Thursday, December 19, 2013

Christmas Letter 2013

Merry Christmas!

SSSHHHHHHH…….. Don't tell Amy I am writing this. She banned me 15 years ago, while writing thank you notes for wedding gifts, from writing all future family press releases.… Perhaps because it took me 15 minutes to write "the crockpot you gave us is cool, Thanks”…She also knows it's a challenge for me to summarize a year in a single letter because:

  1. ·       I feel, simultaneously, like I have nothing to say and too much to say
  2. ·       I want to sound wiser and funnier and humbler and handsomer than I actually am
  3. ·       I feel weird laughing and crying by myself while I write (I keep checking to make sure no one's watching)
  4. ·       Some of the Christmas cards you people sent us are major league material… My competitive juices are flowing… We hope to dominate this year's card competition by "executing the fundamentals", "leaving it all on the field", and "wanting it more than the next guy." (if I had a cowriter to celebratorally headbutt, I would!)

Here goes: This year has been an incredible year for our family. Due to The Project, we've continued to live with a higher degree of uncertainty (where we'll live, who we'll meet, falafel or schawarma?, etc.) than in years past. This uncertainty has continued to require us to exercise faith and advance (sometimes gracefully, sometimes not) through a minefield of our own fears. Although it's difficult to tell at times whether we’re actually making forward progress, at least we've familiarized ourselves with the location, size, shape, trigger apparatus, and post-explosion smell of more fear-mines than in any other year J.  Words cannot express our gratitude to those who, along the way, have darted out onto our minefield to deliver emotional or physical help without stopping to tell us that most of our mines aren't really real.  Perhaps next year the hovercraft I’ve ordered will change the game entirely…allowing us to begin a lifetime of returning the favor.

Individually, each member of our family has grown and seen miracles.

Seth: Though this year was difficult physically, it was also one of my favorites!  The highlight of my year was our families experience in Israel. It was surreal to take the kids to the place were Amy and I met in 1996…to see them have their own experience as they followed, primarily, Amy's unstoppable spirit of adventure and example of fearlessness (they have no idea Amy even has fear). Though I'm sure my kids will not remember many of our family experiences in the Holy Land, I hope they will remember some piece of the experience (people, ancient walls, modern walls, tombs, valleys, churches, seas, food, and feelings). More importantly, I hope they will remember that their parents, though flawed, sought to live by faith.

Amy: If Amy was the MVP of our family last year, she, this year, has forever solidified her place in the Matriarch Hall of Fame: She took four kids, a wobbly husband, and a mother-in-law to Israel.  She gave up her space in the garage, encouraging Sam and me to fill it with a non--driving 1968 Camaro. She dealt gracefully with me while I was pharmaceutically not myself due to a one-of-a-kind drug trial. She did all of this while continuing to look outside her family and to serve others with her camera (beautifully) and her example (unbelievably!). I believe we can safely say that this was Amy's most difficult year yet. I believe we can also say it was her best--in my eyes she has never been more noble, pure, or worthy of adoration.




























Sam (13): Our boy is officially a teenager. Highlights of Sam's year include his first year of lacrosse, being one of the high scorers on his soccer team, getting braces, making the middle school's JV basketball team, and beginning work on a 1968 Camaro. A day doesn’t go by when he doesn’t steathfully sneak into the garage and burn, cut, dremel, or nail something. He is working on what Amy calls his “Boy Cave” (ie his room) and has asked for a mini fridge filled with his favorite drink, Hubert's Limade (the drink he would buy daily in Hawaii when we lived there). Funny kid. His favorite Israel experience was walking through the old city, which makes us think he might actually remember and "get" some of the experience.
















Ellie (10): Highlights include making and excelling on the local "Select" comp soccer team, personally ensuring Jacob's safety while in Israel, dancing ballet and jazz both at classes and all through our house, and never running out of energy, ever. She loved this summer's travels especially painting herself in Dead Sea mud and our RV trip through Grand Teton and Yellowstone National Parks.  She has a wicked quick sense of humor and is the most likely person to get me laughing until I cry. She is so similar to Amy physically and emotionally…I strongly suspect she's a clone.










