Tuesday, December 20, 2011

Home for the Holidays

Erik and I were talking the other day and he asked what he got for his first Christmas and I told him he got a trip to Mexico.  

Dec. 2002 - Erik (left) and his cousin Wakely
 That year we had driven to Mazatlan, camped with a big group of family/friends by the beach (in trailers, motorhomes, tents), and played.   Santa didn’t come looking for us there as the trip was the Christmas present.  We don’t go every year but Erik has now been 5 times and it is a memory packed tradition!

Dec. 2008 - again Erik (left) and Wakely (well, part of him)

This year we are home for the holidays.   It has been nice.   Drinking mugs of hot cocoa, baking candied pecans in the oven, playing games, going on drives to look at the lights and listening to Christmas music. 

But, yesterday Jeff checked the weather in Mazatlan (just because) and today I heard him whistling the song “Feliz Navidad.” 

Merry Christmas!

Here is one of my favorites from allrecipes.com:

Pecan Snack
By: Bea Description: Supporting Member (Click to learn more about Supporting Membership)
"These smell like a walk through a county fair, and they taste heavenly!"

·         1 egg white
·         1 tablespoon water
·         1 pound pecans
·         3/4 cup white sugar
·         1 teaspoon ground cinnamon
·         1 teaspoon salt
1.     Preheat oven to 250 degrees F (120 degrees C).
2.     In a large bowl, beat egg white with water until frothy. Stir in pecans and mix to coat. Combine sugar, cinnamon and salt and stir into pecan mixture. Spread on a baking sheet.

3.     Bake in preheated oven 1 hour, stirring every 15 minutes. Store in an airtight container.

Tuesday, December 13, 2011

December happenings

Alright, I’ve been thinking about the bit in the last post:
“And then I can move on, because let’s be honest, constantly thinking about your problems can be all consuming and gets tiresome.”

Once again I have stumbled across an “easier said than done.”

Way to go Janae! (high-five)

I’ll be honest, I’ve been thinking a lot about my voice. Twice last week I was at gatherings where there were quite a few people and it was noisy. I could not project my voice, had an extra difficult time enunciating words, and knew it was hard for others to understand everything being said. I finally gave up and sat back to just watch and listen. I enjoyed being in the company of wonderful people and eating tasty food but afterwards I felt like crying.

What are my options? Becoming a recluse isn’t an option. Or at least it is not my first choice. At clinic we have briefly discussed various programs and devices to aid communication. It is amazing what is out there. But I can feel my irritation growing...let's move on!

So, then on Friday I headed back out. This time with Jeff to his work party then on Sunday we went to the L. family Christmas party (51 people!) and chatted and had a good time at both. I’d really like my voice normal but apparently need to adjust expectations for myself…this is going to be hard.


I can hardly believe we are 12 days away from Christmas!

My Christmas hope is that everyone can feel the love of God in their life. My dose today came via a kiss goodbye from Jeff, a hug from Claire and Megan, and when Erik forgave me after a less-than-stellar-mom-moment. A kiss, a hug, and forgiveness make good gifts.

My bambinos in December 2007

Tuesday, November 29, 2011


In October I gave a recap of September. Now that November is almost over, here is the October update. I am rolling a month late.

The big addition in October was building a ramp in our garage to make the house to garage transition more walker friendly. Grrr.

I might be grumbling about needing the ramp, but I would be downright ungrateful to not acknowledge how quickly it came together. In one evening with the help and expertise of Stuart, Travis, Lee, and Bill it was mostly completed. Then Russ helped Jeff hang the hand rail, and my dad applied a textured paint to the ramp surface for grip. Wha-laa. We now have a one car garage with leftover parking for bikes and that ramp. We owe many MANY thanks.


The other night after brushing my teeth I leaned in to study my reflection in the mirror.

A grey hair.

What the... (Oh well, I am 35 you know.)

A zit.

Really? (Yep.)

Some sun damage.

Inevitable. (Bound to happen. I spent hours, days and years outside with minimal sunscreen.)

