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. [...]
Ben & the Anderson Family - Journal
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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. [...]
Welcome to the Ben & the Anderson Family support family! This site is for family and friends, old and new, to organize our efforts to support this extraordinary person. This page will serve as your home base for rallying the troops, receiving updates , and raising dearly needed funds to support Ben & the Anderson Family. Here's the plan:
Your First Step: Please take 30 seconds to click on the "Follow" button on the top right of this page. This will allow you to receive updates, read journal entries, make donations, share Ben & the Anderson Family’s story on social media, and help the family with week-to-week calendaring needs. Though not mandatory to follow Ben & the Anderson Family’s page, we encourage you to easily create an account with your name and email in order to be able to post photos, leave comments and sign up as a helping hand on the Calendar page. Feel free to upload a photo of yourself to your profile so we can get to know and recognize others on Ben & the Anderson Family’s support team. After clicking “Follow” above, read on to learn more about what you can do to help.
Journal: This tab is where you can read the latest entries posted for Ben & the Anderson Family and our support team. You may see additional authors writing updates here to help alleviate pressure for Ben & the Anderson Family and expedite information sharing. Each post is followed by a photo and name of the author of the entry. You can reply with supportive comments to any journal entry, or click on the name of its author to send a private message.
Posts: This is where you can leave an encouraging message for Ben & the Anderson Family and family, and to read thoughts left by others! If you have something pressing you'd like suggest that everyone sees (e.g. a fundraiser or upcoming event you're spearheading), please don't hesitate to contact us via private message so we can consider sharing it more widely in the Journal sections. There will undoubtedly be many coordinated efforts and events ahead, and we want to make certain they’re organized and publicized through this site to help drive the greatest possible impact.
Calendar: Please see this important section to learn what the family needs NOW. This will be an especially helpful section for locals in close proximity to Ben & the Anderson Family. This is an up-to-date calendar which will list the family's immediate needs such as child-care, rides, and meals to help most in the short term. If you see a need posted and can fill it, please sign up through the calendar page directly (i.e. not through private communication) to let us and others know that you've committed to that need. Please check back often to help out with the most recently posted needs!
Donations: The very most impactful way to help Ben & the Anderson Family’s is to make a direct donation right now. After insurance participation, bills and related costs are expected to reach several thousand dollars. This fund will be used at the sole discretion of Ben & the Anderson Family and family to help manage all related expenses, and will give them the flexibility to take time off work as needed to directly support Ben & the Anderson Family’s. Donations can be made securely using credit or debit card for any amount. PostHope.org generously makes these donations free of any fees. All donations, large and small, come with the eternal gratitude. Thank you for your generosity in considering what amount you are personally able to give.
Perhaps more importantly, you will also find the tools to share your donation and Ben & the Anderson Family’s story with friends and family via Facebook and social media. After donating, please click the social media buttons to share far, wide, publicly and OFTEN! We believe that many kind strangers online will feel moved by Ben & the Anderson Family’s journey.
Notifications: After clicking “Follow” above, you’ll then see a tab to manage “Notifications”. If you feel you’re receiving too many or too few email notifications, please check this section to tailor notifications to your areas of interest. For example, if you want to receive journal updates but not new calendar posts, or any combination of notifications from this site, you can do set them to your preference this section.
Don’t Forget! If you haven’t done so already, please click “Follow” on the top right. It’s your very next step to showing your support!