Top Ten ways I am perfect for Holloween

#10.  I can drool on command at anytime.  And I can drool without commands as well.

#9. I walk with a limp that makes it seem like I have a peg leg.  I have trouble catching my kids at anything now because they always know when I am coming to check on them.

#8.  I slur many of my words  which freaks out the little kids. And older kids. And me.  If I get pulled over by a cop I am sure to be asked to do a sobriety test. Actually I don't think I freak them out as much as they just don't know how to take me.  The little kids look at me with blank expressions on their faces.

#7.  I can watch Charlie Brown and the great pumpkin all by myself.  I actually hate scary movies and dont sleep well when I watch them.  I watched 10 minutes of constantine on TV last night and promptly had to turn it off because it was a bit too scary. (I do like Sleepy Hollow though).

#6.  I walk very slowly which is kindof creepy if I am following you. 

#5.  My arms only come up to my shoulders now making my movements look like a t-rex.  To some it may seem I look  a little zombie like.

#4.  I think having a motorized wheelchair makes costumes way more exciting.  Think of it,  I can be the horse with night sitting on the back.  I can be a get-away car.  I can be a runaway stage coach. Oh the possibilities.

#3.I have a feeding tube that I can always pull out that will scare the dickens out of just about anyone.  Again maybe not scary. Just wierd. 

#2.  I don't do much cleaning anymore (I make my kids do it) so I am sure to spot more cobwebs around the house.

#1. When I yell I can't help but spit a lot.  I am sure i look quite insane when I do that.  Probably the only reason the kids still get chores done.

A new milestone

So I hit a new milestone yesterday. My seven year old daughter was getting ready for bed when she asked to play thumb war.  You know one, two, three, four, I declare a thumb war. Now you have to know If you are gonna beat me then you are going to feel good about it afterwards because for some reason I have no idea how to throw a game.    

I am sad to say I lost. And not on purpose. I was whipped soundly by my cute and adorable seven year old.

Luckily I can still beat her at chess. Granted she isn't sure how all the pieces move. 

Bring it.

I've been thinking a lot about the young woman who has chosen to end her life  due to terminal cancer. Perhaps you've seen her story? My heart breaks for her and her family. She is far too young to say goodbye.

But my heart breaks for her family in another way as well. I'm so sad that they won't get the opportunity to care for her, serve her and love her through her illness....and that she won't get to experience that kind of love.

I am so grateful for the time my kids and I get to have with Jon. I'm so excited that my children will experience and give Christ-like service in a way most children do not have the opportunity to give. My heart is so full of love when I think of taking care of Jon in the way that he deserves to be cared for. I am so grateful for the many lessons we will learn (and are learning) through this process... humility, strength, faith, gratitude... the list could go on and on. I am so grateful that while Jon's body fails him, his heart and his love will not fail my sweet family.

I am so grateful that we will experience the fullness of whatever God gives us.

What we know... or don't know.

On Thursday, Jon and I were able to attend a research forum on ALS with some top ALS researchers from around the country. The format was loose - all question and answer - but interesting. Mostly, they confirmed what we already knew... that they don't know anything. But here are the things I found interesting.

1. The only treatment for ALS, Riluzole, was discovered in the 90's and extends life expectancy by an average of a few months. Jon has been taking this since last summer. 
2. The ALS community of researchers is getting close to discovering the cause of ALS in a small percentage of patients. For the other 95%, they still have no idea.
3. Researchers are very focused on better shared databases to expedite research and get better, faster results. 
4. The most promising potential treatments for ALS in the short term are linked to irregular protein clumps that are present in ALS patients. There haven't been any human trials yet, so this is probably still pretty far off.
5. There is a study starting at Mayo soon that Jon signed up for months ago. They have way more people signed up than they have slots for...pray that Jon can participate, please! It is a stem cell trial wherein they take the patient's own tissue, manipulate it and inject it into the spinal fluid. That may not be quite right, but close. 

So, the moral of the story is, researchers really don't have any more answers or treatments than they did 20 years ago. But they're getting closer? Let's hope that Ice Bucket Challenge pays off!

I Can Do Hard Things

Superior Hiking Trail, fall 2013. 

Last weekend, my backpacking friends were on the Superior Hiking Trail without me. This makes me terribly sad, but it just didn't work this year. We go every year and are working our way along the trail from Two Harbors to Canada. The SHT is my happy place.

We always go in the fall and try to time our trip for the fall colors. Clearly, last year we hit the jackpot.

I LOVE backpacking but it is definitely hard work. The trail is rugged, uneven and has pretty significant peaks and valleys. I know, I know. It's not the mountains, but I promise it is tough! It is while I am working on those ascents that I have to focus and encourage myself. It's where I learn so much about myself.

Most importantly, I can do hard things.

