The Day My Nonambulatory Daughter Flew

Jackie Babiarz avatar

by Jackie Babiarz |

Share this article:

Share article via email
sadness | Main graphic for column titled
Share:

Have you ever searched for a gift for nonverbal, nonambulatory child who can’t use their hands? Not much shows up. People with Rett syndrome are difficult to shop for.

When my daughter Cammy was younger, stuffed animals filled her gift bags. Then, it was socks, infinity scarves, and pillows. However, our daughter with Rett is almost a teenager, and these gifts are no longer age-appropriate or needed.

Years ago, I accepted that toys wouldn’t work for Cammy, even if we used a switch to adapt them. I realized experiential gifts would be the way to go.

We started with iFly as a test experience when she was 7. Cammy’s eyes lit up with excitement that Christmas. Before we took her to her indoor skydiving session, I stopped at the location to give the employees all the necessary information. They needed to be aware that Cammy can’t move like other children or speak the commands needed in the chamber. They didn’t have any concerns, and were eager to do this with her.

Recommended Reading
trofinetide | Rett Syndrome News | illustration of line graph labelled clinical trials

‘Encouraging’ Results Seen in Patients in LAVENDER Phase 3 Trial

The day arrived for Cammy to redeem her present. She was smiling from ear to ear as we suited her up and put a helmet on her. Other families who were flying that day gave us the smiles we often receive as a special needs family.

When it was Cammy’s turn to enter the chamber, her flight instructor was very gentle with her. The wind was completely overwhelming, but Cammy kept her hands glued together due to her hand stereotypy. The instructor took a few laps on foot, holding Cammy, to help accustom her to the sensory overload.

As she circled the chamber, I can only imagine her joy seeing people’s reactions. Every single person watching was smiling. Some were clapping, others were cheering, and a few patted me on the shoulder as tears of joy streamed down my face.

The instructor held up his hand in front of Cammy’s face, pointing up. Then, he counted down on his fingers: 3, 2, 1. They were both flying. They darted to the top of the chamber, which is over 20 feet tall. I gasped with amazement. Cammy was having the same experience as the other children in her group, without any adaptations.

indoor skydiving | Rett Syndrome News | Cammy hovers inside an indoor skydiving chamber parallel to the ground as an instructor holds on to her feet. Cammy is wearing a blue, full-body suit and a red helmet.

Cammy tries indoor skydiving at iFly in 2016. (Photo by Jacqueline Babiarz)

When her time was up, we took off Cammy’s helmet. She wore a look of overwhelming happiness. Not only did we have an adrenaline junkie on our hands, but we knew that experiential gifts were the way to go.

Since then, we have recommended that loved ones get Cammy tickets to the movies, a water park, or the theater, or simply invite Cammy over and spend time with her. That’s all she wants — to experience something with you. Presence over presents.

***

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

Leave a comment

Fill in the required fields to post. Your email address will not be published.