Those things really don’t bother me too much. What does concern me as I look in the mirror is how the right corner of my mouth is slower to respond than the left. My smile is now uneven.

My reaction to the smile thing is:
What the...

But of course I’m sad about another part of me being taken away.

And so I pray. Prayer helps me to work through the grieving, the anger, it comforts me to know that I’m talking to my Heavenly Father (someone who truly understands), which calms me so I can sort through the situation. And then I can move on, because let’s be honest, constantly thinking about your problems can be all consuming and gets tiresome. Some things require more time for healing than others.

I think I may have over simplified it with that explanation. But then again, maybe not, life doesn’t always need to be as complicated as we make it out to be.


Happy Thanksgiving. (Hooray! I now consider myself caught up with November since Thanksgiving happened this month AND I mentioned it in this post.)

Tuesday, October 18, 2011

September photos

I am a month late posting these photos but oh well.

The first Saturday of September we went to Cache Valley to watch some of our friends participate in the "Mud Run." It is a 5k obstacle course run through the mud and it looked like so much fun! There was also a kids course.


After (With my cute grandparents in the background.)

Here is also the annual post where I talk about the monarch caterpillar-turning-into-a-butterfly. The kids found 3 caterpillars this year. It's just that we are always amazed by the transformation process...even though it is the same thing year after year. Somewhat similar to the magic trick that never gets old.


Hooray for warm fall days.


Our Garden. Jeff planted a few giant pumpkin seeds and we let the vines go crazy. I thought the BIG leaves were a fun visual addition to the yard. September is when we pick our raspberries. Yum.

Wednesday, September 28, 2011

Look who is on SURVIVOR

Our friend, Dawn, is on the tv show Survivor!
It airs Wednesday nights on CBS @ 7pm tonight is episode 3.
Go Dawn! We are cheering for you!
Her blog is fun/funny/inspiring. Check it out:

Monday, September 26, 2011

The good with the bad and ugly – it’s a package deal.

Let’s start with the ugly.

For those who may not know, I was diagnosed with als (aka. Lou Gehrig’s Disease) in June 2008. Previous to that I was a healthy and physically active individual.

Amyotrophic lateral sclerosis (ALS is a progressive neurodegenerative disease that attacks motor neurons in the brain (upper motor neurons) and spinal cord (lower motor neurons) and affects muscle function. The motor neurons control voluntary muscles like the diaphragm, chewing, swallowing, speaking, arm and leg movement etc. Associated with the loss functioning motor neurons in ALS, is that various muscles cells waste away (atrophy), resulting in increased muscle weakness and eventual paralysis.

Upper body: Very weak. I have not washed my own hair in over a year. I now have 12 inch dreadlocks which aren’t so bad. Just kidding (only about the dreadlocks part). There are friends that come over and wash it in the kitchen sink for me. I cannot change my shirt or put on a coat by myself. I have not been able to drive a car since early January 2011.

Hands: Fingers are starting to curl. I try to straighten them out as much as possible on my own. At one point I had some custom braces made which I planned on wearing at night. They were uncomfortable and I felt like my hands were flippers. While wearing them it was impossible to brush hair out of my face or pull up my covers.

Breathing: My respiratory function is at 94. This is great and better than some ‘healthy’ people. But a nasty cold virus did result in me not being able to breath and I did have an ER visit.

Eating: I can feed myself and chew and swallow. The difficulty lies in lifting the food to my mouth; it is an awkward and tiring process. For that reason Dr. Bromberg wants me to get a food tube. He refers to it as a ‘tool.’ I could still continue to eat normally but if I was too tired to eat I could pour in a can of calories and nutrients to sustain me. Appetizing! Not really!! I’m not ready for that yet. But I would like to gain weight.

Speaking: Due to atrophy in my tongue my speech is slow, some words are difficult to enunciate and my voice is starting to sound different.

Lower body: I can walk, but in the house I use a walker for stability. In the neighborhood you will see me pushing around that stupid stroller. There has been enough tripping and falling that it is much safer this way. We went on a few longer outings this summer as a family where I knew that if I was going to be involved I would need to be in a wheelchair. So I rode.

