Venturing out into the world as a family of 3

An outing to 'Hamilton' in honor of a columnist's late daughter is bittersweet

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by Jackie Babiarz |

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Last fall, I purchased four tickets to see the hit musical “Hamilton” in Chicago in last December. My husband, Bill, and our youngest daughter, Ryan, had already seen the show in New York, but were happy to see it again with our oldest daughter, Cammy, and me. We knew there was a chance Cammy might be too unwell to go, but we never imagined we would lose her to complications of Rett syndrome beforehand.

After grieving for a month and trying to figure out our new life as a family of three, we decided to honor Cammy by seeing “Hamilton” in January. It was very strange that we didn’t have to go through our usual routine of preparations with a loved one who has special needs.

I think most people don’t understand how much of an ordeal purchasing accessible seating is for events. In most cases, I can’t just buy tickets online, as I would with general admission. Instead, I have to call, speak with someone, and explain that we have a wheelchair user who can’t sit alone. I’m allowed a companion seat, which is often just a folding chair, but others in the group must sit somewhere else if the venue can’t accommodate additional folding chairs, as they’re a fire hazard.

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A couple and their daughter take a selfie outside of a theater in Chicago, where "Hamilton" is being performed. They're standing on a crowded sidewalk and the marquee is lit up in the background.

Jackie, Bill, and Ryan Babiarz see a performance of “Hamilton” in Chicago in January. (Photo by Jackie Babiarz)

I’ve also found that people usually crowd into the elevators instead of walking up a flight or two of stairs.

Bathrooms aren’t equipped for changing someone who is older than an infant. When you have to lay a person on the floor of a public bathroom to change them, it strips them of their dignity.

Feeds are planned around an outing. We always had to make sure Cammy was fed before a show so that the feeding pump wouldn’t end and then beep during the performance.

My anxiety was always through the roof.

The only thing that made these outings a little easier was having accessible parking.

Today, my anxiety is still high, but for different reasons. I never know when I’ll just start crying. Something that seems trivial to others can leave me in tears. Trying not to think about having a panic attack sends my anxiety into overdrive.

As a family of three now, we drove through downtown Chicago in Bill’s new sporty sedan, not an accessible van. We walked from a regular parking spot farther away from the venue. We sat at a high-top table in the restaurant, ate at the same time, and didn’t have an iPad playing “Sesame Street.” We walked up a couple flights of stairs to the theater, used the regular bathrooms, and watched the show from regular seats.

It was such a bittersweet evening. Carrying on and finding yet another new normal prompts such mixed emotions. I was proud that we did it. One foot in front of the other, one day at a time.

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.


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