Jayne (7): still our most high maintenance child. That is said with the utmost respect since the competition is fierce at our house. She also loves to dance, take gymnastics, and play some serious left footed soccer. She has decided that her new sport is basketball. She wishes everyday was Wednesday so she can go to basketball practice. A play date every day would almost be satisfactory for this girl. She is extremely creative and can whip up some impressive art, or create a game with Jake and all her stuffed animals. Travelling with little kids in foreign countries is always a bit nutty. Jayne was kissed and her blond hair petted as we walk through the old city of Jerusalem. She told me that they must like her. She won’t remember much of our experience there but she will remember that we were together.


























Jake (3): keeps us rolling with his extreme vocabulary and phrases that he uses but that usually aren’t quite right. Right now he continually says, “Are you kidding me?” and “Come on!” He is lean and sinewy. This summer on our Yellowstone RV trip, the bathroom wasn’t working so Sam taught Jake to pee in a Gatorade bottle. Later in the summer at home, Amy found one of her water bottles filled with suspicious yellow juice in it. I guess we forgot to tell him when we pee in bottles and when we don’t. We continue to call him our “free range child.” Regarding Israel, if you ask Jake where he learned to swim, he will tell you  “The Sea of Galilee.” The Galilee was definitely his favorite experience, though he often stated, "LOOK, it's Lazarus tomb!" (old walls DO start to look similar). I'll never forget watching as he finished a photo op with two Israeli soldiers and asked them respectfully, "Do you shoot good guys?" He will probably only remember what we will tell him about our Israel trip, but we are happy to have those many memories to tell him about.









Okay, this is Amy taking over. Seth had done exceptional as he always does writing (except when it comes to wedding thank you notes). When it comes to Seth, its hard to put into words the depth of love, respect, amazement that I have for him. It has not been an easy year for him, but it has been one of many blessings. Driving home the other day, I was overwhelmed by the blessings that we have been given this year. It has been a year of faith, hope, adventure, endurance, strength, joy, and love. Such an exceptional year is credited to a three-part blessings- a loving God, our families, and our friends. Yes, it is all of you reading this. This past summer, some friends had a fundraiser for us to help us cover the cost of a medical trial. A goal was set and met in 24 hours. The outpouring of love and support for us overwhelmed, refueled, and humbled us. This was just one example of the many acts of service and support give to us this past year. Thank you all for your continual prayers, thoughts, and actions of service to us. We can’t thank you enough. At this beautiful time of love and giving, we hope you know of our love for you and the beautiful love of the Savior whose birth we celebrate at this Christmas time.




Tuesday, December 3, 2013

Side Project

So… I've always been the type of person to overthink things. I can typically talk myself out of what other people would see as "fun". An example of this is my life long interest in classic cars. In fifth grade, during a school magazine drive, I signed up to a two year subscription to Popular Hot Rodding magazine. Ever since then I've been able to identify the year, make, model, and modifications for an unusual amount of cars (for a poser :)). Add to this an addiction to car shows, and a daily craigslist search for muscle cars, and you would think that I would have rebuilt multiple cars by now. The reality of it is, however, that I only recently sold the same four-door Honda Accord that I'd driven driven for the last 16 years.

On September 24th, I received my first email ever from my 12-year-old son… It was entitled "Sam's car":
Hey Dad,
hows it going? it going great here. I want a Camaro. specificly a 1967 rs ss Camaro
anyways =) i found a bunch of them on craiglist check out the links
See you later.
smiley faces your son,
                           Sam
This email was followed by 10 craigslist links to 10 cars, none of which was for sale for less than $40K…No father has ever been so proud :-). Sam's interest, combined with my growing sickness of my  own poser-ship, combined with Amy's encouragement, combined with the willingness of a few insanely gifted friends with real (versus poser) car experience, lead Sam and I to make the following purchase:


The car's arrival made quite an impact on the neighborhood!



As you can see, the car is on a trailer.… It was not running at the time we picked it up, but, thanks to the tireless work of a couple "uncles / car friends" (we've had to be specific about what we call these guys because, otherwise, Jake calls them "Dad's boyfriends") it's on its way to road worthiness.