Consider this as just an update. I'm not looking for pity, or the sad smiles, or multi-level-marketing berry juices.

No thanks.

What I do look for is how a person handles the bad, ugly, or the challenging circumstances in their own life. Everyone has something. Everyone. I look around and am inspired by the strength, drive, ability to adapt, faith and peace of others.

The good. @ the park (dreadlocks free) with Claire-bear.

There is so much that is good and beautiful mixed in with the bad. It is a package deal.

My goal is to try to pause and and be present in the moment. There is the potential for a million little moments that make each day worth it.

Now that I have said it, the trick is to live it ;-)

Wednesday, August 17, 2011

Cecret Lake

I don't want to scare you but today is August 17.

Which means we are already over 1/2 through the month...

Which means we are fast approaching the end of summer...

Which means the last place I want to be is indoors in a dull climate controlled environment.

I want to enjoy the sun, sky, warm breezes, and the green as much as possible. Last week Jeff and I went on a mid-week date to see the wildflowers in Little Cottonwood Canyon. They were beau-ti-ful! They are going to be strong for the next week or two, and we will have to drive up again and bring Erik/Claire/Megan.

We didn't do the hike but it is a family friendly trail.

My boyfriend. For some reason his braces make me feel young too. (They come off in November.)

Just on the drive up I counted 15+ types of wildflowers from the car.

Saturday, August 6, 2011

Pony ride

Last month my parents called up a friend and asked if they could bring their grandchildren over to ride his pony. He said he was just leaving but they were welcome to saddle up Sugar and borrow her for the day. Having a pony for a day was a little bit of heaven for the kids. (And Sugar was kind enough to tolerate them too.)

Megan was convinced they really could be best friends.

Friday, July 22, 2011


The summer Erik was 5 is when he really started to get into fishing and he was always asking Jeff to take him. They had gone out twice and gotten skunked twice. Nothing. The next Saturday morning they went out I decided to go see what was going on and this is what I found:

I saw Jeff laying down while Erik took charge. All of a sudden it made sense for why no fish were being caught. The just weren’t interested in Erik’s ping pong ball sized blob of powerbait dangling from the hook!

Poor Jeff. He is as interested in fishing as he is in quilting or watching Star Wars episode I-III. But he still buys a fishing license every year.

The other day I woke to hearing Erik whisper, “Dad, can we go fishing?” I squinted at the clock and saw that it was 5:51 a.m. They went but didn’t catch anything. Later I asked Jeff if he had been laying down (Haha) and he claimed “No.”

* Erik wants me to add that he usually does catch fish. He and his Uncle Steve will have fun swapping fishing stories.

Friday, April 15, 2011

Tropic, Utah

Have you ever been to Tropic? What do you mean, ‘What is that? Where is that?’ Silly. It is near Cannonville. Hmmm...still don't know? Okay, Tropic is close to Bryce Canyon in Southern Utah.

Last week Jeff and I went on a 3 day trip. This time we went to Tropic to visit our friends (and former neighbors) at the Stone Canyon Inn. Between Dixie’s cooking, Mike’s cowboy poetry and the red rock background you can’t go wrong.

One favorite was going to the dinosaur tracks. I hated thinking how last time I was here I scrambled right up the sandstone, no problem. THIS time, on the other hand, I needed Jeff’s help every step of the way. But at least with his help I made it up. And dinosaur tracks were everywhere!

It is so fun to drive on back country roads, with the windows down, and travel for miles without seeing another person. In these outdoor settings I get a glimpse of how we are part of something much more immense than what we can truly comprehend. Not in a way that makes me feel small and insignificant or unimportant. But I feel like each life has meaning and a purpose. It’s therapeutic :-)

Friday, March 18, 2011


The good news: I can eat again.


The bad news: I can’t eat.


Alright, I will back up. In early December I tripped, fell and broke my jaw. The next few weeks consisted of liquids, pureed and soft food. Fortunately my jaw never had to be wired shut and healed more quickly than expected. I have been eating normally for close to 2 ½ months.

