Merry Christmas!

I wish that this was sent in the more personal card form, but I am afraid that this will have to suffice as our family’s official holiday greetings!

This past year having Erik at age 8, Claire at age 6, and Megan being 3 has been so much fun. I love how their small hand feels just the right size when I am holding it. I almost wish that time could stop and my kids could stay at this stage for just a bit longer.

Certain things come more easily to children, than to adults. And there is a lot that I can learn from them! I love how easily children laugh, how they live in the moment, how they are generous with their hugs, their constant curiosity, and how they are quick to forgive.

Even though Erik, Claire and Megan are looking forward to the gifts this year, I love that they are beginning to understand that during Christmas we are also celebrating the birth of our Savior.

We hope you have a Merry Christmas!

Some photos that may have made it on the 2010 Christmas card, had we sent one…

Claire and Megan

Erik @ Cascade Springs

Megan was happy holding this chicken and didn't mind that it pooped on her. This is shortly after Megan cut her hair, her reason being that she wanted bangs like Eriks. (haha!)

@ Red Butte Gardens

Jeff and Erik in a 5k. Erik had found a praying mantis along the course and carried it to the finish line.

Claire

Jedi-Erik

Megan trying out Jeff's backpack prior to his King's Peak trip.

I love this guy. A LOT!!!

Follow up dr. appointment

Today I had a second follow up visit. The dr. said it looked like my jaw will heal without needing to be wired shut. This is a huge relief and it was news that Jeff and I were very grateful to hear. At one point the dr. said I was lucky to have only broken my left jaw and not both. Between you and me…I hadn’t considered myself lucky, but when he put it that way I had to agree. The break occured in my upper jaw by my ear.

When people see me for the first time after hearing the news they are surprised to see I look the same. The stitches are out, the swelling has gone down, and there aren’t any bruises on my face. I was also surprised to not have the bruising. When I say I landed on my chin, I really did land smack on my chin. I suppose since it is just bone there wasn’t anything to be bruised. (?)

The fall did knock some sense into me (and scared the crap-O-la out of me). I’m now significantly more cautious in general, and now wear my leg braces from when I wake up, all day, until bedtime.

I’m REALLY looking forward to adding soft food to my current pureed food/smoothie diet.

Nasty Fall

The little red circle shows where the break occured on my upper left jawbone.

I had a nasty fall on Friday, Dec 3, which resulted in a couple of chipped teeth, cut on my chin, and a broken jaw.

It happened around 11:30am. Megan was sitting in a chair in the kitchen and I was combing her hair. (Quit wondering why it took me until 11:30 to comb my daughter’s hair. Shush…I’m telling my story.) While I was walking from the right side of the chair to the left side my toe caught on the chair leg and I lost my balance. In that second it took to fall I was thinking “Janae get your arms up!” But I still lacked the strength to break the fall and landed on my chin.

As I lifted up my head, I could see the blood start to drip onto the tile floor and heard Megan in the background repeating, “I’m sorry mommy!” I tried going into mom mode by saying, “It’s not your fault Megan, I tripped by myself. Will you go get me a towel from the kitchen drawer?” She ran and got a towel for the bleeding. I then asked, “Meggie, will you now get me the phone so I can call daddy.” She brought me the phone. Jeff’s office is about a mile from our house was able to get home quickly.

After our friend and neighbor, Andrea, came over to pick up Megan, Jeff and I went to the E.R. The Dr. put 4 stitches inside the laceration on my chin to pull the muscle together and then 10 stitches on top. The x-rays didn’t show any broken bones so they did a CT scan. This time the fracture was visible in the upper left jawbone.

The person we need to meet with next is the plastic surgeon. He actually called here today saying he can meet on Wednesday. He reviewed the CT scan and said there is a chance that the brake can heal without my jaw needing surgery. It may take two weeks to know if this is an option so we have to wait and see if my jaw realigns as the swelling goes down. If I do need surgery and my jaw is wired shut, then there is a chance that I would also need a feeding tube put in (because of potential ALS related problems). A glimmer of hope is good enough for me, so I’ll hang onto that. I will post an update when we know more.

I describe the pain as a dull ache but whenever I swallow it hurts because the motion moves my jaw. Yawning is quite painful. I can open my mouth wide enough to fit in a spoon, but if I can use a straw to slurp up food that is preferred over a spoon. I am so happy that I can still speak!

People have been so kind in offering help and to bring by soup and food. When Amy and Angie showed up this afternoon with an amazing blender I thought I might cry. (A happy, appreciative type cry.) This blender can probably puree a computer if it wanted to. I will be doing a lot of blending over the next few weeks.

If you had to pick between a) snow or b) poisonous creatures...

The taunting phone calls usually start in October when the weather turns chilly in Utah. My two sisters will let us know what the weather is like where they live. We hear reports such as 90 degrees from Kristen. While from Heidi it might be 78 and partly cloudy skies.

The weather here right now? 27 degrees but feels like 19 because of the wind chill.

