Chad and I were sitting in the doctors office. I was excited, sure that I would finally have the genetic test that would conclusively show I had periodic paralysis so that I could get into a study. I felt like it was time to get better. With new medications, I just might get my life back.

Dr. Johnson walked in with two medical students and two pieces of paper. He joyfully told us that my genetic test was negative. I definitely did not have periodic paralysis. I was in shock. I questioned it. Couldn’t there be a negative test and I’d still have MD?

Not in my case. If I had it there would be a mutation somewhere on the gene but I had none. No mutations, no chance of periodic paralysis. The doctor seemed to think this was great news but I was still in shock. What was it? Something better? Something treatable? Something worse? Was this why I wasn’t getting any better?

I started to cry. I never used to cry in front of people but the more comfortable I get with myself, the more my emotions just spill out whether it’s happiness or sadness. Poor doctor.

I cried all the way home. I wanted a diagnosis. I wanted to get better. Later on I was reminded that I was on the way to getting better since I’d been treated with the wrong disease for a year and a half thanks to my insurance that didn’t want to cover the test.

The next step is a painful muscle biopsy scheduled for right before Thanksgiving. It will tell the doctor what is going on and what direction we needed to go in.

Ok, I know that looks weird but this photo represents my day. It started something like this…

7:30 am

I’m so tired, please go away. I just want to sleep…

“Jaden, you can have toast or cereal.”

I think this might be an attack…

“Jaden, can you get me some potassium?”

What’s taking so long? It’s too late to get some from my bedside stash- my hands won’t be able to unscrew the bottle. 

Pretty soon I’ll have a hard time drinking it even with a straw… stop fighting over it and one of you just bring it in here!

“Jaden, can you get me a bendy straw please?”

“There are scissors right over there.”

“Just cut the edge of the package.”

“Can you move it over here to the bed so I can hold onto it?”

“Thanks Jaden. Go get ready for school.”

There is so much water in here. It’s taking forever to drink it all down. 

Boy am I sick of the taste of this stuff.

“Jaden you have to get dressed.”

“You’re underwear is in a laundry basket downstairs with Ari’s stuff.”

I need to put something else on the ceiling so I don’t have to stare at that fan all the time.

“Keep looking.”

“Can you get someone to help you?”

Oh no, I can’t believe it’s 8:15 already. Ugly fan. Only thing worse is when you’re on and then you shine right in my eyes.

“Jaden, you HAVE to get dressed. You’re going to be late!”

“Eric! Can you go downstairs and get Jaden some underwear and socks? The underwear is in a basket with a bunch of Ari’s clothes and the socks are in the dryer.”

Maybe I should paint the fan. Psychedelic swirls to keep me entertained.

“Thank you Eric.”

“Jaden! Kayli!”

“I can do you’re hair if you bring everything over here. I can sit up but I can’t stand up yet.”

“Yes, both of those. And the white spray bottle.”

“Jaden, you have to get dressed!”

“Eric brought them up, they are right here.”

If I’d gotten the braids done I wouldn’t have to do this every day. It’s going to be so hard to untangle.

“Good job Kayli. Do you need anything else?”

“Bye!”

“Jaden, your pants are on backwards.”

“Your shirt is going on backwards too, turn it around before you put your arms in.”

“Yes, that’s the right shoe.”

“Just grab something quick like a granola bar you can eat in the car. You’re late!”

“I love you too. Have a good day at school!”

What was I thinking? Taking something from ugly to tacky won’t help. I just need to clean the room so I can look somewhere else. 

Is the tub, the floor, or my room bothering me more? I doubt I’ll have the energy to do any of them. 

I’m sorry I called you ugly fan at least I can’t see your dust.

“Eric, you have to eat something or take something with you. It’s better to be a couple minutes late if you have to. You have work right after seminary.”

Why is that so tiring when I didn’t even get out of bed?

Ah, my legs are working again. I’ve got to get up and get to the computer for Co-Op ordering.

9:00

Could barely walk this morning so I had Eric bring me some potassium and open my window so I could watch the pouring rain. This is the view from where I lay in my bed. The rain was pelting the glass in a fascinating temper tantrum.

If you have to lay in bed for a half hour at least God gives you a good show every once in a while. I was so grateful that the grass was getting watered. We’ve managed not to kill it completely even though the one little bit of sprinkling system we have has been broken all summer. On the upside- we only have to mow about once every six weeks. 😉

I love the rain. I’ve always loved it. I love the sun too. That’s why I like it here. Not too much sun, not too much rain. I rode with Chad to Costco yesterday and waited in the car while he picked up a couple of things. Mainly so I could hang out with him without interruption and listen to and watch the rain on his sunroof.

I am so grateful that I notice the little things again. It’s like going through a dark tunnel and being surrounded by darkness for so long you almost forget what the sunshine looks like. When you come out the other side you notice everything. The trial might be hard, but the blessings are great!

I am so tired of parking in handicapped parking. I’m even more tired of not being able to park in handicapped parking because there aren’t enough spaces or a non-handicap car parked in it.

