How to Create a Bucket List for a Special Needs Family

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by Jackie Babiarz |

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In the spring of 2013, while visiting cousins, my daughter, Cammy, who was 4 at the time, saw her 10-year-old cousin Carly’s summer bucket list lying on a table. I read it aloud to Cammy.

“Go to the beach. Go to a museum. Sleep over at my cousin’s house.”

With each item I read, Cammy’s smile grew bigger and bigger.

Seeing her excitement, I asked Cammy, who has Rett syndrome, if she wanted to create a summer bucket list, too. Her eyes locked with mine and she giggled, which is a “Yes!” in Rett syndrome communication.

I had some criteria for the bucket list. I wanted to include experiences that Cammy hadn’t yet had, such as holding a sparkler on the Fourth of July. The list also had to include items I could do with Cammy by myself so that we could have adventures on summer days. It needed to include family excursions to force us to get out and do things a typical family would do. Finally, it needed to include at least one selfless act.


Writing a bucket list for someone with special needs requires planning. Cammy needed to be on board for each item. Like any goal, we wanted to make sure they were attainable. In special needs speak, that means, “Is it accessible?”

We knew our bowling alley had ramps to roll the ball down. We knew the local Metra train line had a lift to get on and off the train. Obtaining accessible seats for events is sometimes difficult for a couple reasons. Only a limited number of accessible seats are available in any venue, and ensuring our family of four can sit together without taking accessible seating from someone else who truly needs it is important.

As soon as I posted Cammy’s 2013 summer bucket list on Facebook, we began receiving messages from friends, acquaintances, and even strangers who wanted to help Cammy cross things off her list. We were overwhelmed by the number of people who wanted to see Cammy participate in these everyday activities, which most people take for granted.

A former co-worker sent us tickets to a museum. Cammy’s cousins jumped at the opportunity to take her to a movie theater. Friends booked tickets for Rett families to attend a Laurie Berkner concert along with a meet-and-greet. Another acquaintance worked out all of the details for Cammy to touch the Stanley Cup with Chicago Blackhawks President John McDonough.

Creating yearly bucket lists has helped us show Cammy that she can experience so much more than the confines of her wheelchair.

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Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Rett syndrome.

Comments

Poulton Anita avatar

Poulton Anita

I love the bucket list idea. People can be so creative. Thanks for sharing

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