Yesterday the phone call I received from Kristen, who lives in the D.R. Congo, wasn't about the weather, it was about snakes. It was to tell me about a 5 1/2 foot Forest Cobra. It was found on their back patio near the hutch containing her sons pet guinea pigs. In the past few months in their yard they have found one Gabon Viper and now two cobras.

Eeek!

From snakes we now go to spiders. I have heard Heidi talk about how where she lives there are A LOT of Black Widow spiders and just a few months ago she was bit by one.

Again, Eeek!

I LOVE my sisters. A gal couldn't ask for better sisters. But ladies, you can take your warm weather and poisonous creatures, and I'll stick with my snow.

(To be fair, the taunting phones are a two way deal. We call Heidi to tell her about our 82 degrees when it is a smokin' 113 in her back yard. Oh and I do see an occasional Black Widow outside, but I haven't been bit yet.)

Here are some recent photos...



Snow!

On this particular morning my kids had eaten their breakfast, put on their snow clothes and were out the door to go sledding by 7:15am. Yes, they are nuts. And I love them for it.

Thankful for...

My family and Jeff's are a bit too spread out for my tastes. You will find us in 6 different states and two different (soon-to-be three) countries. We just don't see family as often as we would like!

With Thanksgiving coming up: Today I am thankful for the visit from my brother Steve. He stayed with us for 2 days before heading out for training and then on to Iraq.

We love you Steve!

grOw

(photo from 2009)

Finding the caterpillars which become Monarch butterflies is a favorite September activity for our kids. We put the caterpillars in a little cage and over the next 3 weeks we watch them eat away at milkweed leaves, form their chrysalis, and emerge as a butterfly.

This year Erik found just one caterpillar and named it Catty. One morning Erik decided to clean out the cage. He carefully put Catty, and the leaf she was having for breakfast, on a plate to keep her safe. Megan wanted to get a better look and moved the plate to the floor (a bad idea). Well, Jeff came walking around the corner (from here it goes from bad to worse) and accidentally stepped on Erik's beloved caterpillar.

Squashed. Dead. The End.

Over the next 2 days when the kids got home from school I drove them around as they searched for milkweed plants and inspected them for caterpillars. We never found any, but Erik and Claire did collect milkweed seeds to plant on the south side of our house.

Here is the plan: It is to convince Monarch butterflies that our yard would be a wonderful place to raise a family. Just think; all sorts of perennials and flowering shrubs for mom and dad, and milkweed for the kids. They will love it here. Okay, maybe not. We will just have to wait and see if the seeds actually grow!

(another 2009 photo)

Onto other plant news...our annual Christmas Amaryllis planting project is under way. This year Jeff and the kids planted 20.

I'm saying it is always a good time to grOw.

All in the name of Accessibility

September 2009 was a rough month. Fast forward a year to September 2010 and I spent a good chunk of the month in an irritable mood.

If I were to be compared to an animal, I would have been Mango. Imagine a large fluffy orange cat. Now imagine that cat crouched on the doorstep with its fur wet from the rain, its ears laid back and body tense, a ticked off expression on its face, and all the while you hear that angry cat growl.

I don't think I portrayed that image to everyone I came in contact with, but that is how I felt inside. It was a result of my anticipation of some upcoming home improvement projects.

It is a cycle that I have come to recognize. As more of my physical abilities are lost, adaptations need to be made. And I get angry about the changes. It would have been nice if the diagnosis could have been given and I could have gotten out all of my grieving in the early stages and then moved on anticipating and making needed changes as I go...anger free. But like I said, it is a cycle I recognize, and it is how I mourn. I mourn incrementally as needed, and then move on.

This time the adaptations were big; Improving and increasing accessibility. We added a handrail down the steps into our backyard and remodeled our bathroom. The counter has been lowered, the shower is now a walk-in and a wall was partially removed and the doorway widened to be (someday when needed) wheelchair accessible. Everything was wrapped up in October.

With the big changes came a lot of sadness and it seemed to drag on much longer than normal. One morning, after Erik and Claire left for school and Jeff had gone to work, all I wanted to do was stare at the old nail hole in the wall. Do you know what I mean, where you want everything and everyone to just go away. Even if it is only for a couple of hours.

All of a sudden my wake-up call came. It was like there was a voice in my head saying, "Janae, this has gone on long enough. Get over yourself!" (There wasn't really a voice in my head...because that would present a another set of problems!) I had passed the point of grief to where it became unproductive self pity. Feeling sorry for myself consumes a surprisingly large amount of energy. So the wake-up call was a welcomed kick to get my a*s moving.

I got up and walked down the hall and just started laughing at Megan. She was dancing in the middle of our family room rug, wearing a bunch of medals around her neck and singing into a crayon. Her song went something like, "I'm a rock star, every day...God gave us fam-ilies...O' yah, I'm a really good singer!"

Thank heavens for my young children, they keep me sane.

October has had some blah, but it has been mostly good.

Enough of me. Now back to my kids...

