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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.

It usually happens slowly as we recognize unfulfilled dreams and as we gradually face our own impotence and the “sin of the world” (John 1:29).  We are forced to let go of images: images that we built in our youth, images that solidified and energized our own self-image.  The crash of images is experienced as a death of the spirit, as a loss of hope, as a darkness almost too much to bear.  Many, if not most, become tired and cynical while maintaining the old words that have become cliches even to themselves.

Spiritual growth is the willing surrender of images in favor of True Images.  It is a conversion that never stops, a surrender that never ceases.  It is a surrender of self-serving and self-created images of self, of others, of God.  Those who worship the images instead of living the reality simply stop growing spiritually.  In this light, the First Commandment takes on a whole new power and poignancy: “You must not make for yourself an idol of any kind or an image of anything in the heavens or on the earth or in the sea. You must not bow down to them or worship them, for I, the Lord your God, am a jealous God who will not tolerate your affection for any other gods.” (Exodus 20:4-5)

It seems that many people, religious people in particular, would sooner relate to images than to the reality where both despair and God lie hidden.

Until we walk with this despair, we will not know that our hope was hope in ourselves, in our successes, in our power to make a difference, in our image of what perfection and wholeness should be.  Until we walk with this despair, we will never uncover the real hope on the other side of human achievement.  Until we allow the crash and crush of our images, we will never discover the real life beyond what only seems like death.

I (Matt) have probably read this a hundred times in the last year and wanted to share it.  I know it’s deep, but I’m in the deep end, and these words resonate deeply.  I suspect only those who have experienced despair will relate.  For everyone else, this is a good one to keep somewhere for when despair does come.

There isn’t a day that goes by where we fail to reflect upon the kindness and generosity of everyone who has supported us and continues to help in so many different ways.  Thank you so much. 

Three months have elapsed since posting a communication and there is so much to say.  I have so much to share—so much struggle, so much sadness, so many difficulties every day, but for now this continues to be about Ben and the many positives in our lives.  I’m grateful for my health and ability to be with Ben physically.  Ben is slowing down and it has become noticeable in just  the last month.  He had to slow down.  I am so proud of how he has courageously taken all of this on.  Ben has been going hard and fast for the last fifteen months (without sight), racing against time and staying distracted from his discomfort.  I'm so glad he's  made it this far without an injury. In addition to the physical demands on me, mentally, the challenge on a daily basis is mountainous.  I have climbed my fair share of mountains, and mentally, they pale in comparison to navigating Ben every day.  

Fifteen months have passed since Ben’s diagnosis.  It is very demanding keeping up with him, keeping him safe, and being alongside him as he outlets his energy, discomfort, and expresses his keen determination to do all the things he is doing. For Ben, what is happening is extremely uncomfortable—specifically what his brain is seeing. He describes strange images, dots, and blurs all over the place so he distracts himself from his constant, strange, and weird sensation through physicality and continual motion.  This is why Ben can’t sit still or wait for anything.  I have learned intimately about what it is like to lose your sight and I’m also learning a lot about mental health.  Ben is experiencing more than just physical limitations.  The demyelination of his brain is causing insanity and periodically, the inflammation results in a very angry outburst.  Ben’s physicality is changing too.  He doesn’t have the fourteen hours per day of charge any longer.  He has it mentally but not physically.  His legs are getting wobbly and his balance is struggling. All of this, understandably so, makes him grumpy but he continues on as hard and as fast as he can, in the same spirit and determination of the last fifteen months!   I wonder how many miles I have run, sprint, walked and jogged holding Ben’s hand…it tires me to consider.

Despite all of this, Ben’s days are still more good than bad because we are committed daily to filling his bucket with love and friendship and movement and adventures.  So many of you are integral to that bucket being filled and for that we are so very thankful.  Here are some of the things Ben has been up to in the last three months:

·      We Skied Twelve Times this Winter!  In a post last year, I talked about my last ski day with Ben.  No one thought Ben would ski again. I can’t describe how thankful I am for this time we had together.  A huge part of his success on the ski hill was because of Kris Buttenberg and his wonderful business Biste Technologies.  Kris not only kept Ben’s legs strong and technique solid on the Biste but also kept Ben’s spirit alive by becoming one of Ben’s best friends! 

