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Ben & the Anderson Family - Journal

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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.   

Posted 2019-09-08T22:45:00Z

Late Summer 2019

A few days ago, a text arrived on my phone from my friend Autumn in Vegas demanding “I want to know how Ben is.” Okay, okay!  As summer winds down and the autumn is before us, it does seem like the right time to reflect and share with all of you.  Honestly, it feels harder to write because our days are becoming less about Ben’s spirited determination and bad ass triumphs and more about the effect of this horrible disease on him and upon the life of our family. 
I will report that the Anderson’s had a successful summer.  It wasn’t easy or without struggle, but it was good, and for that we are grateful. Ben’s summer was filled with friends, tons of swimming, tandem cycling, a road trip to Wenatchee Washington to visit good buddies, a hang-gliding venture off of Slide Mountain, and a culminating week at Rincon Point in Southern California- one of our very favorite places.  He cultivated a new and kindhearted friendship with an outstanding college kid named Myles.  However, most days, the Three Amigos—Matt, Ben and Spike— found themselves chilling together in the small quiet spaces of our house loving each other and making meaning in all sorts of ways that fill Ben’s bucket as much as is humanly, and in Matt’s case, supernaturally, possible.
Luke’s summer was action packed!  Together we crisscrossed California several times road tripping to be with family and friends in Studio City, Shaver Lake, Carmel, Santa Cruz, Carpinteria and Lake Almanor.  He camped on the shores of Lake Tahoe with Northern Nevada 4H and backpacked around Carson Pass for a week with Zephyr Point High Camp.  And, when he was home, he worked!  The Abbi Agency hired him to help around the office. The agency’s owners—Abbi and Ty Whitaker- have reached “favorite parents” status for Luke and any time he spends with their family, work or play, leaves him smiling.  We marathon watched all three seasons of Stranger Things and on August 19, Luke officially joined the Adolescent Community as a 7thGrader at Mountain View Montessori.  The school year is off to a tremendous start and Luke is relieved to know that middle school teachers “understand my personality!”
Something you may have picked up on is that there isn’t a lot happening with us as a family. Because of the completely different needs of our two boys, Matt and I find ourselves sort of functioning as single parents to Ben and Luke respectively.  While we have peace and total understanding around this reality, it is, for me, one of the saddest parts of our story.  Luke and Ben share moments where their deep love for each other is evidenced but the necessary separateness takes a toll on my heart. Loving our boys, the way they need to be loved has become something totally different than we ever conceived.  (And, my deep regards to all the single parents out there who fiercely go at the project of parenting alone. You are so strong!).  
Still, I find myself firmly footed in the camps of optimism and gratitude.  It’s harder on some days when the suck-level (nice descriptor, eh?) of our life somehow manages to increase, and things feel more overwhelming than we ever thought possible. However, I am stilldelighted in the goodness I am engulfed in— Reno and all of our incredible relationships, my extended family, the extravagant natural beauty that we are surrounded by 24/7, evening walks, an inspiring podcast, oat milk lattes and good dark chocolate, an evolving yoga practice that has taught me to breathe and settle and trust, bumping into friends around town and sharing a moment and a hug.  These are a few of my favorite things. 
As down as I may be in given moments, I also practice being thankful for the trials we face daily. Two concepts are leading me through this practice.  First, a verse in 2 Thessalonians encourages me to “Rejoice always, pray without ceasing, and to give thanks in all circumstances.” FYI, it works—things look brighter when you see the many silver linings.  And second, Rumi said, “The wound is the place where the Light enters you.”   Breathing through my own pain and fears and anxieties and trusting God to have my back—and my heart, and my boys, and my marriage— is scary and mostly out of my control at this point.  However, the faith I’ve practiced for the last twenty-seven years—with all of its twists and turns and as untethered as it can feel, has rooted me in deep understanding that “Love Wins” in the end because God is Love.  It is only by resting in the reality of Love that I can forfeit my fear and choose to trust.  Psalm 91 from the Old Testament is pretty amazing, actually.  Scattered throughout it are phrases likening our security in God to a shelter, a refuge and a fortress.  God promises to protect us and be with us in trouble, to rescue and to honor and to satisfy us.  I’m choosing to lean into this truth for Ben and Luke and for Matt and myself as we journey through these next months.  How am I doing?  Better some days than others for sure but I, and really we, keep on keeping on. 
Thank you for reading our updates and being a part of our journey.  Thank you for praying and for thinking of us.  Thank you for giving to us.  Thank you for the notes and treats we still receive in our mailbox and cooler. Thank you for the very many kindnesses we receive daily.  Thank you. [...]

