Our entire family wants to thank everyone for going “All Out for Ben!” last night. It was a beautiful evening and we felt every ounce of everyone’s love. For those of you who didn’t make it, we want to express the same sentiments we shared last night so I’m including them as our latest journal entry. We are as grateful for you and want you to hear the words we shared. Thanks to everyone for everything you are doing for our family.
Thank you everyone for coming tonight. We are humbled and grateful.
I am so proud to be Ben’s dad. I can’t believe how brave he is and how much love, care and support is here for him and for our family. I am so proud to be Luke’s dad. Every day I observe him facing this tragedy with love, confidence and resilience.
What started as some vision issues last fall—with our thriving 8-year-old boy and NO health history— ended up within one day on March 9thof this year becoming a most horrible, terrible, worse case circumstance that has put our family into an unimaginable place. The last 6 months have been so difficult. We are surviving, and this is in large part because of you. Based on what we have experienced and received from you all’, we can’t imagine how much more difficult this all could and would be. You have made it possible for us to focus on Ben, to support Katie and see to it that Luke’s needs are met. As dad who considers and wrestles with all of this responsibility, I again want to say “Thank you.”
In March, doctors conveyed their sincere sorrow and wished there was something they could “do.” Each of you, and many more that are not here said something different. You said “What can we do? We want to do.” JP told me that people were calling and wanting to do something… I really didn’t know what we needed. I knew we needed to focus on Ben and Luke and to somehow keep some composure. Thank-you Erica and Lora for creating the post hope website to help communicate, to the Nor Nev posse for handling our yard care, to Linde for leading the charge on our Meal Train, to the chefs and to all of the grocery shoppers out there offering to pick up whatever we’ve needed in the moment. This has, and is continuing to allow us to put all of our energy and time into our family and “go all out for Ben.”
We’ve observed how difficult and terrifying it is to be 8 years old and go blind within 5 months, and to lose so much. It is scary, frustrating and unfathomable. Ben was just coming into his own- socially, academically and athletically- and now this disease is taking him down. Everything went dark for Ben: “What is that noise?”, “Where are you?”, “Dang it, I keep bumping my head and tripping on things.”, “I can’t run, throw, kick, catch, shoot, ski, ride, chase………”, “Dad where are you? Dad, don’t leave me.” “Dad, what can I do, I’m bored.”
Ben is courageous and heroic—doing his very best to hold his life together, to adjust and to adapt. He does things blind that most people with sight won’t even try; snow ski, hover board, float the Truckee, surf, wake surf, drive a boat, ride a horse, ride quads and shoot guns, hike to an alpine lake and rope-swing into the water.
Ben is a fighter—going hard and finding outlets for his energy, while he still has it; climbing poles, landing flips on the tramp, running on open grassy fields at Reno High, wrestling, indoor skiing and running a scooter business on the side. Unfortunately, with this most terrible disease, just as he is starting to acclimate to his blindness, the de-myelination of his brain has started to affect his speech and mental state. Next, he will lose his muscle tone, and eventually all of his systems will be compromised. We don’t know what will happen next or how long Ben will walk this path… there are lots of unknowns other than the terminal nature of his diagnosis.
In the midst of this, you are supporting us. You have been the answer to our prayer that Ben and our family would have a good summer together and we have. In spite of Ben’s daily struggles of which there are many, we’ve been on vacation, shared meals with friends, swam in lakes, and enjoyed the amusement park we’ve created at home. Parents have coordinated play dates nearly every day for the last 6 weeks and our home has been filled with the beautiful and incredible sound of boys having fun. We are grateful for every encouraging card, letter and text and humbled by everyone’s unmatched generosity that has been expressed in so many ways. This helps us go “All out for Ben”!! Thank you.
Our belief is that YOU are the manifestation of God’s love for Ben, for us and for our entire family. You are, as Ben would say, “a slice of our heaven” as you uphold us practically, prayerfully and through our beautiful friendships.
Our faith informs us that Joy is available to us regardless of life’s circumstances. As unimaginable as this sounds, we feel it and truly believe it. Romans Chapter 8:28-30 makes these audacious claims:
1. Our bad things turn out for good: It does not say that bad things won’t happen, that they should be reasoned away or the consequential suffering be minimized—in no way can what is happening to our beautiful Ben be reasoned away or minimized. This is a terrible circumstance and we are suffering but somehow good is and will continue to emerge from it… just like tonight.
2. Our good things are never lost: We have created incredible memories with Ben and have so much joy in being Ben’s parents and brother. We can definitively say that we are a family who has spent generous amounts of time together, with our extended family and wonderful friends. We have consciously reveled in just how special our lives are. We are making more memories and all of them will be with us forever.
The memory of tonight will be with us forever too. Being surrounded by this astonishing love and support in the midst of our anguish is wonderful. We will carry this in our hearts always.
