The Bucket List Part II

This evening we spent awhile going through the stack of postcards we’ve received this last week. They’ve come from around the globe, and each has such sweet messages of support and encouragement and inspiration. (Many say they heard about us through so we’ll be checking out that site for sure!)

One card really stuck with me – it’s from Sheri in Idaho and it said:

“Good luck with your 1st bucket list and make a 2nd bucket list with the same sense of urgency to work on your entire life.”

Sheri’s suggestion has me pondering. Ben’s wish list does feel time sensitive because they are vision related, and we know we’re losing more sight as he grows. There’s a finite time for when we can make these things happen, and I know that’s part of why he’s been flooded with this world wide support to make them happen now – it’s humbling and fantastic!

Over time his vision is going to deteriorate more, but that doesn’t mean any of his wishes will become irrelevant. They’ll change, we’ll modify, Ben will adapt as he always does… but visiting a beach or walking the streets of London will still be amazing when Ben can’t see, they’ll just be a different sensory experience.

That simple line on a postcard got me thinking about Ben’s life long bucket list – the things he may want to experience that magnify his other senses, that enrich his life through sound and touch and taste and emotion. Aren’t those senses just as spectacular?

Our desire to fulfill these experiences isn’t because we think that losing his vision is the end of the world or that all experiences become meaningless without sight – not at all! We just know that some opportunities will be easier for him to fully embrace with his sight. When the day comes that we can’t make that happen, then we are going to throw ourselves full force into all the other ways we can help Ben experience the world.

So that’s the next big question I’ll be pondering – if you couldn’t see, what would you want to do? :) To taste, to touch, to smell, to hear, to climb, to ride, to submerse yourself in?

I want to hear your suggestions! Give us amazing things that Ben can enjoy now AND in the years to come?? What’s the best thing you’ve ever smelled, most amazing thing you’ve ever heard, favorite thing to touch, most delicious thing to taste?

Some of my ideas?

– FOOD! Make him super comfortable in the kitchen. Both cooking and tasting and smelling and touching and yum! We love food around here.

– Learning to make ice cream by touch and taste!

– Kneading and baking bread. (Ben just made his first loaf of ciabatta bread, with some oven help. It was great!)

– Riding a bike. Ben did this at his Camp Abilities! We also found an inexpensive tandem bike on Amazon so now he takes bike rides to the park with his dad.

– Surfing! Or at least finding a way to ride the waves.

– Riding a horse. Ben now rides at Spirit Horse Therapy.

– Touching animals of all varieties: sea life, snakes, frogs, birds, cats, dogs.

– Learning to play an instrument: we’re looking for a piano teacher comfortable helping him learn by ear, and encouraging him to consider the violin, guitar, and dreams. ALL instruments would be good for him! (If you are local and know teacher resources for a situation like this please let us know?)

– Music appreciation: listening to a variety of composers from over the years.

– Art: sculpting, pottery, finger painting, charcoals, anything with texture.

– Laying on the beach listening to the waves. I love that sound.

– Yoga or other types of exercise to stretch and listen to his body.

– Dance!! With a partner (ballroom?) or on his own. Though I’m not sure how to best make this happen.

– Getting comfortable walking/running with a sighted guide.

– Gardening: tending for plants, digging in the dirt, feeling the texture and changes as they grow.

What would you suggest?

(And Sheri, thank you for that comment – you were inspired.)

This entry was posted in Faith, Kids, Trips. Bookmark the permalink.

16 Responses to The Bucket List Part II

  1. Theolinda Foster says:

    Please let me know Ben’s mailing address so we can send him cards and post cards. Thank you.
    P.S. Please give Ben a Grandma hug from me and tell him he is in my prayers.

  2. Heidi says:

    Here’s his mailing address and thank you in advance!

    Ben’s Wish List
    c/o Hobby-Q
    PO Box 2107
    Lake Dallas, TX 75065-2107

    Ashley, we would LOVE any and all ideas. We worked with a wonderful vision teacher through our local ISD until Ben hit school age, at which point we were told they will no longer provide any services to him because we’re homeschoolers. It’s left us scrambling to find resources and support and we’re grateful for ANY tips. My email is

    Julie, I think that’s a great idea. While we don’t have guns in our home, I’m a soldier’s daughter and we live in Texas – guns are everywhere. My children will learn about safety and respect around firearms! :) I hadn’t thought about a martial art but we’re talking now about options he could explore that would be lower impact (since he’s higher risk for retinal detachment.) Thank you for the ideas, everyone!

  3. Ashley Marshall says:

    I work in special education for the Dallas ISD. We have a great vision program and any of our teachers would love to talk to you about what happens next etc. please call-we are happy to assist even if he is not in DISD.

  4. Julie says:

    You and your family are very inspiring! Thank you for letting us be a part of Ben’s journey. What do you think about target practice with a gun, body (martial arts), bow and arrow, or slingshot? Of course this would be practiced in a safe/secure environment with a experienced teacher. I think it could be empowering to learn how to protect yourself by using other senses other than sight. I know some people will hate or get offended by my thoughts….but these are my two cents. :) Here’s to MANY more bucket lists!

  5. Penny Webb says:

    How about some meditation, when he just needs some time for calm, reflection or just for the world to stop.
    He is such an amazing young man
    If London is on your bucket list, you got a place to stay at ours.
    Big hugs from the UK.

  6. Phyllis says:

    Getting a Theraputic Massage! The sense of touch does wonders for the mind! 😉

  7. Jessica says:

    I believe you are already aware of this group, but will work with him on horseback riding.

