People with disabled kids, what’s the most “unconventional” way you’ve learned
The Price of a Window Seat
Me and my 5-year-old daughter were on the bus when it crashed into a pole and paralyzed my daughter from the neck down, and it should have been me. But for some reason, I let her have the window seat.
I was a medical intern with 8 years of medical school, so giving up everything I had worked for wasn’t easy. Luckily, my husband had a pretty good job in a law firm, so I was able to quit and be a full-time caretaker for Alyssa.
I always wished my husband would help out or at least throw out a thank you every now and then, but I pushed the thought away because he never let us struggle financially. My husband forced me to quit medicine to care for our paralyzed daughter, then bragged to his bosses that he was doing it all alone.
When I finally opened up about feeling invisible, he smirked and said, “As soon as Alyssa lost her ability to function, so did you.” I just stared at him. That was 3 years ago.
Fast forward 4 years later, when my husband told me he was hosting a work function at our house, it was to impress his higher-ups to increase his chances for a promotion. He said I was only allowed to come if I pretended that he was the only one who took care of Alyssa.
This seemed a little strange at first, but still I accepted because a higher income for the house meant Alyssa would have a better life. The weeks leading up to it were draining to say the least.
My husband was examining every little detail as if having the wrong napkin color or flower pot would stop him from moving up in the company. And during all of it, I would hear Trevor on the phone bragging about how well he’s managing a disabled daughter while organizing a function and working a full-time job.
This made me spark up on the inside, but I just kept reminding myself of how amazing it will be to send Alyssa to college with no student loan debt. In the days leading up to the function, my husband had hyped up how much effort it was taking him that they ended up cutting his workload in half.
He used his new time to watch recorded NBA games from the 1980s. Well, I had always told myself that Trevor would step up if not for his workload, but now I was seeing his true colors.
Fast forward to the big day. Trevor had bought me a beautiful blue Ralph Lauren maxi dress that must have cost around $2,000. It didn’t make up for the resentment I felt in my stomach, but I did feel somewhat pretty.
As for Alyssa, I had used my savings to buy her a Dior pink and glittery dress. She smiled when she saw herself in it, and that made me smile, too.
As more people came flooding in, I noticed everyone was referring to me as Trevor’s wife instead of my name. But everything else was going smoothly, so I just ignored it until there was a lull in the conversation because Trevor would use me to fill the silence.
Trevor said: “You know, Sally over here doesn’t even work. She just sits back, watches me take care of Alyssa and spends her entire day reading mom blogs on Pinterest.”
The men were laughing while the women were giving me dirty looks. I felt my face flushed with embarrassment, but just reminded myself that Trevor would say anything to get the promotion for our daughter.
But Trevor kept going.
Trevor said: “She doesn’t even know how to take care of our daughter. As soon as Alyssa lost her ability to function properly, so did my wife.”
Soon, everyone was keeled over laughing while Trevor called me lazy, useless, a bad mother, and hopeless, all in the form of a joke. But then came my breaking point.
Trevor said: “In fact, if she had chosen to sit in a different seat on the bus that day, then Alyssa might still be normal.”
I looked over at Alyssa, expecting her to be sad or even angry. And she was angry, but not at me.
It was at Trevor. Her index finger twitched slightly.
I was confused because this was usually something she only did when something was wrong.
Alyssa said: “My daddy is lying. Mommy does everything for me. She knows all my medicines. Daddy doesn’t know my purple medicine or my yellow medicine. He doesn’t know how to make my breathing better.”
Alyssa said: “Mommy stays with me all day. She reads Good Night Moon 17 times if I want. The room stilled. Mommy loves me no matter what. No one’s allowed to be mean to her.”
Trevor’s mouth was opening and closing like a fish out of water. His higher-ups stared at me with a newfound respect.
Soon, everyone was coming up to me and congratulating me on being an awesome mom. Except things didn’t finish there because Trevor had taken Alyssa standing up for me as a reason to destroy our family.
