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Love & Strength for the Anderson Family

Matt and Katie's mighty 8-year-old Ben was diagnosed with a rare terminal genetic brain disease called X-link Cerebral ALD on March 16, 2018. Your loving support and hea[...] read more

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Posted 2019-11-18T03:34:00Z

American Road Trip

“If you don’t know about pain and trouble, you’re in sad shape.  They make you appreciate life.” Evil Knievel                                                                                                                
 
“Don’t tell a kid what is right and wrong.  He knows what is right and wrong.Find out what his attitude and aptitude are and try to help him get where he wants to go.”  Evil Knievel                                          
 
"If a man can bridge the gap between life and death, if he can live on after he's dead, then maybe he was a great man."  James Dean
 
 
If you live in Reno, there’s a decent chance you’ve seen Ben driving a Pink Honda Metropolitan scooter around town with me giving him three verbal commands: “Clear!” “Coast!” and “Stop!”  We’ve logged over 2000 miles in 15 months— cruising around town, jumping speed bumps, and running Spike at 25mph.  It has been a good outlet for him.  This summer into fall, as Ben’s legs declined significantly, he gravitated more and more towards the scooter and his tolerance for longer rides increased.   We took his grandfather’s Harley to Tahoe a couple times and Ben really enjoyed it.  It didn’t take us long to figure out we were ready for something faster.  Heck, something, he insisted, we could drive as far as Alaska or Florida.
 
So okay, what do Ben Anderson, James Dean and Evel Knievel all have in common? 
A.    Relentlessness
B.    Thrill seeking
C.     Favorite bike is a Triumph
D.    Good Hair
E.     All of the above

 * all of the above  
 
After a couple months of figuring out what the best bike for our adventures would be, we landed on a Triumph Trophy and I located one in Tucson, Arizona.  So, why not figure out a way to get to Tucson, ride to Los Angeles, hang with cousins for a week, catch a Bucks vs. Clippers game, and road trip home via Death Valley National Park and Highway 395… and bring Spike!  No problem!  Let’s do this!
 
My last motorcycle was a 185 Honda Enduro… 30 years ago.  Additionally, Ben can’t see, can hardly walk, and has a really hard time waiting —hmm, this should be another good test of my mental endurance!  I found a harness to help hold him on the bike and duct taped his feet to the foot pegs.  Spike rode in a vented backpack that I wore forward facing on my chest.   I promised Ben we would split lanes in LA traffic, get it up to 110mph (with it loaded down, I didn’t feel solid about pushing beyond 110), and that he could drive on the back roads.  He did all of it… he made it…. Over 1,000 miles and 17 hours on the bike.  
 
There are many people to thank for helping us make this adventure possible.   Thank you, Herb, for the lift to Tucson.  Thank you, Michael and Mariana, for all of the help getting the motorcycle. Thank you, Pavilack Family, for your hospitality in your amazing LA oasis. Thank you, Rona, for hooking us up with the box at the Staple Center and for the suggestion to try cryotherapy.  Ben loved both! Go Bucks!
 
As I write this and reflect back on getting ready for this trip exactly two weeks ago, I’m reminded that we all know there are things that can happen on trips that can be surprising, both good and bad (thankfully we had good).  Ben’s doctors could add to those “things,” a list that might even make Evel Kneivel pause.   We were able to do this trip because Ben’s flow is in this way, and I know if I’m strong and flexible, and prepared mentally for as much as I can imagine, and serve his needs, that we can be successful regardless of how it all goes down.  With that mentality, I didn’t plan any details, I never reserved a hotel room and I didn’t know specifically what highways we would travel—I just had a general sense of what and how, but the details and realities of the day were flow, deep breathing, and prayer.  It is hard to have a lot of stuff on a motorcycle, which required some great interactions with gas stations, grocery stores, rest stops, fast food, the border patrol, and just plain stopping on the side of the road.  It is interesting to reflect on the trip because at the same time it is so challenging to accommodate Ben, and make everything happen, it is more inspiring to think about what it must be like for him, how hard he works to keep his directive and spirit intact.  Ben wants to make it—he wants to grind it out and get there and say he did it.  This is when I very easily say that he is the one to be commended.  His doctors can’t believe him and what he has accomplished.  I can, because I see it in him every single day.  You do too, you read in these updates.  He is relentless, his life force is exactly that, …a force.   
 

PS:  If you want a visual of the specifics how we travelled, watch this video: Three Amigos ride the Triumph
 

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