I used to love traveling. I won’t lie and say I adored the airport or being on a plane, but those parts were never problematic. Of course, things got tougher after Scarlett was born. We used to fly, just the two of us, to visit my family in Chicago, and we had some dicey moments in planes. She would scream, I would sweat, other passengers would wave their iPhones in her face, and we would end up hiding in the back of the plane by the bathrooms until she calmed down.

But it was never enough to deter me from our trips together. I really enjoyed being able to travel with her, and for the most part, she was well behaved and received compliments at the end of each flight from relieved passengers who had at first eyed her with suspicion.

In the spring of 2012, I was having a lot of trouble with my feet, and I knew ALS was a possibility, but I hadn’t yet been diagnosed. Scarlett had just turned two, and she and I were flying back to San Francisco after a visit with my parents. I was carrying a diaper bag and pushing her in a stroller that transformed into an airplane/car seat. This allowed us to get through the airport with relative ease, Scarlett strapped in and controlled, me balanced on my feet with something to hold onto. Knowing I would need extra time and possibly help, I went straight to the gate agent of our United Airlines flight.

Maybe it sounds crazy that with everything that was going on in my life, I decided taking a trip with my two-year-old was a good idea. But I was determined to keep our lives as normal as possible, and my independence was a major part of that. I knew from my experience flying to Chicago earlier that week that United wasn’t boarding families first. That had come as a surprise, since I thought all airlines did that as a rule.

So I had to tell the gate agent that I was having health problems and would need to board early. In retrospect, I guess she just didn’t believe me, because she basically blew me off, saying that she would see what she could do. When the time came to board, I had to wait until my group—one of the last—was called. Scarlett didn’t handle the waiting very well, and by the time we got to the plane, it was full, and I had to manage a raging toddler and a heavy seat.

I could have done it if the plane hadn’t been packed with people already. Since it was, I asked a flight attendant for help with the seat. She said no. A very kind man behind me offered to carry it instead. I steered Scarlett into our row and sat down heavily, feeling humiliated to have asked for help twice and been denied both times. I have since learned that flight attendants don’t get paid until the door of the airplane closes. And I guess I looked like someone who didn’t really need help.

They should see me now. When I go to the airport, I’m not ever alone. I roll straight to the front of the security line and then sit there, waiting for a “female assist”, as everyone else goes through. That person takes me aside and pats my body down, wipes test strips across my chair, my hands, my shoes. When I am cleared, I go to the gate, where I board first. My wheelchair is tagged and stowed with the luggage, and I am moved onto a narrow airplane wheelchair by at least two agents, who strap me in and push me to my seat. It makes me feel like Hannibal Lecter, and I consider biting someone. Instead, I smile and say thank you. I’m still happy to be going places.

But, as with so many things, it’s hard for me to think about this being “the norm” for Scarlett. I anticipated many trips together as she got older, trips that won’t happen the way I had planned, if they happen at all.  One day, she will travel without me, and, in a gross reversal of roles, she will be the one who realizes how much easier it is to fly without someone who needs extra help.

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