Eric, Jaden and I went to the grocery store and a quick stop at the library. The grocery store never has enough handicap parking. I rarely go. It’s just too hard in the wheelchair and the stores are so large. But Jaden had three dollars burning a hole in his pocket, we needed a few groceries, and I needed to fill Kayli’s prescription for her meds.

What was I thinking??? It was a nightmare. Jaden was all over the place, Eric was routinely blocking all the impatient just-grabbing-something-on-the-way-home-from-work people with the cart which isn’t hard since my wheelchair takes up tons of spaces as well.

I was also called to the pharmacy (it’s a long way to wheel yourself when your arms are as weak as mine!) and they can’t fill the prescription because it has to be filled within 30 days since it’s a controlled substance. No meds, I’m exhausted, and I still have errands to run without enough energy to do it.

I was really too tired to pick up my holds at the library but I needed to so off we went. My library card is still missing from sending kids in to pick up my holds so I had to go in so I could show ID. After trying to get a couple other books with my two kids in tow my nerves were shot.

There I was, having accomplished very little for the amount of time and energy it had taken, waiting for my son to put my wheelchair in the back of the van and I couldn’t stand the sight of that handicapped sign. I wanted to go places by myself again. I wanted to run quick errands again. I wanted to walk into a store like it wasn’t a big deal. I wanted my body strong again. I’m weak enough that my 13 year old daughter has to carry things for me because they are too heavy for me.

I wanted to shoot that sign, then beat it to oblivion. But the moment passed and I was grateful I had just enough energy to push the gas petal and get myself home without my son having to drive. He really does watch out for me. I’ve had to let him do a great many things for me.

You know, I thought my kids were old enough I wouldn’t have to walk in to scenes like this anymore. Nope.

This was the epiphany moment when I realized that these months of frustration with Kayli reminded me of the time before she was put on medication for her ADHD. The herbal supplements we had been trying for the last 3 months weren’t helping.

How did I not notice it earlier? I thought she was struggling with coming home after living with my brother for 6 months. I thought she was bored because she is very outgoing and has a mommy that can’t go anywhere. I thought she was struggling getting used to a new school year.

Nope, she was struggling because she couldn’t focus without her meds. I looked at that and mentally slapped my palm to my forehead. Without the meds she can’t focus enough to draw a picture or put legos together- she’d hardly done those things in the previous months.

Just the day before she had sprayed Pam cooking spray all over the floors (and her brother). She wouldn’t do her chores- more signs. It was like I needed a neon sign to finally get through to me. Poor girl. Time to get her some more medication!

I GOT TO RIDE BOUNTIFUL BOULEVARD IN THIS BEAUTY!!!!

For as long as I can remember I’ve wanted to ride in a Corvette. It’s been sitting on my bucket list for years and years. As you know, Chad tried to make it happen on my 40th and we ended up deciding to simply sit in a 2014 Corvette Stingray which was amazing as well.

However, one of the owners of Affinity Auto where we bought my van and Chad’s new car had this beauty sitting inside his showroom and offered to let us take it out so I could scratch it off my list. He practically insisted- as if I need to be pushed! (Of course I was playing it super cool while I jumped up and down inside.)

Today was the day!!! It was even more amazing than I imagined!

 This was the view from where I was sitting- which totally doesn’t do the experience justice. We were cruising along with the wind in my hair, some classic rock spilling out into the air, and the seat hugging me.

This was the view from my “window” with no roof to obscure the beautiful sky. While I might never own my own Corvette, my dream of owning a convertible was re-instilled with even more fervor than before!

I smiled so big and so much that my cheeks hurt by the time we got back to the dealership. We got to cruise around for a sublime half hour. I soaked up every single second.

Thank you, thank you, thank you to Devon for letting us go out for a spin!!!!

Friday night we headed to Idaho to see my brother Andrew. We were exhausted and late but we made it just in time for bed. On Saturday I decided to tag along with my three youngest kids to the Wagon Days parade in Ketchum, Idaho where my niece was going to be riding a wagon to support the MDA.

When we got there they asked the whole family to ride in the wagon, including us. After all, we were an MDA family as well. Ariana pushed my wheelchair across a huge dirt and gravel lot, they loaded it up into the wagon and we were suddenly in a parade.

I had no makeup on and I’d forgotten my hairspray but I didn’t care. I was having a great time!

The Ketchum fire department was amazing. They were friendly, took pictures with the kids and were just awesome. They did all they could to help me and kept thanking us for being there.

The firefighters were out there with their boots collecting money for the MDA as part of the Fill the Boot campaign as we waived and yelled from the wagon with another MDA family. In the hour of the parade they were able to raise $6500 for the MDA.

By the end I was exhausted and never did really recover. I had cancelled most of our hoped for trips and had gone ahead with this one but it took a lot more out of me than I would have hoped, probably because I’d had a bad attack earlier in the week.

Once we got back and also found out that my oldest son was sick, we packed up our stuff and cut our weekend short. We made the four hour trip home safely and climbed in our beds at 11pm. Thank you to my brother and his wife for great food, a fun parade and rides on the horse!!