Posted 2019-06-15T04:51:00Z

Father's Day 2019

Despair and Hope by Richard Rohr
Rising and dying are closely related.  Despair, I suspect is another kind of dying and another kind of pain.  It is not so much the loss of persons as the loss of ideals, visions and plans.  For people who hitched their future or their hopes to certain stars, the loss of those stars is bitter and disabling.[...]

Posted 2019-03-10T16:55:00Z

Advocacy and Agency

Update Part I:  ALD Research

It is with much anticipation, humility and hope, that we share this update on the one-year anniversary of Ben’s diagnosis of Cerebral Adrenoleukodystrophy (ALD).  We hope you are inspired to read, click and be a part of something that could end up saving boys just like Ben![...]

Posted 2019-02-04T13:03:00Z

Flying High

Ben’s week was incredible! In addition to his SKYDIVING escapade (more to follow!) his days were full of noteworthy adventures. Ben went on a ride along with Police Chief Jason Soto and had the opportunity to ride a police horse, practice using his new peace-stick, and share a donut with our Chief.  He spent an afternoon with his new best buddy Pat Cashell visiting TKO Motorsports racing around in race cars and then finished his time at the American Iron Gym for an afternoon workout. He bounced, flipped and jumped at EZ Aire Trampoline Parkwith his dad and Luke almost every day this week.  Saturday, for the first time, he completed a few Whirly Birds with our friend Kris Buttenburg at Biste Technologies.  Ben is doing great right now… he’s living his life!  We continue to be thankful and conscious of the abundant grace in our lives, for opportunities and friends like we mentioned above, and for the consistent friends and family who visit and take Ben out on adventures around town.  Thank you!
Ben went skydiving! That’s right!  On Thursday afternoon, he jumped from an airplane 16,500 feet above the earth, fell freely for 10,000 feet and landed a few minutes later to the hoots and hollers of his four grandparents, Matt, Luke and myself.  It was remarkable for so many reasons. First of all, he wasn’t afraid… at all.  Skydiving has been on his list of things to do for some time, so he checked it off his list. Second, the FAA made an exception and allowed Ben to jump—the legal age is 18—  so we are grateful to Skydive Lake Tahoe for making this moment possible for Ben. Third, Ben is really into Batman right now and the pilot he jumped with goes by “Batman,” wears a Batman flight-suit and had a Robin flight-suit that Ben was able to wear.  Awesome.
Finally, it is beautiful to witness Ben persevering on his journey.  He is a force to be reckoned with, an example of grit, of pushing boundaries and of experiencing joy and accomplishment in spite of his circumstances. No day is perfect…  none of ours are either, but he makes the most of each one in the end.  His social calendar illuminates a couple of things… that we, the Anderson’s, have a brilliant community of love and support around us and that Ben, is not only super fun to hang out with but is also offering perspective and exemplifying what it means to live with the odds and often put the beat down on those odds. 
Check out the video of Ben skydiving!   Ben’s Skydive:  January 2019
Ben Learning to do Whirly Birds:  Ben Whirly Birds
Thank you for reading our updates.  Thank you for every single prayer you pray for us and for all of the love you send our way.  It makes the difference.  When I imagine our life right now I picture a strong foundation that is the grace and goodness of God.  Resting on that foundation is our community- the meals, the errands, the check ins, the generosity of so many friends’ time, treasure and talent. We are blown away every day and hope you feel encouraged when you read our journal entries. 
Katie and Matt[...]

Posted 2018-12-31T00:30:00Z

Happy 9th Birthday Ben!