ALS update

It looks like I'm doing some sort of pose from the movie "Titanic." Haha. At the time I was trying to walk into some crazy wind on top of the Wellsvilles. The photo dating back to 1995 was from another lifetime.

Background: The first ALS symptom was 3 1/2 years ago. Diagnosis was 2 years 3 months ago.

I think we will start at the top and work down.

Speech is continuing to slow down. Not a lot of power in projecting my voice.

My hair gives a thank you to my sister-in-laws, Sandi and Erin. This summer they gave Jeff lessons in how to put my hair in a ponytail. He is such a good sport in so many ways.

My arms and shoulders are weak. If I need to reach sometime that is eye level, I go on my tiptoes because then I am a bit taller and it means 3 less inches I have to lift my arms up. Everything is heavy.

My hands. The fingers are starting to curl in. Some fingers I can't extend all the way. It makes for an funny wave. My right thumb barely moves and for the most part it stays curled next to my palm. I do try to stretch it throughout the day. If I want to grip a glass in my right hand I will use my left hand to position my right thumb and then wrap the rest of the fingers around to grip. Drinking straws have become handy to eliminate the need to lift a glass all of the way. There is concentrated effort to keep my hand steady while using utensils in general. I use my left hand to pick up small objects. When taking my meds. often I will dip the tip of my finger in water and then when I dab at a tiny pill it will stick. From there I just have to lift it to my mouth. For all the zippers on my pants, there are now attached loops where I can hook my finger in and pull up. There is no way I can button my pants and so I use my fastened belt to keep things flat. At church picking up the sacrament bread and tiny water cups is difficult. Trying to shake hands with someone when my thumb doesn't lift up is awkward.

My legs. Balance is an ongoing problem with the result being more falls and more bruises. The real eye opener was when I tripped on a gravel path and went down. I was able to get my arms out in front to break the fall. But there was not enough strength to prevent me from grazing my chin and nose on the gravel. Braces and my hiking pole should be the norm when I'm out. When I don't use them it's because I am being stubborn or stupid. Probably both.

Walking. The heel to toe walking motion has been gone for some time. When I walk in the house without braces I concentrate to get my foot flat because my toes want to land first. It turns into more of a shuffle.

I sound repetitive from previous posts. I think back to a year ago on what I was complaining about then and in comparison to today...back then I had it good! That must mean that I better enjoy today.

(Are these updates helpful? Yes? No? I'll do one more "me" after this and then get back to the kids.)

July 2010 Road Trip

Glacier

Jeff asked where I wanted to go. I requested "somewhere with big wide open spaces and not a lot of people."

It seemed natural that the road trip would take us to Montana.

Erik, Claire, and Megan stayed with my parents while Jeff and I drove north. We took back roads and main roads and saw some of the most beautiful country. After visiting my cousin Jamie and her family, Jeff and I drove to Glacier National Park and then on to Waterton Lakes National Park (it borders Glacier but is on the Canadian side).

I have fallen in love with Montana and can see why someone could go there on vacation and never leave. Granted I was there in July and not January!

In the day to day we are surrounded by so much noise and have access to constant information at our fingertips. I hate when all the "noise" begins to infer with my ability to focus on my children or have an uninterrupted conversation with Jeff. As for the road trip, I loved having a break from computers and television and cell phones (there was a 3 day period where we didn't have coverage) . People are right when they say the phrase "peace and quiet." There is a lot of peace that comes from slowing down and being quiet.

Waterton

We saw lots of wildlife

... I consider myself warned

Popsicles (and the pink cast)

While gelato rules supreme, there is something to be said for popsicles. When I am sitting outside with my kids on a hot summer day a popsicle seems perfect.

and the pink cast close up...

Gelato

(I didn't take this picture)

After Erik had worked on his Great Brain project in school, I thought, "I want to have a Great Brain project too!" So I picked the topic of gelato.

(I admit right here that this was just a weak excuse to eat more dessert...)

My "research" mainly involved taste testing. The gelato from one location was surprisingly bland, while the gelato from another shop made my tastebuds pop. The intense flavor selections are what gets me: Pink grapefruit, guava, passion fruit, key lime, lemon, blueberry, coconut almond, chili chocolate, amaretto, hazelnut and many more. Serving sizes are not so big but this Italian ice cream is so savory you don't need it.

I came up with my two favorite gelato shops, both which also have great panini sandwiches and other menu items.

San Gelato Cafe is on the west side of the valley in the Daybreak neighborhood at 11259 Kestral Rise Rd. Go for a walk around the lake and then head to the cafe for some gelato - yum! (I heard they have live music on Friday nights during the summer.)

Bella Cittas is on the east side at 2101 East 9400 South. If you keep driving east on 9400 South it will take you right up to Little Cottonwood Canyon which is so beautiful this time of year (then again it is always beautiful).

Broken arm for Claire

BEFORE...

AFTER...

The "before" picture was drawn by Claire shortly after we got our trampoline a month ago. And the "after" x-ray was taken Thursday evening as a result of that same trampoline!

