A little bit Utah, a little bit Idaho

We officially made the eight hour drive to Idaho sans choking fits from Ben and screaming from Emmy. The drive did, however, include large amounts of soda, chewy sweet tarts, and way too many episodes of Dora the Explorer. Is it pathetic that not only can I not imagine how the pioneers traveled by handcart, I also can't imagine how parents used to travel without DVD players? All joking aside, it was nothing short of a miracle that we made the drive without any problems. Ben coughs and chokes quite a bit now, and it can get a little scary. I am so grateful that he made it eight hours without one coughing fit. My mom told me she had been praying for angels to attend our drive, and I know that they did as it is highly unusual for Ben to go that long without a problem.

Idaho summers are awesome...I have actually gotten to wear some of my sweatshirts again. It is so nice to be able to spend time with Ben's family. It feels very celebrity-ish having a winter home in Saint George and a summer home in Idaho. I definitely enjoy it.

As I mentioned earlier, Ben has been coughing/choking a lot. Sometimes it is on fluids, sometimes it is on saliva, and sometimes there doesn't seem to be a reason. It takes a lot out of him to be coughing so much and neither of us has been sleeping much. He recently started some new medication that seems to be calming things down. Emmy becomes very territorial of Ben when he is choking. She asks him if he's okay, gets him water, hands him his "pickle" (a breathing tool Ben uses), and forces numberless  cough drops into his mouth. It is so sweet to see her concern for him and watch her take care of him.

The feeding tube is going well. We are also in the process of getting a speech-assistive device called a Dynavox. Basically, it is a computer that will speak for him and is controlled by the movement of his pupils.

Some quick photos from the last month...

Swinging with Grandpa Mike. Unfortunately, Emmy has started wearing her helmet ALL the time again. 

Bon Appetite! This is what we put in Ben's feeding tube. Hooray for no dirty dishes after his meals! 

 My new epitome of laziness...taping Ben's feeding tube to his shirt 

while I feed him so I don't have to hold it. Good thing my husband's a good sport, and my dad keeps lots of medical tape at his office. 

I love the view of the Idaho Falls Temple. Emmy does too. 

 Helping dad get a drink after a coughing fit. 

 Emmy has graduated from her tricycle to a bike with training wheels. She loves riding it and begs me to run in front of her while she tries to catch me. Isn't the point of her bike to wear her out, not me? 

For family night this week, we went to Chic-Fil-A's Pirates and Princess night with free princess hairstyling and face painting. Emmy loved having her hair done until they burned her ear with the curling iron. I wish they would have done my hair too. As my niece Lily so tactfully puts it, "Aunt Jena, your hair is always in that ponytail." 

We are prepping for the Fourth of July with sparkler practice. A good idea since appropriate sparkler use does not run in Emmy's genes... as an eight-year-old I dropped my sparkler once and burned a huge chunk of grass in my parents' front yard.

Apparently my ability to light sparklers ranks right up there with my ability to hold on to them. All these matches for only two or three sparklers.  

Happy Birthday Emmerson!

Emmy turns three this coming Sunday, but because we are moving to Idaho for the summer we decided to celebrate with friends and family in Saint George before we move. Her cake, of course, had to be Dora the Explorer. I debated about whether or not I could make a recognizable Dora out of frosting and finally decided I was just going to stick Dora figures on a funfetti cake and call it good. The party was lots of fun and a good chance to see our friends one last time before we leave for the summer. We are heading to Idaho in a couple of days and will keep you posted on life up there.

Un-Stuffed

When we decided to move in with my parents almost two years ago, we assumed the move would be temporary while we built a home that would be wheelchair accessible. So we packed up our things thinking they would only be in storage for a couple of months...meaning we pretty much threw/stuffed  everything into a storage unit and pulled the door shut behind us. Eventually we realized that the cost of building would be much more than we had anticipated, and our decision to stay with my parents became a permanent one. 

We have wanted to go through our things and pare them down, but kept putting it off. Finally, Ben and I decided that it would be much easier to go through our things while Ben is still able to be part of the process. So over the last month, we have been in the process of un-stuffing ourselves. Ben's sister and I spent hours pulling out and opening all of our boxes and deciding what few things to keep. Lots of family and friends helped us move, sort, price and sell all of our things at a massive yard sale. It was a lot of work. I had no idea it would take that much time, effort and help. By the end, I was praying our storage unit would catch fire so we could just collect insurance on our things and take a nap :) No such luck. 

The sale was last saturday, and we sold/donated the majority of our belongings. Was it weird to say goodbye to so many of our things at the same time? A little. It is also incredibly freeing. I have realized how many things we had that didn't do anything to improve our quality of life and were just taking up space, time and money. 

