She said it three times. I smiled back three times. My brain probably misinterpreted it three times. “It’s good that you brought Piper out,” she said. What I heard was, “It is good that you did not keep your daughter with disabilities at home, she should have a normal life, and you should do it more.”
Tears sneaking down my cheeks, I left half way through my son’s first home high school game. To be fair, it was not just because of what I “thought” she said, but also that Piper was being herself. It is hard to get Piper to sit through events, so I arrived prepared with multiple snacks to bribe her to sit. I wanted her to walk into the bleachers, because she is finally able. In my mind, I wanted her to sit like all the other people, so her brother would not feel like people were looking. This is another one of my probable misinterpretations. I try really hard not to give kids a reason to taunt him. We had some boys tease him when he was younger about how his sister wore diapers, could not talk, etc… He is always very kind and happy when we bring her to his events. I just want to protect him because he has already had to live such a different life from his friends.
Piper walked into the area of the bleachers with no backs. We had to go get her wheel chair stroller. She does not yet have the strength to sit on a bleacher for a period of time. Thankfully, there was a handicapped space in the front row between two tiny bleacher seats.
I got her situated, said hi to the baseball parents that I do not really know because I am the one to stay home with Piper. My husband goes to all of the games, practices, meetings… So, I was feeling pretty proud that I got her there to support our son. The game started and Piper devoured gummy snacks, granola snacks, bag of M&Ms, an orange, and a cereal bar. During her buffet, I continuously refilled her small squirt bottle with thickened water to keep her hydrated. I wiped her mouth, shaded her so she would not burn, pulled her shirt down to keep her tummy covered, and precariously sat on the edge of my bleacher seat to do all of these.
Three times Piper wanted to get up. I helped her out of her chair and hoped to walk around behind the bleachers. Each time, we got to the stairs, and she made her body stiff as a board. She made loud pained noises to let me know she was not going to walk farther. Then she would grab me around the neck with a vise grip. I had to gingerly (look like I was cool) and try to pivot her back to her chair. So, when she pushed her iPad away, did not want any more snacks, and tried to get our of the chair, I knew I was OUT. Had to leave, to keep from causing a scene. Leave in my car….trying not to cry….because my husband would say I was too sensitive.
This woman’s words pierced my heart because I feel guilty that I do not venture out more. Piper is a home body and does not like loud noises, lights, or chaos. Perhaps people do not understand the strain and stress that goes into taking a child with disabilities out to events. I can’t just watch the game, grab a snack, and cheer for my kid. My mind and body are bound to caring for my sweet child that can’t run get her own snack and also worried that she will wet her pants. I should be thankful she made it over an hour and did not have an accident. Truly, I am very proud of her. On the inside, I hurt. My brain knows that I am a not the normal mom, I am different. Not one of the gang. Unable to participate in team parent bonding or parties. May never make it to the end of a game because “3 Strikes – I am out.”
I may be out today, but I pledge to continue pushing Piper to socialize. Pray for me and my perceptions of what others think so that I don’t put myself OUT too soon.