  8. Kathi says:

    I sent you a personal email but thought I’d post here as well. When you come to Park City the National Ability Center has an archery program, rock climbing and horseback riding (indoor arena). The horseback riding needs a physicians approval so if you are interested in that please bring a letter from Ben’s physician.

    I think you will be amazed at what the NAC has to offer.

    See you soon!

    Kathi H.

  9. Jessica says:

    If there’s a large space he goes regularly, like… say… the backyard, put sensory things up like wind chimes, plants that have a nice smell (but not so fragrant as to overwhelm the yard), a running water feature, textured pavers or soft ground covers for his feet, etc… in different places so he can run around and always know where he is (and maybe find his way back to the door if he gets disoriented). Designing, building, and installing these things now could also help him learn skills, and integrate the landscape into his vision so he knows what sensory item is where.

  10. Chris says:

    I’m a visually handicapped guitar teacher, and also play the piano and recorders.
    I think it would be a wonderful idea to allow Ben to learn an instrument.
    My personal suggestion would be a string instrument. You get them in a size fitting your hands, plus esp. guitars are very reasonably-priced. Guitars are very cool because you can play classical music as well as the electric guitar (if you want to be a rocker :) ) , you can sing along (with friends and family, if you feel like it) when strumming chords or simply play a melody, which allows for a sense of achievement very quickly.
    The advantage of a violin-instrument might be that you need a fine sense of hearing rather than your eyes to get the right note.
    I myself find the piano very hard to play by ear.

    Further suggestions for cheaper trips:
    In England, most museums are free for everybody.
    In Turkey especially, but also in France visually impaired people get free entrance to national sights and museums for themselves and an accompanying person.

    PS: You could walk up the clocktower of Big Ben to see the bell.
    And at Old Bailey in London you can watch public court hearings where the judges wear wigs like in Alice in Wonderland.

  11. Hello,

    I wanted to throw a couple ideas yalls way. My wife and I are from Texas. I am from Grapevine and She is from Seguin. She is military and we are in Fairbanks, Alaska now. I work at “Explore Fairbanks” and saw the story on yall coming to see the Aurora. I am a professional photographer and with being here photographing over the past 1.5 years I have photographed the Aurora so many times and am in aw every time. I am compiling a compilation of Aurora time-lapse that I have shot while here. I will email that link soon.

    Anywho sorry saw a squirrel, if you guys have not been yet you should go to the Dallas Aquarium. It is Awesome I have been there numerous times and it is a great “in the environment” animal habitat.

    On the wish list 2, I would suggest zip lining and if your going to do that I would say Costa Rica they have great zip lines where Ben could experience the wind blowing through his hair and the sense of flying. And with the jungle all around he can hear some amazing birds and frogs. Plus the ocean is right there too. It is an awesome sensory experience.

    Best wishes

  12. Geoff Lamb says:

    Just a few ideas that could possibly be knocked off all at once. There’s Niagara Falls which from the Canadian side which you can go under and be behind to hear the thunder and feel the mist and even the earth vibrate. There is a Great Wolf Lodge in Niagara Falls Ontario and possibly ice skating at an arena if done in winter. The least expensive option is to fly into Buffalo NY and rent a car. Here are a couple of links:
    Good luck and best wishes,

  13. Diane says:

    I am a photographer that enjoys seeing with my ears, especially when at the beach or near a waterfall. I know you can listen to the roar of the waves or a waterfall while you have sight, but have you really listened to it without seeing it? I believe it to be one of the most wondrous natural sounds of the earth that lets us know the power of being alive.

  14. Lauren says:

    I know I am in the wrong section for this but the Smithsonian museums are amazing, in Washington D.C.!! They are all free to go to, and he seems like the kind of kid that would love to see the Natural History Museum or the Air and Space Museum, the zoo, and all the monuments.

    You mentioned cooking, you should watch Masterchef season 3, Christine Ha won the season and she is blind. It is amazing and inspirational to watch her cook. Food festivals would be fun to go to, all the smells and food to taste test.

    Whitewater rafting would be a lot of fun, with sight or no sight, so would tubing (on a lake behind a boat).

    Also, I know a lot of animal shelters (humane societies and other non-profits) are always looking for people to play with or walk the dogs they have, or play with the cats. The shelter in my hometown is always looking for kids to play with any puppies they have. Not only would he be getting experience with a dog if he ends up getting a seeing-eye dog or if he has never been around them before, it is also great for the animals to get love.

    I look forward to hearing more about your trips!! Best wishes and have fun on your adventures!!!

  15. Drew says:

    Learning to read Braille could be a fun task. I know reading always helps me when I’m suffering from a Crohns flare up. has tons of free Braille files to download tian electronic Braille reader. As I was also a sick youngster, I have a lot of fellow feeling for Ben. When I am especially down, I like to read Isa 33;24, where it says soon we will no longer be sick. It is very sad Ben is having his childhood robbed from him, but it makes me so happy to know he has a good family that loves and cares about him. Take it from me, you make all the difference in a sick persons life.

  16. Kim says:

    Scrapbooking might be a good thing before he loses his sight. When I started, I noticed that the hours it took me to put a page together, I was starring at the photos I was going to use and all the details of the event slowly came back to me. Sculpting would be a really good hobby, and if he starts it before he loses his sight he can continue after. Teach him cooking, and how to feel his way around the kitchen. Find things to do to make him feel useful. Read to him and buy audio books for him so he can fill his life with stories. Since you have a large family and they do everything together, you could assign each child an activity for them to do with their brother each day, that way there is still ongoing interaction, and everyone is helping him grow accustom to his new life. Wishing you all the best of luck!

Leave a Reply

Your email address will not be published. Required fields are marked *