That's my mantra, both on the trail and in life. I can do hard things. God has made me strong. Capable.  Powerful. Brave. I can do hard things.

And the reward is always worth it.

*Photo credit to all my backpacking buddies...I'm not willing to carry the extra weight! ;-)

Jon's Giant Noggin

Jon's neck muscles are getting weaker. He will be getting a neck brace in the near future. For now, this is how he feels. Click HERE if you aren't able to see the video.

A Charmed Life

Abigail working on a little math. I love the dress code for homeschooling.

Science experiment. It turns out, that layer of blubber on whales definitely keeps them warm in cold water!

I've lived a charmed life as an adult. 

As a homeschool mom, my kids and I spent our days learning together, playing, going on adventures, and basically doing whatever we wanted. Of course it wasn't all roses, and I didn't appreciate it as much as I should have, but it was exactly the life we chose to have - and we loved it.

Jon spent much of our marriage getting more education. He started out as an LPN, got an associate nursing degree, then a bachelors degree in nursing, and finally a masters degree in business administration. He loved working hard and never complained about it. He loved being a nurse and especially enjoyed being a manager....loving the people and wanting to help them become their best selves.

It was a charmed life, indeed.

We've reversed roles now. I've gone to work full time and Jon is homeschooling our kids. The reality is, given the circumstances, life probably couldn't get much better. Jon gets to spend his days with our kids - and he is so great about getting stuff done AND playing. I have a job that I genuinely love and believe in. We are both surrounded by great people.

But I miss it. I miss being cuddled up on the couch reading with my kids. I miss going to the zoo, the children's museum (always accompanied by a trip to Candyland), and on hikes with my kids. I actually miss cooking dinner for my family (I know - I'm as surprised as you are). I miss sewing and working on projects around the house. 

Jon is an amazing stay at home dad, but I know he misses his former life too. About a month before he retired, he was offered a position as a director of a new surgical center. He would get to build it from the ground up. The management position he'd been waiting for for years had also just opened up  10 minutes from home. All those years of more education and working hard were going to pay off.

I think I haven't been posting a lot lately, because these are the kinds of things I think of. And, more than anything, I want this blog to be uplifting. I want you to know that in spite of these hard things, we really are doing well...REALLY well. We are happy. We laugh all the time. Our kids are thriving. But reality is still reality. It's not what we chose. I hope that this blog is still uplifting, but perhaps you'll allow me the indulgence of just being real sometimes as well. 

Words Matter

A random picture of Jon from the State Fair, 2013. It has nothing to do with this post.

Muscle cramps are an unfortunate symptom of ALS. As the brain has difficulty talking to the muscles, they kind of go crazy... cramping and twitching. Weird muscles. Like Jon has to be very careful how he bends or he gets a wicked cramp in his stomach.

Our family was in the car Saturday night when Jack mentioned that he hates the sound of velcro coming apart. A nails on the chalk board kind of thing.

I added that I hate the thought of chewing on cotton balls. It gives my the willies as I type. Jon agreed and just the thought of it made his jaw cramp! Who knew my words would ever have such power?!?

Note: Jack just looked at the photo and said, "Yep, that's definitely from a year ago. He's holding his arm up!" Then we all laughed, 'cause that's how we roll.

Happiness

Jon with Abby and Katie on one of our favorite Utah hikes... Adam's Canyon. Summer of 2012.

Yesterday was our annual church picnic and canoe trip down the St. Croix River. We love this day. We typically spend a lot of time outdoors - Canoeing, camping, Boundary Waters, backpacking, hiking, etc. Today was one of the rare occasions we really felt sad. A sense of loss about not being able to be on the river.

Jon just isn't stable enough to get into the canoe, doesn't have the strength to paddle, and couldn't handle sitting on a canoe seat for any period of time. So this morning we sent our 2 boys along with our two canoes for a morning on the river. We arrived and talked about how high the water is...longingly. The St. Croix is moving fast. It would have been a fun trip.

Here's the hard truth. I'm not grateful that Jon has ALS. But I don't believe we need to be grateful FOR our trials, we need to be grateful IN our trials. Our happiness can't hinge on our circumstances. We can choose to live at the mercy of what happens to us, or we can choose to live a life of happiness.

Sometimes we feel sad. It doesn't change the fact that we choose to be happy.

Watch this for great perspective on gratitude. Click here if you can't see the video!

A Little Reality

Every 3 months, Jon has an appointment with the ALS clinic at Hennepin County Medical Center. This clinic has figured out the right way of caring for people with ALS.

When Jon has an appointment they put us in a room and every practitioner imaginable comes right to us. The neurologist, respiratory therapist, occupational therapist, speech therapist, dietician, ALS association representative, social worker… and I know I’m missing some! Imagine what it would mean if this was not the case. The number of individual appointments Jon would have to make and get to each month. The driving, waiting and scheduling would be a complete nightmare. Life would be consumed by appointments.