3. And, the best is yet to come: Maybe because of our new vantage point we deeply sense the reality that we will see and be with Ben again someday- a Ben who will see and run and kick and play and climb and ski, who won’t be in pain or frustrated or compromised in any way. A Ben who will be free of the confines of his body and of this earth. We are thankful for this confidence.
I’m going to add my own sentiments…
I will just confess that when the idea of a community gathering like this was pitched to me several months ago, I felt horrified by the idea of standing up here in front of everyone. I felt and still feel afraid in so many ways. As a fifth-generation Reno girl, the knowledge of spending the rest of my life running into people who would know our story seemed and sometimes still seems like too much to bear. The sadness inside of us is so deep.
However, as your love for us- for Luke and Ben, for Matt and me, for our parents and our siblings, their spouses and our nieces- has manifested in so many ways, I wanted and needed to be here to honor every single one of you. Thank you for the way that each of you are holding us up as we walk this path.
So important is to thank Matt’s employer, his bosses and his colleagues who are going above and beyond to assure that Matt can both get his work done and be at home with us. The day to day burden Matt is carrying is the heaviest. We understand the sacrifice you are making to make this possible and are grateful.
I mentioned I was a fifth-generation Reno girl and from that part of me, so many of my parents’ wonderful friends who I’ve known or known about since I was a kid are here standing with us. Also in this community are friends I went to Merry Berry with, friends I went to Hunter Lake with and my best girl friends who united at Swope way back in 1983… I made more friends at Swope and Reno High that are here today, and through the ups and downs of life, the directions different relationships and interests take us you are here for my family today. Go Reno!
Sorry Dad, but I never really was content just being a Reno girl… Even though I stayed at UNR for school I was easily drawn to things that weren’t really “Old Reno.” More circles of friends developed through my employment at Deux Gros Nez, the Cheese Board and the Hermitage Art Gallery, and through my spiritual journey deeply rooted in relationships at the River Christian Church. I would not be who I am without those two profound influences. Some of you are here tonight representing those groups and I love both these places for teaching me the utter importance and high calling of loving and accepting everyone, just the way they are.
When I was done travelling and decided it was time to get a real job at age 30, I began teaching social studies. A few of you teacher friends have become my dearest friends and your families have joined in the fun too. I fondly refer to the friends I’ve made in this realm my life “frolleagues” which combines the words friend and colleague. It’s one of my favorite words and you are the best! I’m so proud of what you do in your classrooms with kids everyday! Thank you for being here tonight volunteering for this event. I love you all and miss seeing you and spending time with and thinking with you more than you know.
In 2003 I met Matt and Matt’s friends became my friends! More new friends… We refer to ourselves as the Nor Nevers and solidified strong bonds of friendship through long days on our bikes and skis all over the Sierras and annual camping trips. We did it before kids and we continue to do so with our kids. I love you all dearly… thanks for your adventurous spirits and for being in our lives.
Matt’s business network in this community are tremendous too. As boring as business networking events might seem, we do an aboveboard job of having fun… Matt calls them date nights which I still think is a stretch… Anyways, Matt has made connections with terrific people who are engaging and fun and who I look forward to seeing when I have the chance! Thanks to everyone from this sphere who showed up!
Finally, Matt and I send our boys to a beautiful school called Mountain View Montessori —and this is where our newest friendships have been forged. Mountain View is a community unto itself. Upon hearing the news about Ben, the staff and families dove in to help us. The staff worked diligently with us to navigate this profound shift in the life of our family. They continued with Ben’s education through the end of school year. They embraced the idea Luke and a buddy had of creating a box in the hallway where children could draw pictures or write notes for Ben. Parents made meals, brought treats, dropped gift cards at school, took Luke and me to Chicago, and like Matt mentioned have hugely contributed to the success of Ben’s summer through play dates and simply treating Ben like a typical boy. These friends hosted three fundraisers for us through their own businesses. Thanks to all the MVM families out there for being in our lives. Now more than ever we know that we know that MVM is the best school for our boys.
The boys’ Sports teams are also part of this story. I know it’s been said but the Bracelets for Ben movement is incredible and the time you have invested into making a difference for Ben is touching. And Reno Elite- to Sara and everyone else from that organization who has worked on behalf of our family. Thank you.
There are other friends we’ve made along the way- Reno Devo, the Reno Cycle cross contingent, gym friends, neighbors, Youth First… Thanks for being here and for loving us.
I’ll close by saying that each of you are great! So, this means that we are all absolutely standing in the presence of greatness. Lots of different people here representing very different expressions of our common humanity. Isn’t it amazing to see what the power of love can do? Like Matt said, we are humbled by your love, we are grateful for your support and we are blessed by your friendships.