A few months after I had Emmerson, Ben and I ate at Outback Steakhouse. I ate and ate and ate. When we left, I bent down to tie my shoelaces but was so full it hurt. I was shocked. I had no idea that was even possible. I went home with untied shoes and vowed I would never again eat that much. 

I opened our storage unit to begin the cleaning out process and realized it was so full of stuff it wouldn't have been able to tie it's shoelaces either. I also realized that we have been living for the past two years without these things and life has been just fine. I've decided I never want to have so much stuff that I can't enjoy life. I don't want to spend my time earning money to buy things that will take lots of space to store, time to maintain and really don't add much to my happiness.  I am grateful for the chance I have had to learn that life isn't about stuff. Life is about people, experiences and coming closer to our Heavenly Father. Everything else tends to get in the way. All in all, it feels good to be un-stuffed. 

 My awesome mom and I decided we wanted to have a "Target" yard-sale: classy, organized and always fabulous. She made me the cutest tags to use. Of course, the tags were probably worth more than what we were selling, but they looked amazing! 

 Pre-sale at 7 a.m.

 Emmy was not happy to wake up and find a lot of her toys going home with other kids...

The adults worked the cash register....

while Emmy worked the crowd.

Ben's Talk...Finally

Here is the transcribed copy of Ben's talk. Thanks to Michelle for typing it up :)

*********************************************************************************

One of my absolute favorite things to do was to go running. I would wake up early in the morning when it was still dark outside and run. I would usually go six days a week whether it was winter or summer, rainy or sunny. I loved how it gave me a chance to relieve some stress and clear my mind. One of the first things I stopped being able to do after I found out I had ALS was running. My left leg was too slow and weak and would cause me to stumble.

One of my other favorite things to do was to ride my bike. I didn’t love riding my bike as much as running but I really really liked it. A lot of days I didn’t want to give up my run but I wanted to ride my bike so I would run early in the morning and ride my bike to and from work. When I lost my ability to run I traded my early morning runs for bike rides. It was a lot of fun but not quite the same. Early in the morning when I would get on my bike I would often feel a little bummed that I wasn’t running and I would say to myself “at least I can still ride my bike” and it would cheer me up a little.

There was a period of two or three weeks that I didn’t get on my bike at all. Then on a cold morning I woke and got all suited up for a bike ride it took awhile because I was slowing down and it was cold outside. I finally got ready and pulled my bike out of the garage and I went to get on it and suddenly I fell over. At first I thought, “that was strange”, so I got up and tried it again and then I fell again. I tried getting on that bike four times and fell every time. I realized that when I swung my right foot over the back tire my leg wasn’t strong enough and so my foot would catch on the tire and cause me to fall. After four times I realized I wasn’t going to be able to get on my bike. It was a real hard moment for me. And then I put my bike away, walked inside, walked up our stairs. I showered myself, brushed my own teeth, shaved myself, got myself dress, fed myself breakfast, packed my own lunch, drove myself to work, worked all day, fed myself dinner, did the dishes, changed diapers, held my little girl, and laid next to my wife when we fell asleep. As I look back on that day the only things I don’t care about doing anymore are running and riding my bike. It is often far easier to focus on the things we can’t do, don’t have, or don’t do well than it is to be grateful for what we do have, what we can do, or what we can do well.

My talk today is on gratitude. President Monson said, “We have all experienced times when our focus is on what we lack rather than on our blessings. Said the Greek philosophy Epictetus, ‘he is a wise man who does not grieve for the things which has not but rejoices for those which he has’.” President Monson also said, “if ingratitude is to be numbered among the serious sins than gratitude takes its place in the noblest of virtues.”

I wanted to talk today about how to gain gratitude. One way we can increase our level of gratitude is through prayer. President Monson said, “sincerely giving thanks not only helps us recognize our blessings, but it also unlocks the doors of heaven and helps us feel God’s love.”

Elder Bednar tells a story of when he was President of Ricks College. His family had a dear friend pass away and an apostle came to stay at their house the same day. The apostle didn’t know about the Bednar’s loss. And at the end of the day he asked Sister Bednar to say a prayer, but told her only to express gratitude. Sister Bednar agreed but was concerned not being able to pray for their dear friend and his loved ones. As she prayed and expressed gratitude Elder Bednar said that their family received far more peace and comfort and revelation concerning the loss of their friend than they would have in a typical prayer. Their expression of gratitude helped them to feel God’s love.

Another way to increase our level of gratitude is by having realistic expectations. Sister Hinkley was once asked what the secret was to having such a long and loving marriage. She replied that she learned to “lower her expectations”. By doing that she was able to love her husband for who he was rather than be ungrateful for who he wasn’t. If we expect ourselves to have the nicest car or biggest house we may find ourselves so disappointed if we don’t have the biggest house that we are no longer grateful to have a house at all.