Not only do they make it easy to receive care, the people are wonderful. And since it’s Jon, we spend most of our time laughing and having a good time!

Jon had his 5^th appointment last week. He is a full year into his diagnosis, so I thought I would give you an idea of some of the changes that have happened over the last year.

Last August, Jon’s speech was slurred enough to notice, but he was completely understandable. This August he is often asked to repeat himself.

Last August, Jon was feeling a little weak, but was still able to do almost anything. For example, I remember that it wore him out, but he was able to run the chain saw and pull some major growth out of our pond. This August, Jon has a very difficult time doing anything with his arms. Washing his own hair is a challenge, he uses both hands to get a drink, and uses a straw because it is difficult to get the glass to his mouth. To clean his ears with a q-tip in the morning, he needs both hands to have the strength to keep his arms up that long… you know…like five seconds.

In February, our family  went to Disney World (which really is the happiest place on earth, as it turns out). Jon walked around without any trouble from morning until night. We didn’t waste time! OK, he was tired at the end of the day but we all were. Now Jon uses a wheel chair if he is doing anything more than walking into a building.

Last summer, Jon would get a little more winded than usual when exerting himself. This summer, Jon started using a BiPAP machine to help breathe while sleeping at night. He gets quite winded walking upstairs and has a hard time breathing while lying on his back.

Last August, while Jon was already weaker, he had good muscle control. He could stand on tiptoes with both feet. Now he can’t get up on his toes, and can’t even lift the toes on his left foot.

A year, Jon had zero issues with eating and swallowing. At this point swallowing is taking effort and he has a tough time moving food around his mouth. This summer, he had a feeding tube installed (that is seriously the only word I can think of. I recognize that it sounds like he is a car, instead of a person). He doesn’t use it yet, but the surgery was less risky now than it will be later.

Last August, Jon was managing the operating room at one of the biggest hospitals in the state. Last spring he left work to be home with our kids. This a total benefit of ALS, by the way. There aren’t many of those, but this is definitely one of them!

When I stop and think about these things, there have been some big changes. But that’s what they are…changes. To his body. Jon is still the guy he’s always been. We laugh all the time. We talk about our day and what we want to do with our lives. He yells at our kids. (He also plays with, teaches and loves our kids.)  He reads books, we watch movies, we hang out with friends… We totally love our lives.

Earlier this week he randomly told me that he feels totally normal…until he tries to move. Yep, ALS is tough. But life is still pretty great.

Perhaps most importably, Jon can still dress like this. Yes, he is THAT ridiculous.

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.

But Seriously. In the Beginning...

In the midst of a water fight, summer 2013

In January or Febuary of 2013, I started noticing that Jon was mumbling just a bit. I thought he was being a bit lazy, and it bugged me. Over the next few months it got progressively worse and he was really slurring his speech. He had some dental work done, and it seemed reasonable that there was some mild nerve issue that would get better, so we continued to ignore it.

Finally, on Independence Day last summer a good friend, who happens to be an ER nurse, pulled me aside to ask if Jon had had a stroke. OK. Clearly it was time to look further into what was going on. To this point, Jon’s speech had been on our minds, but we weren’t worried about it.

(Perhaps I should say ‘I’ instead of ‘we.’ Jon will likely contribute his own thoughts to this blog.)

So one day Jon went to work and tried to make an appointment with the neurology clinic.  Hilarity ensued. When he told the clinic his symptoms, they insisted he go the ER IMMEDIATELY. Jon, of course, had some meetings to go to and some things to check on first. Finally the Neurology clinic called the ER, who called Jon’s boss, who called him and asked, “Do you want me to come and walk down to the ER with you, or do you want me to meet you there?” He went to the ER.

The good news is that this process fast tracked things like an MRI. The bad news was that everything looked good… a stroke really would have been preferable to the final diagnosis! :-)

The next step was an actual appointment at the neurology clinic. This is where Jon was made aware of some things that he hadn’t even realized. Muscle weakness on the left side. Muscle twitching. Muscle cramps. And, of course, the slurred speech.

The neurologist didn’t give any indication of what he thought might be going on, but google was super effective at delivering the bad news. Go ahead. Throw those symptoms in google. ALS is the first thing that pops up.

ALS. Lou Gehrig’s Disease.

Jon needed some more tests, but the blow had been delivered.

The story doesn’t end there, but that is where this blog (finally) starts. From the beginning we have felt like this story isn’t ours alone. This is a journey that we are supposed to share. With family, friends, each other, and maybe you.

I have no idea how long this blog will last, how often we’ll post, or who will contribute. But if you want to follow along, consider this your invitation. We live our lives as an open book, and this is our story.