Though our family CLEARLY has a number of other things on our plate, I'm finding this "side project" to be a much needed distraction from The Project…Sam and I are clearly in over our heads, but are very excited to have a project to work on together.  Many thanks to Amy for being the rare type of insane wife/mother that encourages this type of thing! Many thanks to Uncles Tim and Tyler for an epic retrieval trip (full-length feature film expected in 2014) and for their understanding, mentorship, and wrench time!

Wish us luck!… Better yet, bring your coveralls and come get dirty with us :-)

Seth

Friday, November 22, 2013

Medical trial update

A quick of medical update: I'm happy to report that, after adjusting one medications level, I have seen an improvement in my leg function… Still not back to pretrial levels, but I'm now using the wheelchair mostly as a walker…we're taking this as an indication that the negative side effects of the regimen can be reversed! Based on this finding, we're giving the trial a few more weeks and one more round of expert examinations before deciding whether to continue or stop.

 Best,
Seth

Thursday, October 31, 2013

Medical Trial Update

Hi everyone,

Month one of the immunosuppression drug trial is now behind us!  After a rocky month that included a couple of falls and a rapid decline in leg strength (I'm currently using a wheelchair for my own protection :-)), Amy and I attended my first checkpoint with the University of Utah team on Monday the 28th. My neurologist agreed that the unusually rapid decline most likely results from the drug regimen itself. What is unclear is which of the five medications is having the undesired effect.We do have a leading candidate thanks to our discovery that one key drug, known to have some neurotoxicity, is concentrating in my blood in a way it was not expected to. Though we have already begun to talk about whether and how to bring the trial to a close, I'm considering it a silver lining that the drug trial IS having an effect!… this is something that was not a given at the outset of the trial... Because there is no known cause for ALS, including no known way to speed up or slow down disease progression, the fact that my symptoms have progressed dramatically is actually incredibly exciting AND very scary.

We hope to provide further updates soon as we work through the adjustment and or close of the trial. Sincere thanks to all of you for your ongoing support.

All our love,

Seth and Amy


Wednesday, July 10, 2013

The Last 24 hours in Israel

So with 24 hours left in Israel, we were packing our bags and cleaning the house. But at about 1 p.m., I had had it. No more packing or cleaning for me. My kids had yet to swim in the Dead Sea and we were less than an hour away. "Put on your suits kids." So we left our bags half packed and off we went. We accidentally passed the first Dead Sea Beach, and thank goodness, because another kilometer up the road was Qumran. 

The Home of the Dead Sea Scrolls.

We watched a short film about the Dead Sea scrolls and the Essenes. 


Then we stepped out into the 100+ degree weather to walk around Qumram. Wow it was so hot. I was suprised the kids lasted as long as they did.


It's hard to describe the bare hot land. This picture helps visualize what its like. 

You can see the Dead Sea in the back right of the picture. 

So very hot kids.


The board walk took you through the old city of Qumran. The kids were obsessed with the Cisterns and "hot tubs," (the baths). I am not sure I knew what a cistern was at their age, but I am glad they do. 








Me, overlooking the canyon.


Here are the three kids in front of the cave where a shepherd boy threw a rock and heard pot break. It was the discovery of the Dead Sea scrolls... An enormous religious and historical find in this century.







And after 30 minutes in the heat- Ice Cream. It melted so fast, no one had a chance to finish their cone before it melted. 


Then we made our way to the Dead Sea


It looks inviting. But it was salty. The girls came out crying- too salty. 

Sam floated around for a bit.


But the real fun was with the mud. The Dead Sea mud is supposed to be rich with minerals good for the skin. So everyone paints themselves with black mud. 


Including the whitest of them all- Jakers!


A little bum creese there!




 Els and Jayne getting painted.


Super boy! Sam getting painted by Ellie and JJ.


 Getting covered.


Almost done.


Jake reapplying.



And he is finished.


 Jayne covered in war paint.


Ellie, looking like a warrior.



Crazy girls.


 The kids painted themselves several times each. There were showers on the beach and after coating themselves sufficiently, they would wash off, and do it again. 


Who wouldn't be happy painting themselves in mud?


 Seth chillin' on the muddy shore.