Videos: Mount Biste        Ben Skiing Bonanza

·      The Discovery! Ben spent at morning at The Discovery with Executive Director Mat Sinclair helping prepare a new exhibit called Super Service Center. 
·      Costa Rica!  The Warren family guided us to "La Pura Vida!" -- warm water, waterfalls, cloud forests, amazing zip lines, and kind people.  Our boys loved the warm ocean water, paragliding, jumping into swimming holes, adventuring through the cloud forests and listening to the amazing sounds of Costa Rica.  Technically, Ben survived flights and layovers and long car rides.  He made new friends and shared his courage with them.  For me, I comforted him by patiently answering his three big questions, “Dad, how much further? Dad, where are we? Dad, when will we be there?” 
·     Los Angeles! We made two trips to LA to be with his Auntie Lala and Uncle Jimbo and his cousins Lola and Anderson. Their backyard pool is superb to break up the day.  On our first trip, our Eurovan broke down just north of Mammoth, CA on a Thursday night. We slept in the van on the side of the road and started making phone calls first thing the next morning.  A friend told me to call Miller's Sierra German Auto in Bishop.  Tim, the owner, answered the phone and kindly walked me through what probably happened. Next thing you know, Ben, Spike and I are in the tow truck headed to his shop in Bishop.  As soon as Tim met us at his front desk, I noticed his eyes tearing up. He knew right away something devastating was happening to Ben.  God has some Tim’s out there—they know, they feel, they love, they act.  Turns out the VW part would not be in for a couple of days so Tim helped us rent a U-Haul and we made it to LA by 5pm Friday!  That evening, Tim sent me a text to tell me that he is annually involved with an auto race that every year chooses a charity to support and that coincidentally this year’s race the following weekend was going to benefit The Braille Institute and they wanted to do it in honor of Ben.  Tim sent me a picture of the check to the Institute for $250.00 with Ben’s name on it and also refused to let me pay for the van repair.  Thanks again Tim!
·      Running Races! Ben woke up on Mother’s Day wanting to do the annual Mom’s on the Run race.  I asked him which distance he wanted to do and he said, “all the kids do the 5k, I want to do the 10k”.   We finished in 1:36. This led to some running interest so we did some more training and two weeks later he did the Battle Born Memorial Day race and logged 13.42 miles in three hours.  Not bad for a blind kid who is adrenal insufficient and who is losing coordination in his legs. Spike was by his side the entire time.  I’m hoping to get him excited about biking on a tandem with me next…stay tuned.
Thanks and Recognition: 
1. Kawasaki Dealership Reno:  Thank you James and Shawn for keeping Ben’s Side By Side rolling in style.  We’ve logged 60 hours on it already.  Ben loves you guys and we are so appreciative of your ongoing support and positive energy.
2.  Sol Cannabis: Sol is helping Ben in countless ways. Please be encouraged to learn about the benefits of CBD Oil as it relates to inflammation, the nervous system, anxiety and so much more.  We are certain that one of the key factors keeping Ben healthy is his steady regimen of high quality CBD Oil. 
3. EZ Air Trampoline Park:  Thank you Scott and Kristen Martyka!  Your staff is incredible!  Jump sessions got us thru the winter and provided engagement for Ben both physically and socially.   Please be encouraged also to research the neurological benefits of jumping!

Videos:  Jumping at EZ Air       Climbing the Silks 

4.  Newborn Screening: On May 25, Governor Steve Sisolak signed SB291—the Nevada Newborn Screening Bill.  In addition to X-Linked ALD, two other disorders will be added to the screening beginning in 2020.  Our brilliant state senator, Julia Ratti, launched her effort to change the law through our family’s story but her work resulted in a best outcome for all Nevada families.  The new law reflects a shift in policy and requires Nevada to add additional screenings within four years of being added to the Federal Recommended Uniform Screening Panel. Thank you, Julia, for your dedication to this legislation! 
5.  The Walker Family: Thank you Jason, Kerri, Louden and Lander for making the trek all the way from Eastern Washington to be with us for a week.  Ben had a best week ever!  We love your family!
6.  The Bad Man Club: Last but not least!  Thanks to all the Bad Men out there.  You know who you are!  Ben loves you and needs you! 

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Comments (24)

  • Jamie Engesser
    Jamie Engesser

    Love you guys and Ben!

    4 years ago · Reply
  • Hannah Lerman
    Hannah Lerman

    Thanks for the update. Ben’s been busy! 😙

    4 years ago · Reply
  • Jonna AuCoin
    Jonna AuCoin

    Wow! Inspired and humbled. Thank you for sharing and for the heartfelt reality. Love and prayers to you and yours.

    4 years ago · Reply
  • Mary Japel
    Mary Japel

    Thank you for sharing, You are amazing. Love and prayers, Mary Japel

    4 years ago · Reply
  • Sue Gonyou
    Sue Gonyou

    What a wonderful post! Prayers continuing! Richard tour has been one of my morning reads for many years; I reveal in his insights and guidance. Stay strong - the lord has blessed you so!💕🙏🏼

    4 years ago · Reply
  • Joyce Pfeifle
    Joyce Pfeifle

    Your family has been an inspiration to me since the first day that I met your mother with her commitment to family , love , laughter, friendships, adventure, prayer and God. Thank you so much for sharing your life and Ben with us.