Following the accident we took her to a nearby hospital thinking it would be a simple 3-step process: x-ray, cast, home.

The x-ray revealed a nasty break and we were told to go to Primary Children's Hospital. Jeff drove her there and she went in for surgery around 11:30pm. The surgeon set Claire's arm via x-ray, as it wasn't invasive, and put in 3 pins. After she set her arm the first time Claire's arm had turned white and she could not find a pulse. The surgeon removed the pins and re did the procedure. Following the surgery the dr. found a pulse on her arm below the break but was still concerned that the blood flow to her lower arm was being limited.

At 6:00am Claire went in for surgery #2 with the same orthopedic surgeon, along with the chief vascular surgeon and a Fellow. They sliced open her arm and found that when the the bones had been reduced (put back together) her artery had gotten caught and pinched between the bone. So as the orthopedic surgeon was putting the bones together (again), the Fellow lifted up Claire's artery so it wouldn't get caught, and the vascular surgeon put in the pins ( for the 3rd time).

The orthopedic surgeon performed 11 surgeries on Thursday night/Friday morning, and 6 out of the 11 surgeries were trampoline related. Of course we asked, and no, there is NOT (or ever will be) a trampoline at her house.

I joined Claire and Jeff after surgery #2, and spent the day at the hospital. I know it wasn't a life or death situation, but seeing my child laying on the bed hooked up to an I.V. was unnerving. Claire spent Friday night at the hospital so they could monitor her and make sure things were working properly.

She came home Saturday morning her arm was all wrapped up and in a sling. Megan saw it and said, "That's a BIG band-aid!" I have always thought Jeff was a great dad and these past couple of days again proved it. He has super-dad status!

Fortunately, before this week, we haven't had to spend much time at Primary Children's Hospital (once for a few hours when Erik was a baby). Having been there I can say we were impressed with the care that Claire received. Everyone we interacted with was great.

The whole thing turned out to be more than the 3-step process we had hoped for, and we are glad to have her home! (Claire should get a cast on Wednesday.)

Alan

This past Saturday we went to the funeral of my Aunt Julie's husband, Alan.

Alan was described as being a man of courage, strength, kindness and faith. His garden was so beautiful they said he didn't have just one, but two, green thumbs.

Simply by being around Alan made me want to try and be a better person. He was an incredible man.

Statistical Likelihood

Statistical Likelihood. I heard Jeff say that term in passing conversation and it got me thinking about my June 2 clinic visit.

What is the likelihood of a person spending an afternoon discussing options on adapting to and coping with an increasing debilitating motor neuron disease, ALS?
About 1 per 100,000 people.

What is the likelihood of me taking Quinine?
Quinine is a drug used to treat malaria and severe muscle cramps. In my case it would be used to treat my nightly leg cramps. The clinic pharmacist mentioned its $200 a month price tag. Yikes $200? It wouldn't be my most expensive med, but that is pricey. I said that we would price check on that drug with my sister who lives in the D.R. Congo because surely they have it there. The pharmacists response was to say, "You are freaking out the pharmacist with that talk about purchasing meds. from Africa!"

My sis. did check prices for me and said their Quinine comes from France and if purchased from a reputable pharmacy it runs around $8. So my answer is that I don't know if I'm going to take it. My main concern are potential negative side effects so I ought to study it out more.

What is the likelihood of me implementing the various suggestions I received like getting a light weight wheelchair for Jeff to push me in, and start using my hiking poles for added balance in everyday walking?
Not going to be happening yet for the wheelchair, but the hiking poles...I am getting closer to accepting that.

Here is where someone says, "Janae, why are you being so stubborn? If you were to implement these devices you could conserve your energy and be able to enjoy some of the activities you enjoy. Sure you can't walk all the way around the lake, but if you took a wheelchair you could walk part of the way and then Jeff could push you the rest of the way."

And now here is my response. I am not so worried what people think, I am more bothered by the patronizing treatment that sometimes comes when people realize you have a physical disability. The other day I was struggling with a relatively simple task. Afterward a stranger who was standing nearby smiled at me and said, "Good job!" I know her intentions were good but it left me feeling like a 5 year old being patted on the head.

I'm still here mentally. I know when you are staring at me and your whispers are not as quiet as you think they are, so just go ahead and ask your question. It's okay. Some days I respond with unintended irritation & sharpness. My apologies in advance.

On this one the clinic staff are right (ouch, that was hard to say...haha). I need to let go of my pride, accept the wheelchair advice, and recognize and appreciate the good intentions and kind acts.

I truly am grateful but still struggle with how to be gracious.

What is the likelihood of a cure being found anytime soon?
There are so many studies being done. Research on how to cure the disease and research on what causes it in the first place. Unfortunately there aren't definite answers. This of course means I had better warm up to the idea of a wheelchair.

That is it for now.