Today is Ben's 9th Birthday!  He's on a "guy's trip"  with Luke, Matt and Grumpa visiting family in Denver and celebrating his special day at the Broncos Game!  We are grateful for our friends, Tom and Nancy Kimball,  who worked to hook  Ben up with a special message from the team at half time, for Uncle Johnny and Loren for hosting and for Auntie Jane and Tim for driving up to spend time with our boys! We are mostly grateful for the grace of God in Ben's life- for that fact that his health is exceeding the expectations of his doctors, for the energy and motivation he has to live HIS life to the fullest.  Every single day he overcomes the limitations that are weighing down on him and he LIVES the life he has been given better and more passionatley than most of us ever will.  His fierce tenacity and adventurous spirit are inspirational and can motivate us to be people who make the choice to overcome obstacles and challenges in our own lives.  [...]

Posted 2018-12-05T20:54:00Z

The Anderson Family

Largest Grouper Ever! The blessing I’m counting these days is my beautiful family.  Smack dab in the middle of all that is so very difficult, are Matt, Katie, Luke, and Ben… the Andersons.   Ben’s health, thankfully, continues to maintain and so we have the gift of functioning as a family.  It is a gift.  The love and grace of God complimented by the unwavering love and generosity of our community has created a space for us to be family.  
We travelled to Key Largo, Florida for Thanksgiving.  Luke and Ben spent three days at Island Dolphin Care swimming and playing with six different dolphins and an amazing team of young people devoted to making every second count for our boys.  We paddle boarded and swam, played corn hole and built cool sand structures.  We fished in the Everglades—Ben caught a forty plus pound Grouper and a Bonnet Head shark— and took our hefty catch of snapper to a local restaurant that prepared it for us.  We ate every last bite!  On a snorkel tour, Luke and I wandered through a coral reef to the Christ of the Abyss statue.  
And now it’s the Holiday Season and we need to make different decisions about how we will navigate a time in our life that is always filled with parties and family and fun. Getting out Christmas decorations felt different too.  On one hand, I felt tremendously sad as I poured through crates and ornaments and photos and on the other hand it felt like such a blessing to have the opportunity to have one more Christmas as a family- one where Ben is capable and aware and uninhibited in the crafting of his long Christmas wish list!     
Doctors and others familiar with ALD projected Ben’s health to be far worse by now but that is not the case.  Ben continues to amaze us every day in the way he perseveres, pushes his limits, and takes every opportunity he can to be independent, to be the athletic boy he is, and to live his life in a ginormous inspiring way.  Ben motorcycled on his own across the Black Rock Playa.  He spent an afternoon with officers from the Sherriff’s Department driving in an armored vehicle and shooting several high-powered weapons.  Ben insisted on going solo to his friend Morgan’s family birthday party.  Twenty-two-year-old Morgan and two of her college friends picked Ben up.  Ben—gift in hand, walked out to the car all by himself and when he returned, tenderly declared that the party was “super fun.”  Ben still climbs the pole, rides the trainer, completes over 200 sit-ups, double bounces on the trampoline, jousts with his dad, wrestles with his brother, and steals the hearts of all his friends who spend time with him weekly. 
Most recently Ben has been skiing!!!!  Winter weather has covered our local mountain and Ben has been shredding the gnar! Training sessions with our new friend Kris at Biste Technologies have kept Ben’s legs and ski spirit strong.  Skiing cold winter snow is a most magical experience and we are so thrilled that Ben can enjoy it!  He is a great skier. 
And what about Luke? We seem to mostly focus on Ben in these updates but the life and love and wonder that is Luke Anderson needs to be celebrated.  Luke is a thriving 6th Grade boy who is fun and funny and loves his friends and new adventures.  He is developing and growing both physically and academically and as a former middle school teacher, I can affirm that he is a boy who I would have appreciated having in my classroom!  He likes to lead and isn’t afraid to speak his truth and ask big questions.  He cares about people and easily identifies special qualities about the people in his life.  He raced his cross bike this fall and is looking forward to a powdery ski season.  His life’s trajectory is forever redirected and I’d say that he is doing a tremendous job learning to balance the dynamics of a developmentally appropriate sibling relationship (rambunctious wrestling, competitive jockeying, irritating interactions) with an intimate awareness of his brother’s illness, things he and Ben can no longer do together, and the new ways maturity and independence are being required of him.  We love Luke so very much.
So, our family experience really is day by day and moment by moment.  It’s not always pretty, but it is beautiful.  We thank God for the opportunities we have to be a family whether a big trip or simple moments like eating dinner together or doing a sit up competition. It all matters!  And now we have the Christmas season upon us and it will be filled with family and friends and fun.  Please enjoy the photos and videos of our family and of our Ben living large. And please, head into the next three weeks with a heart of gratitude and appreciation for all the gifts in your lives. [...]