    4 years ago · Reply
  • Martine

    I love every impeccable word, thought, emotion and experience shared. I feel diffferent, better, inspired, and challenged by your entire family, including the extended. Thank you Ben for your tenacity and defining what that means to us all. Tim, Brad, Felicia and I love you and continue to pray God gives you EVERYTHING in His will that you need.....Ben, Luke, Katie and Matt Thank You❤️

    4 years ago · Reply
  • Donna Antraccoli
    Donna Antraccoli

    I love you all and keep you close to my heart and head. Donna Marie

    4 years ago · Reply
  • Jane Lauer
    Jane Lauer

    Matthew, Katie, Luke, and Ben, You are in my thoughts and prayers daily. You are amazing and inspirational. Thank you for the update Matt. I love you so much. Our time together in Denver was the best. Spending time with Ben is a gift 💝 I will never forget. My love to you all! Auntie Jane 😘

    4 years ago · Reply
  • Annie Munn
    Annie Munn

    Thank you Matt for allowing all of us to understand what you all are doing to support each other on your journey.... We continue with you all in prayer and believe that The Lord walks, runs, skis, swims... each step with you all. We love you dearly🙏🙏

    4 years ago · Reply
  • Cathy Nobles
    Cathy Nobles

    Everything you shared Matt paints vividly what your quote is all about and I am so impacted by the raw courage that Ben, Luke, and Katie and you live each day. May God continue to grant you the strength and wisdom to walk this path. You all are heroes to me.

    4 years ago · Reply
  • Stephanie Blume
    Stephanie Blume

    Thank you for the beautiful words Matt. We love you guys.♥️

    4 years ago · Reply
  • Lane Swall
    Lane Swall

    Your family and spirit are incredible - sending love and kind thanks for sharing.

    4 years ago · Reply
  • Kelly

    Wonderful post focusing on the blessings of Ben! I love your faithfulness. Continuous prayers for your family. 💞

    4 years ago · Reply
  • Deanna Gescheider
    Deanna Gescheider

    Matt - I feel your strength. I hear your pain. Ben is able to take this on with such grace bc of you, Katie, Luke and so many more.... thank you for sharing your experiences. ♥️ Scott & Deanna

    4 years ago · Reply
  • Julie ross
    Julie ross

    Your journey of dignity and honor is a tribute to Ben. Thank you dear family for letting us in on your sacred journey.

    4 years ago · Reply
  • Sheryl Verdugo
    Sheryl Verdugo

    You guys are amazing, and Ben has an incredible spirit. Just wow... somebody should make a movie about this kid and about your strength & dedication. All of you are incredible.

    4 years ago · Reply
  • Tomoko keilholtz
    Tomoko keilholtz

    I never stop thinking of you and have the best pics of Noah and Ben in at my desk.

    4 years ago · Reply
  • Autumn Schneider
    Autumn Schneider

    What great adventures Ben has been able to have with the loving support of his family, friends, community. So amazed by his strength and courage and the strength and courage of Matt, Katie and Luke.

    4 years ago · Reply
  • Jon and Polly
    Jon and Polly

    You amaze me, Matt and Katie. This unthinkable tragedy has come into Ben’s life and I can only try to imagine all that you are doing and processing and the pain you are grappling with. I’m so.very. sorry. We do pray for you. It’s so good to read about the practical ways God is using many people to help and support You. With much love to you and both of your precious boys, Ben and Luke. Polly

    4 years ago · Reply
  • Lisa craner
    Lisa craner

    So incredibly inspiring, as always....thank you for sharing your journey with us.❤️

    4 years ago · Reply
  • Susan Wilkinson
    Susan Wilkinson

    Ben reaches my heart with his strength and fortitude. You as his dad are going through so much trying to stay strong for him. Your faith and love shines through. I don't know Ben personally but he is an amazing young man. Prayers and love to you all. Susan

    4 years ago · Reply
  • Greg Latimer
    Greg Latimer

    Thank you for this update. I pray for Ben every single day. I want God‘s best for him and for you, his family. As you well know, nothing is beyond the power of God. I’m so thankful that he is sustained Ben far beyond the doctors expectations. The Lord is the one who numbers our days, no one else. I’m praying God allows him many, many more.

    4 years ago · Reply
  • Kris Buttenberg
    Kris Buttenberg

    HI Matt, thank-you for sharing these inspirational words of understanding, I'm about to print them so I can review them as you do; they came to me at the perfect time. You, Ben, Katie, Luke and Spike all give us something wonderful in return too, something that's positive, powerful and filled with love despite the uncertainty, pain and despair surrounding it. Thank you for sharing our story and videos of my small Reno business and especially for trusting me to help you all reach your skiing goals with Ben. I love you all so much. Kris with Biste

    4 years ago · Reply