Great Brain Project (Erik)

Erik has a school assignment called The Great Brain. The children are supposed to choose a subject that they want to learn more about. Then they read books about this topic, keep a notebook on it, prepare a simple poster and present the information to the class. Erik wanted his Great Brain project to be birds of prey, more specifically, falcons. We went to the library and checked out a bunch of books and began reading.

Well, this week I mentioned Erik's Great Brain project to a friend. She replied that her brother was a Master Falconer and would we like to meet him and his birds? I replied "Yes, of course!"

(Side note: I read the book "My Side of the Mountain" when I was younger. In the book there is a boy with a falcon named Frightful. After reading the book I too wanted a falcon or small hawk and began reading about them and trying to convince my parents that owning one was a good idea. It didn't work. I had to wait until I was an adult and then bought baby chickens instead. Not quite the same. Sigh.)

Last night I took the kids to meet Shane and his Praire Falcon. I gotta tell you, it was love at first sight with this bird. The falcon was beautiful. We spent close to an hour hearing stories and asking questions and Erik even got to hold it!

The funniest part was Megan's reaction when she first saw the falcon. She said, "I like your chicken! How many chickens do you have? Can I pet your chicken?" She then went up to the hooded bird and began petting its back.

Shane carefully moved the bird and said, "That might not be the best idea." And I told her this bird might bite her fingers off. Megan didn't seem too bothered by this and replied, "I like your chicken!"

That is one strong hamster

Dinner Conversation...

Erik: Who is the strongest in the family?
Everyone: Daddy!
Erik: Well I am the next strongest. George* (our hamster) is third strongest.
Claire: No he isn't! I'm stronger than George!

It turned into a rather touchy subject. I knew that I wasn't going to land one of the top two spots but thought that I had a chance at numero tres. If not that then, come on, I am for sure one of the top four strongest members of this family.

George, I'm going to challenge you to an arm wrestle. Let's see what you've got.

*For clarification purposes I should state that George is the hamster formerly known as Daisy. How can this be?! When we got Daisy from the pet store she was a young hamster. Now that she is older we see that she, in fact, is a he.

Sorry George! (haha)

Humble Pie

The internal dialogue went something like this…

Brain: Hey Janae is doing pretty good.
Body: (in a combative tone) No she isn’t.
Brain: Sure she is.
Body: No she isn’t. And I’ll prove it.

The day started with a nasty fall. This one left me with a wickedly colorful bruise on my hip and arm.

Erik needed a permission slip signed for a school outing. I took a pen and began to scrawl out his name on the “student name line” and then signed my name on the “parent’s signature line.” It looked pretty bad. I hoped Erik’s teacher wouldn’t think he was trying to forge his parent’s name. (I laugh as I remember a kid, Gary, from my own second grade class who sat behind me. I turned around and watched him forge his own mother’s signature so he could go on a fieldtrip.)

Later we had dinner at Jeff’s parent’s house along with some extended family. While I was talking with his cousins I had a laryngeal spasm (the description I have given in the past is that my windpipe will cramp and I can’t breathe until it relaxes). When I feel them coming on I stop talking/eating and just try to stay relaxed until it passes. When people don’t know what is going on it is alarming when one minute Janae is talking and then she is all of a sudden very quiet and not verbally responding.

With troubled looks on their faces the cousins asked “Are you okay? Are you choking?” I shook my head no to the choking questions and motioned for them to get Jeff so he could explain what was going on. So if you are around me when this happens, and I respond “no” to the choking questions, just wait for a minute and I will be okay. Though, for me, that will be a scary & frustrating minute (and embarrassing if you make a big fuss).

By the end of the day my body had successfully proven its point to my brain. I had had serving after serving of humble pie. It tastes nothing like a fresh homemade pie.

Humble pie is gross.

Chickens 2010

I don't know how it happened but we got chicks again.

Well okay, I do know how it happened. It all started with a trip to go visit the Chicken Lady and buy some eggs from her happy free range chickens. These eggs are $3.00 a dozen and we had to drive 10 miles to get there.

Yes, I know, there is a grocery store a mile away with much cheaper eggs. But this time it was more about the "experience."

Back to the story. We got there and the kids love petting the horses and seeing all sorts of chicken eggs. Brown eggs, green eggs, little eggs and big eggs. The Chicken Lady also had chicks. Hundred's of fluffy little chicks for sale. They were so cute that they were beyond adorable. Of course the immediate response from my children is to ask the question, "Can we buy a chick?"

Me: "No."
Kids: "Please?!"
Me: "We don't have any bedding or chicken food."
Kids: "We can buy some."
Me: "Well...maybe we could do that."

At this point I really needed Jeff here to be my "voice of reason" but he was hiking in Southern Utah. You would think the smell of hundred's of chicks would be reason enough to deter me. But at this point my ability to use good decision making logic was pretty much gone. There was no longer any need for my kids to ask/plead/negotiate because now I too wanted chicks.

We now have had 3 three chicks for about a month. The kids named them: Rocko, Sarah, and Daisy (yup, a couple of repeat names from last year). The chicks will stay with us for probably one more week before they go to their permanent home where they hopefully have a happy, egg laying, free range life.