What a day!! I spent all day getting ready to assemble 72 hour kits and first aid kits with the young women in our ward. Anything that could go wrong did.

I double checked all the items and found that the item that had been mis-shipped had never gotten re-ordered. Then I ran out of labels. Then I realized when I picked up the foil bags and sealer from Welfare Square I had forgotten the oxygen absorber packs.

While I was running around town with my daughter trying to pick up the items we needed my husband headed from the train station to pick up the oxygen packs. Not long after that I got a call that he had been in an accident on the freeway.

The miracle was that he, my son, and the woman in the other car were not hurt. However, the car was totaled and we only had liability insurance.

After I picked them up we tried to pick up the oxygen absorbers but the cannery was closed. We wouldn’t be sealing them today as planned.

I was able to make it to the church with the supplies fifteen minutes late but forgot the pouches so we couldn’t even get started until someone went back for them. The girls were troopers and the little band that was there worked hard to get 100 72 hour kits and 24 first aid kits assembled.

By the end of the night I was exhausted and my garage was full of kits that still needed to be sealed. All I could think about was how grateful I was that my husband and son only had red marks. This car served us well for 13 years. It was running great when it died. Chad loved that car!

My arch enemy- stairs. The barrier that people with working legs hardly even think about. They are everywhere. In the foothills of the mountains there are even more. 

Tonight it was one single stair. I had talked to the school secretary about back to school night because our school is on three levels. There is a ramp to the main level and an elevator to the second (locked so kids can’t use it). But the kindergarten and first grade classrooms are down a flight of stairs. There is an outside entrance which I thought had no stairs so I was told the door would be unlocked for me so I could enter that way.

Not only were the doors locked but there was a stair. I live in fear of stairs with my wheelchair- I don’t like being tipped so far to get up a stair. Even small lips at the end of driveways are concerning. Others don’t notice them but I certainly feel it when I have to grab on quick to keep from being dumped to the ground.

My husband had to push me over to the ramp, up into the office, to the secretary who had to get the maintenance man to meet us at the doors. Then we had to go back outside, down the ramp and back to the doors. Then Chad had to get my chair up the stair and through two locked doors so I could get into the kindergarten room. 

Today I started out feeling strong. I’d actually make it to three out of four back to school functions this week. I ended feeling weak and helpless. All around me were people walking quickly up and down stairs without a thought. I had to have the help of a wheelchair, the janitor, and my husband. All I want to do is stay home where I can pretend I’m normal.

All my worries rush back to me. What if they call home sick and I can’t drive that day? What if I can’t find someone to push me up the ramp to sign them out? What if I wake up paralyzed and can’t get my kindergartner ready for school? I know the last one is likely to happen repeatedly. 

The only thing I can do is push my worries aside. School is looming on the horizon. My kids are excited to have something to do instead of sitting home all day every day while Mom lays in bed. They will be happier there. It will be good for them. Somehow God will see me through. Somehow the kids will help each other, be independent, and make it there and back even when Mom can’t help.

August 19, 2014, my fortieth birthday. It started with the promise of test driving a Corvette- my favorite car for the last 25 years. After seeing a picture of a 2014 Corvette Stingray I decided I’d rather just sit in that beauty than test drive an older Corvette.

All I can say is WOW! That car is a work of art. Chad gave me a “drive by” so I could admire it’s sleek lines all the way around. Then as I slipped (ok, heaved myself) into the seat and sunk into the genuine leather it was like floating into a painting. I took a deep breath and couldn’t stop smiling and stroking that beautiful leather. In that moment I came alive again. The last year didn’t matter anymore.

It didn’t stop there. We caught a movie with the older kids and then Chad took me to the Pantry in the basement of Brigham Young’s home for salmon and the most divine chocolate cream pie. With a full belly he pushed me around temple square to look at the beautiful flowers, the Christus, and the little model of the inside of the Salt Lake temple. I breathed in the peace and serenity and felt alive again. The wheelchair didn’t bother me, I didn’t notice the people staring, all I could feel was the cool breeze and fading sunlight of a perfect summer day fresh after the morning rain.

I had to go home and rest up enough for the main event- another bucket list item of being able to meet a celebrity. You have to realize I’m a country girl. And I don’t watch the “popular” shows. My celebrities aren’t the same as most peoples. I had already passed up the opportunity to visit the set of Desperate Housewives because I’d never seen the show and it meant nothing to me. This time my husband arranged for me to meet Scott Christopher whom I had seen in many movies and starred in my favorite TV show- Granite Flats.

It was amazing. We met at Cheesecake Factory where over the 30th anniversary cheesecake I got to chat with Scott Christopher. I was in heaven. He was handsome, tall and looked even more beautiful in person both inside and out than on the screen. I found out I shared a birthday with his wife Liz and we got to talk about Granite Flats, kids, and normal everyday things.

I smiled more in that day than I had in over a year. The first day of my year in pictures was spectacular. It was time to truly live again.