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Ben & the Anderson Family - Journal

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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. [...]