Baptism Day

Dear Erik,

March is a busy month for us, but without a doubt the best part about this year was last Saturday when you were baptized! I tried to keep the tears in but when you came up out of the water I'm afraid that a few tears came out anyway.

But crying is just something that moms do at these type of events.

They weren't sad tears. This time they were happy tears. It was a combination of relief and joy. Relief that I was here to see the baptism of my son, and joy because of your decision to be baptized. Everything that your dad and I teach you... I really believe is true. I'll be honest that there are some things I don't understand or have the answers for right now. But what I do know is that the times I put forth effort to follow the teachings of Jesus, it is easier to find that peace and happiness I'm always in need of.

I love you so much!

Love ALWAYS - Mom

Giddiyup

Megan looked so cute in her boot/dance outfit combo. I grabbed the camera thinking "This is something I want to remember."

Our girl takes naps with toy horses, and she loves to wear her "cowboy boots." One morning in January when it was too cold to play outside I took her to an indoor arena just to watch people ride their horses.

Giddiyup little Mae.

One day closer to spring!

At the beginning of February I started watching the plants knowing that, because despite their bare and unadorned branches, they are filled with life just waiting to happen.

(Yes, I can be a tad impatient. Why do you ask?)

Finally it is happening! The buds on tree and shrub branches are beginning to grow. This morning I saw little bits of green peeking out from the leftover dead of a cut down daylily. Once the crocus, daffodil, and tulip come up through the soil, the snow isn't quite so bothersome. The snow will eventually go away, and there are a whole lot of tulips that I'm waiting for.

Woo-hoo let's hear it for SPRING!

(Could you hurry...just a little.)

Q & A round two

I had my quarterly clinic visit this week. We showed up at 11:30am and left at 5:40pm. After visiting with all the people there, by the end of the day, I felt like a broken record having repeated myself over and over and over.

Since I said that there would be a Q & A round two this week, here we go.

Q: Are you in a lot of pain?
A: No. Discomfort would be a better word, and that is only when I get muscle cramps.

Q: Can you feel the disease progress inside your body?
A: As the muscle atrophy progresses everyday tasks become difficult. I try to adapt and keep doing as many of the tasks as I can. And then one day, I find that there is something that I just can't do anymore. For instance right now, it is difficult for my ring finger on the right hand to push down the "o" key while typing. So sometimes I use my middle finger instead.

Q: Is your diaphragm weak? And has your breathing been affected yet?
A: My breathing is still good, although I've noticed that there is less power to project my voice the way I would like. At Wednesdays clinic I scored 94 which I think is what my last score was. I have started doing a breath stacking exercise which will help strengthen my lungs (the respiratory therapist would say I didn't explain it very well).

Q: Have you started recording your voice.
A: No. I probably ought to be more proactive on this one. We have a friend, Tim S., who is a director. He spent one day following us around with a fancy video camera. We went up the canyon and to Red Butte Gardens (this was during the summer), and we got 4 tapes worth of footage of "A day in the life of..." sort of thing.

Q: What are some recent adaptations to your house?
A: We got a small microwave that sets on the counter so I don't have to reach up to the other one which is above the stove. I also made sure to get one that has a handle so that it opens by pulling, which is easier than pushing a big button to open. When we purchased a new standing lamp we made sure to get one that had a switch in the middle and not the top. We previously replaced doorknobs with levers. I mentioned to Jeff how we should add grab bars to the bathroom/shower. I now have an electric can opener versus a hand held opener. I have moved my clothes to the lower shelves so I don't have to reach up.

Q: When other people complain about little stuff does it annoy you?
A: Sure there are times where a person is complaining and I am thinking, "They are making this into a much bigger deal than it really needs to be." But who doesn't think like that at one point or another. I'm sure people have rolled their eyes when they hear me complain how the shrubs in front of our stake center were pruned. (A stake center is a church building. The plants were pruned all rounded out. Anyone with any kind of landscape sense knows that a smooth sumac and those rose bushes should be left to their natural shape!)

We all have challenges and trials. And hopefully we learn to be more compassionate from them, instead of comparing and complaining how much harder our life is.

Q: How do you stay so positive?
A: Hahahahahahahahahahahahhahahaha...oh that is funny! Seriously, I need to wipe away my tears from laughing so hard! Hahahaha.

What was the question again? Oh yes, staying positive. Well I go through periods where I'm a mad and want to smash every heavy glass in the cupboard. Each time I loose an ability to do something I mourn the loss. Some periods of mourning last longer than others. Then I move on.

When the question was first asked, after I laughed, my response was quick. Prayer. Yesterday my dad told me that every day he prays that I can feel the love of God. That means a lot know people are thinking about me and praying for me. When I pray, sometimes I lay it out and tell my Heavenly Father what I happen to be angry about. Other times I express gratitude for the ways I have been blessed. And also, I pray for peace and for perspective.