Elder Uchtdorf  said, “we are like passengers on an airplane who spend their time grumbling about the size of the packet of peanuts while they are soaring through the air far above the clouds, something ancient Kings would have given all they possessed to try and experience just once.”

Let’s not let our unrealistic expectations make us ungrateful for some of the cool things we might experience.

Another way to increase our level of gratitude is to stop and smell the roses every now and then. To take a minute from our busy lives and think about all of the blessings we have and how much we truly have to be grateful for.

When we gain an attitude of gratitude our priorities will fall into order. President Monson said “Do material possessions make us happy and grateful? Perhaps momentarily. However, those things which provide deep and lasting happiness and gratitude are the things which money cannot buy: our families, the gospel, good friends, our health, our abilities, the love we receive from those around us. Unfortunately, these are some for the things we allow ourselves to take for granted. The English author Aldous Huxley wrote, ‘Most human beings have an almost infinite capacity for taking things for granted.’”

In an effort not to repeat the ingratitude I expressed the day I fell off my bike I’ve tried to thank Heavenly Father for what I do have. I don’t want to look back and think “if I could only drive my wheel chair by myself” or “if I could only still talk” and realize that I didn’t appreciate it when I could do those things.  As I express gratitude for the things I can do now I find that I have an increased level of gratitude.

I know my Heavenly Father lives and loves me. I know that Christ lives. I want to publically thank them for all that I have because I have so much. In the name of Jesus Christ, Amen.

Peace that Passeth All Understanding

The last four days have been extremely difficult. Friday night, Ben's cough started getting much worse. He couldn't stop coughing, would start to slide out of his chair and, after the coughing fit finally subsided, was left completely exhausted. He was too tired to eat or drink anything. On Saturday morning, we noticed that his cough was no longer just a dry cough but seemed to indicate pneumonia or atelectisis. My wonderful father, who is a physician, helped Ben get admitted to the hospital. Chest x-rays and lab results confirmed early stages of pneumonia which can be very detrimintal to patients with ALS.

Ben felt completely miserable. He was too tired to say anything other than an occassional "yes" or "no" and even nodding his head was getting difficult. He was pale and sluggish and couldn't get comfortable. It also made him really anxious to be in the hospital since it was his first time ever staying there. It was so hard to seem him like that. I would climb into his hospital bed with him and we would both cry. The worst part of all was not being able to do anything to make Ben feel better. I hated the feeling of complete helplessness.

We came home from the hospital yesterday. Last night, Ben's sister slept in our room with Ben so I could get some sleep. I went to an upstairs bedroom and began to pray. I felt so sad, so discouraged, and completely heart-broken. I wanted to pray for peace, but didn't think feeling better was possible. After all, how could I possibly feel okay when Ben is sick, tired, miserable and ominous thoughts of what lie ahead constantly bombard us?

As I was praying, Phillipians 4:7 came very clearly to my mind: "And the peace of God, which passeth all understanding, shall keep your hearts and mind through Christ Jesus."

I was reminded that because of Jesus Christ, we can feel peace regardless of what is going on around us. It doesn't make sense that I would be able to feel peace with everything that is going on in our lives right now. But last night I realized that Christ's peace can come to us even we can't possibly think we will ever feel better. As I finished praying and studying the scriptures, my circumstances did not change. Ben is still sick and we still are making lots of new adjustments that bring stress and sadness. But despite all that, I felt peace. I can't explain it. I can't even understand it. My mind told me I shouldn't be feeling okay, but I did. I still am.

Peace doesn't come from external circumstances. Peace comes from our personal relationship with Jesus Christ and obedience to His commandments. Because He is constant, peace is always possible.

Feeding Tube Placed

Ben had his feeding tube placed on friday morning. The procedure went well, and we were in and out of the hospital in two hours. He can still eat regular food if he feels like it, but most of his nutrition will be put directly into his stomach through his tube.

After he got home, he started getting a bad cough. Friday night was rough, and he started feeling really sick, couldn't stop coughing, and couldn't eat or drink. He was admitted to the hospital saturday afternoon. Lab work and a chest x-ray showed the beginnings of pneumonia in Ben's lungs which can be dangerous for someone with ALS. They placed a PICC line (an IV that goes up his arm and into his chest and can be left in place for up to a year) and have been giving him fluid and anti-biotics through it.

The doctor came by this morning and said Ben is doing much better and can go home this afternoon. Yea! It's been a tough week for lots of reasons and ending with a stay in the hospital has wiped us out. Hopefully next week is more relaxing.

Emmy and Ben

Emmy loves catching rides on the back of Ben's chair. She also loves chasing him around the house on her tricycle. 

Helping fix Ben's wheelchair

Still no word on Ben's surgery date. We are waiting to hear from the hospital. We'll keep you updated.