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.
Ben Shredding Kit Carson