Daddy-Daughter Dance

Claire is in here element when it comes to Valentines Day. All year long she does what comes natural to her and then come February 14 it is her day to shine.

Claire always gives a hug and a kiss.
Every day she says "I love you"
She is always making cards for people.
The color pink...she has got that one down.

Valentines Day is a piece of cake for our girl.

Last weekend Claire and Jeff went to Daddy-Daughter Dance. Claire put on her most fancy pink dress for the event. When they arrived, Claire was given a corsasge, they did a craft project, their picture was taken, they were served dinner, and there was dancing too.

We asked Claire what she thought about the evening, and she responded, "I LOVED it!"

Thief

It has happened again. ALS, that dirty rotten thief, has stolen even more.

In the past when a task grew difficult I had reserve muscle so I could figure out a way to adapt. Well the reserves are gone. Instead of noticing changes in my body monthly, it seems to be weekly. Here is a list of noticed changes since the beginning of the year:

-If I am sitting on the ground I need assistance of some sort to resume a standing position (a person or a chair etc.).
-If my hands are cold I don't have enough hand strength to text. My phone has a touch screen.
-Scissors are difficult to use.
-If I want to wear earrings someone else puts them in. (well that one has been around for awhile)
-I am extremely cautious descending stairs without a handrail.
-Jeff has noticed changes in my voice (so have I). There is more effort to enunciate. My voice tires and cracks even more easily. If we are in a noisy group setting I
don't talk much because of the extra effort.

That last one is scary.

But life is still good. And I'm not just saying it. I am believing it.

A year ago I grumbled about how "There are other things to talk about" but that attitude was sooooooo 2009. Turns out people have a lot of questions. I think next week I will do another round of Q & A on the blog. If you have any ALS questions get them in.

And Rebecca, while your question made me laugh, I'm NOT going to answer it. Hee Hee.

k-i-s-s-i-n-g

Erik started singing a new song at dinnertime. It goes something like this:

Claire and _______(insert boys name here)
sitting in a tree.
K-i-s-s-i-n-g.
First comes love, then comes marriage,
then comes Peter in the pumpkin carriage.

He didn't get the ending right but I'm not going to bother with that. Claire then started singing the song back, but using Erik and a girls name. She stopped and asked what k-i-s-s-i-n-g spelled. As soon as we said "kiss", Claire got a big smile on her face and started giggling. She then began singing the song with more gusto. All the while Erik was yelling "Nooooooo!"

The singing went back and forth. Megan didn't want to be left out of the fun so she started hollering. Soon the three of them were running around the table chasing each other and ran off to another room.

At this point Jeff and I could have called them back to clear their dishes and give them a mini lesson on table manners. But the room was suddenly quiet and it was just the two of us. Kindof like a date.

Except by then the screaming had started again in another part of the house.

In the past I have wondered just how old do my kids have to be before there is a 24 hour period of no crying. We recently had that when just the kids went to visit my parents for a few days. Our home was quiet and calm and there was no crying. By the end of the first day I was already missing them! Because with all that quiet came the absence of kids laughing, giggling, story time, tucking into bed, hugs and kisses. It fell into the "grass is greener" category where you want what you don't have. And when you finally get it, it isn't as great as you thought it would be.

Well I got a ton done the few days they were gone. When they arrived home my children came running in the door, just about knocking me over with hugs and kisses. Welcome home!

And I'm sure someone was crying within 10 minutes. Oh well ;-)

Love = a chicken sandwich

The conversation went something like this:

Jeff: I love you.

Janae: Why?

Jeff: (brief pause) Because you made me a chicken sandwich.

The conversation probably ended with me saying, "Hmmm."

Both Jeff and I tell each other "I love you" easily and frequently. We also tell our children "I love you" every day. It is just that this time I wanted to know what it was about me at that moment, that Jeff found lovable. Apparently it was my sandwich making skills.

In thinking about it, I would not make a sandwich for just anyone. Due to the loss of strength in my arms and hands, the process of assembling a sandwich has become surprising difficult (I'm not complaining...just stating). It is nice to know that Jeff recognized and appreciated the effort that went into preparing that lunch.

If Jeff asks me why I love him, my response is ready. I'll say, "Because you made me pancakes topped with vanilla yogurt and blueberries." They were so good.

Me me me

Last month I was asked the question, "how is your health?"

It was 8:00pm and the day had been exhausting. In my head I was thinking, "what do you mean, 'how is my health?' I have amyotrophic lateral sclerosis for crying out loud!" And so crying out loud is just what I did. I burst into tears.

Last Saturday Marcie was in town and stopped by to visit. She lives much too far away and these visits don't happen enough so I was looking forward to her coming. A few minutes into the conversation I burst into tears again. (If you know me, you'll know that I hate crying publicly because I don't possess the talent to talk and cry at the same time. It is one or the other.) After I was done I requested that she ask me some more questions so that could try and figure out what triggers the tears. It would be nice for people to ask away, and for me to reply in a matter of fact way.