Posted 2018-10-19T01:56:00Z

A Boy and His Dog... and His Skateboard

Many of you knew we were on high alert last Thursday because Spike—Ben’s cockapoo adventure dog—went missing for nearly nine hours.  As Ben would say, Thursday was “a terrible horrible no good very bad day.” After an endless day of searching, driving, praying, posting, lamenting, and mostly staying calm, Spike returned to us by way of our neighbor Ramon.  He saw Spike loose in our neighborhood Thursday morning and because of Spike’s “firedog” Halloween costume, was not able to see his dog tag. Ramon kept Spike safe and returned him to us after his work day.  Thank you, Ramon!    
Before Spike, I wouldn’t have considered myself to be a “dog person.”  But now I get it.  Spike has enriched our lives and from the moment he met Ben, has become his steadfast companion.  They are inseparable.  You see, Spike has been with us since the day after Ben’s diagnosis.  My brother showed up early the morning after we learned about Ben asking what we needed and, without hesitation, I declared that we needed a puppy.  Spike, the cockapoo adventure dog, was delivered later that afternoon as a gift from my parents and my brother’s family.    
Spike does just about everything with Ben and hanging with Ben is not for the faint of heart.  He went to school daily with Ben last spring, flew to LA and helped Ben through several doctor appointments.   All summer, shoved into a doggie backpack, he zoomed around on Matt’s back while Ben steered the scooter.  He runs alongside the ATV when Matt, Ben and his buddies venture into the hills around town. He bounces on the trampoline while Ben counts how many front flips he can do in a row (Today was 45.).  Ben carries all 15 pounds of Spike as he climbs the pole and chills with him in the fort.  Spike plays family football, joins the boys on their evening skate board exploits and snuggles up to Ben at night or when he, very infrequently, rests. 
Most recently, Ben and Spike completed two nine-mile playa crossings whilst camping on the Black Rock Desert.  Ben rode his bike and Spike ran faithfully behind his best buddy.  Matt texted me the photos and video of my beautiful Ben, who can no longer see, riding his bike with so much joy and freedom across this stunning and unusual slice of creation.  He had an amazing time and guess what, they are heading out to the Black Rock again tomorrow.
… and his skateboard
Ben never ceases to amaze us.  He is blind skateboarding!... with both a deep understanding of his limitations and his tenacity to overcome them.  He inspires me.  I hope you are inspired too.  I hope you can choose to see beyond the little things that discourage you during your day… we all have those things.  I hope you can see the strength of heart Ben is sharing with us all as he journeys down his path.  I hope you can be encouraged to overcome your adversities, to tackle the problems, to live in the moment, to not sweat the small stuff and to enjoy and to love and to forgive all of the people in your life and to find joy.  We are learning the hardest way possible that life is short.     [...]

Posted 2018-09-13T17:51:00Z

Positive Thinking and Determination

Ben reminds us about the power of positive thinking and determination!  I felt inspired to show him off.

Yesterday Ben decided he wanted to get Spike up into the fort WITHOUT any help.  He said “Dad, I can put him in his back pack and climb up the pole.”   This was at 5pm, and mostly towards the end of the day Ben is tired.  I told him, “Awesome idea Ben, it might be hard right now, but I’m sure you got it in the morning.”   Honestly, I wasn’t sure about the success of this either way.  [...]