not sure if everyone knows what ALS does so I will give you an example of what it does.  The kids and I are spending a day at the Wisconsin Dells and being the superb dad that I am I try and go swimming briefly and maybe see if the lazy river can be lazy enough for me.  So what happens with ALS is that your muscles slowly atrophy until they are gone.  So on a daily basis I am adapting to ne things that I can't do or need to do differently because the muscles I used previously don't exist anymore.  So anyway I decide to go in the Lazy River with my sister becuase the Lazy River is supposed to be, you know, "Lazy".  I get into the water and immediately notice the water current is actually quite strong and starts pulling me in quicker than I want to go.  Then Sharon helps me put a tube over my head because I can't actually lift one anymore over my head.  Then with a tube and quick current I put my arms (with difficulty) on the tube and cast off.  I immediately realized that this might not have been the best idea.  The current took my legs out from under me and I had to support my body on the tube with my arms which by now are not very strong.  So I manage to get up a bit and turn my tube so I can use my legs to stop my forward progresssion and readjust on the tube.  I do that and get going again.  Before long the current gets my legs out again and I start hanging on to the tube with my head because my arms are clearly not doing the job.  I spot an entrance not far off an decide to make my way over but I am no match for the tremendous current of the Lazy River so I do what any normal person does.  Ditch the tube, bring my legs under me, grab for a side and pull myself up.  Sharon realizing I was in mortal danger swims over and gives me a little help.  So after a fantastic rescue from Sharon and Ben we get out and I am thinking to myself that I need to rename the Lazy Rive to something more fitting for me, like the "River of Death".  Anyway I have decided that this is one excersize that I may not do again.  I am adding it to the list of other activities I have given up like skydiving, waterskiing, and running marathons (actually lets be real just running, or walking fast actually).  So anyway thats life in the ALS lane.  Never a dull moment.