Right now let's practice a Q & A session:

Q: How is your health?
A: It stinks.

Q: Could you be more specific?
A: Sure. My right thumb is close to useless and my left thumb is starting to be a follower. Typing all of this is a slow and clumsy process. Today for the first time I wore my right leg brace in addition to my left leg brace. I hated how much easier it made walking. My arms are fatigued after brushing teeth and flossing. Lifting a large glass filled to the top is a two hand job. I now notice that there is effort involved when I transition from a sitting to a standing position. A gallon of milk is so so heavy.

Q: Did you really have fun in Mazatlan?
A: Yes I did. But I was not looking forward to it for the longest time. Thinking about being surrounded by healthy bodies on the beach was depressing. Once there, yes, people were flaunting their strong and healthy bodies left and right. They were playing ultimate frisbee, boogie boarding, and going for runs on the beach. If I wanted to go in the water deeper than my shins I had to hold onto Jeff's arm so that the waves wouldn't knock me over. Despite that, 80 degree weather was lovely, the sand was warm, and the Mexico trip was worth it. Plus everyday I had cute hair in a ponytail, or braid, or bun thanks to 2 of my sister-in-laws. Thank you Kim and Erin!

Q: Who does the grocery shopping?
A: Jeff does. (btw do you have any idea how much I love that man!) I did attempt grocery shopping this past Tuesday, just to pick up a few random items. Erik and Claire were with me. They helped push the cart around, load the food onto the check stand, and bring all the groceries into the house when we got home. When I related this story to Jeff he asked if I used my close parking pass. The answer was no.

Q: Do you ever use the "close parking pass"?
A: Okay fine, call it the handicap pass or whatever. Jeff has used it twice for church. His reason being that he didn't want to park far away and carry the church bag, and herd 3 kids, and help me over icy spots in the parking lot. So now we park close. The first time he used it, I was quite angry with him (my pride) and wanted to say something mean. But didn't because I love him.

Q: One more question.
A: I'm just about done here.

Q: In previous blog posts you've mentioned "constant fassiculations." What do you mean?
A: The subtle muscle twitches...if I've just finished doing something somewhat active and sit down I feel a twitch here and there and all over. A conservative guess would be 60 per minute.

That is enough questions for now.

Mazatlan 2009

*My apologies go out for not sending Christmas cards. It just didn't happen this year. For those who didn't send us a card, no hard feelings because I don't want to be a hypocrite on this one ;-) But for those who did, thank YOU! It was so fun reading what your family has been up to and seeing the pictures too!

2009 was supposed to be an off year for the Jeff & Janae family. As the weather grew chilly the sunny beaches of Mazatlan sounded mighty good. And so once again we packed up and loaded into Jeff's parents motorhome and drove south. If you read last years post it will fill you in on how the tradition of driving (driving!) to Mexico for Christmas began.

Honestly the trip doesn't vary too much year to year. We play on the same beaches. We go to the same churro guy. We see some of the same beach vendors year after year. And I am okay with that. I'm not going to complain that we get a 2 week break from the cold, and it means a lot to have the chance to get create memories with family/friends. Another reason why I like the trip is that it's an opportunity for my children to experience another country. But despite some differences, Mazatlan still has a Home Depot, Sam's Club, Office Depot or McDonald's.

Every day while in Mexico we got a ton of help from family, otherwise this trip wouldn't have been much fun or even possible. Thank you!

I whittled Mazatlan '09 down to 23 photos.

In the motorhome were 6 adults, 3 children, and 2 dogs. Jeff, his dad and brother drove straight through stopping only for fuel, at the border, and tolls. We left at 5:00pm on a Thursday and arrived at the trailer park Saturday 2:00am. Once there Jeff the kids and I moved into a ground floor condo in the trailer park.

This year there were about 123 people in the group. Check out the new monster hotel that was built next door to the trailer park!




This shirt belongs to Jeff's brother, Joe. Joe and his family didn't make it to Mexico this year but he wanted to make sure his official beach shirt came so he sent it with Jeff. I don't know how many times this shirt has made the trip but it is starting wear out. I had to get a picture!


The churro guy told us he usually sells between 300-400 pesos worth of churros a day. During the holidays he might sell up 1,000 pesos worth. That works out to be between $25 to $33 on a normal day and $83 on the holidays. Those numbers make me sad because his churros are a million times better than Disneyland's ripoff $4.00 churros. But we have visited him year after year on the same street corner so it must work for him.

One of the drink stands.


Christmas morning Erik was learning some surfing basics from Brett.


Erik is an expert gecko catcher. Here is a question I want to put out there. Why does my son freak out when I try to put sunscreen on him, but when Erik gets tossed by a wave he will pop up out of the water with a huge grin on his face?

Megan has the cutest little brown legs.

Kayla, Kiera & Claire.

The girls with grandpa.

The girls with grandma.



My parents even flew down and stayed for a few days!

Brian & Erin
Kim, Stuart, Kiera, Sam & Kayla

Me and my favorite 4 people in the world.