Instead of saying “I can’t eat” it would be more accurate to say “I am having difficulty feeding myself.”

There are so many different muscles used each time you reach and grab a spoon, scoop up food and lift the utensil to your mouth. Muscles in your fingers, hand, arm, shoulder and back all cooperate for a simple task that is repeated over and over throughout the course of a meal.

As this task takes considerable effort I have been experimenting with different adaptive devices. Adaptive utensils and an item called “The Arm Thing” (what a lame name) haven’t been noticeably helpful. For now I have figured out method that works out well enough. But I skip on cold cereal and soups as they both dribble off the spoon before it gets to my mouth.

Do I want to be spoon fed?


I will keep trying to do it on my own as long as I can. The exception would be, accepting help from Jeff. This morning I was craving a bowl of Coco Roo’s and Jeff helped me.

I have become a fan of smoothies as they are an easy and quick way to get a nutrient dense food. We do the standard fruit/milk combo but have also used ideas from “The Green Smoothie Diet.” This week I had a smoothie with beet/spinach/apple/banana/pineapple/nutmeg. And also: kale, spinach, blueberries, quarter of a whole lemon (including peel), celery, and banana. Those are not the recipes straight from the book. We modify the recipes and use stuff we have on hand.

But then again sometimes a large strawberry shake (With whip cream and a cherry, of course.) from Chick fil-A is what I want.

Mmmm… 770 calories of happiness.

And my taste-buds always say, “Thank you.”

Wednesday, February 16, 2011

Steer clear of the garbage cans

It has been awhile since I have written! There are acouple of friends who have told me that they start to worry how I am doing when there are long lapses between posts. For those wondering, I'm still here :-)

Today is the unfortunate combination of being windy and garbage pickup day. It isn't breezy. I'm talking about wind that knocks the garbage cans over and sends trash rocketing down the street. Looking out the window I am reminded of a day just like this almost 2 years ago. I don't think I've told it here before, and everyone can use a good chuckle mid-week so here is how my morning went as recorded in my journal from March 10, 2009:

(photo from 2009)

"Last Wednesday, on garbage day, it was incredibly windy. As I was getting the girls dressed I looked out the window to see a bunch of garbage whooshing by in the wind. I still had my jammie bottoms on but zipped up my fleece jacket and went outside to make sure our garbage and recycle cans were steady.

"Outside I saw a neighbor's overturned can. Even though I was barefoot I decided to walk over and put it upright so that no more trash would “whoosh” through the streets. It was the recycle can and not too heavy and I was able to upright it. But since it was missing a wheel it promptly tipped over. So again I lifted the can back up.

"The problem was that when I lifted the can the second time it was turned facing into the wind. The wind then promptly flipped the swinging lid open and it smacked me in the face! This caused me to lose my balance and I fell down. The can then toppled on me.

"I was a bit stunned and tried to decide which hurt more, my pride or my butt!

"No one was out walking or driving by so it was just me. I bet it looked hilarious! I even giggle to myself when thinking of the sequence of events (now that my butt doesn’t hurt anymore).

"I stood up and a few moments later a South Jordan City truck drove by and the driver jumped out and put the can upright. That day the wind was so strong that at least half the neighborhood garbage cans were blown over. In driving around I saw them but didn’t try to lift anymore. I didn’t even feel bad about ignoring the overturned cans as I was still experiencing flashbacks of a lid smacking my face."

*I'm not promoting the idea that a situation is humorous when a person gets hurt. But for this paticular instance where there were no major injuries, and considering the unexpected nature in how the lid snuck up on me, it was funny.


Quick recap:

January flew by and we are over half way through February. In the past 1 1/2 months the kids have gone sledding multiple times and with help from Jeff I managed a few runs too! Jr. Jazz basketball was every Saturday morning but is now done. I loved watching Erik and his team play. Visiting with friends and family (some were local and some were in Cache Valley, Park City and Midway) also gave me something to look forward too as skiing and snowshoeing weren't on the calendar.

My crocus's are peeking through the soil and I know that my bff, Spring, is on her way.