Ella Learns to Grow Up in a Complicated World

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by Michael Casten |

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wheelchairs, holiday season, conferences, musical talents, dogs

My daughter with SMA, Ella, has a knack for making friends. She naturally draws people to her and always finds the good in them.

Last week, Ella’s older brother, Henry, and her older sister, Ava, both had friends over at the house. Although Ella was the youngest of the group, she was able to hang out with them and keep up.

The other night, we had some friends over for some well-deserved and long overdue social time. They have a daughter who is younger than Ella. Without missing a beat, Ella was able to play with the girl at her comfort level.

The world is full of understanding and compassionate people. It can also be said that some people lack empathy and compassion. Ella recently had a negative online experience in which a person, for whatever reason, made fun of her because she can’t walk. This upset Ella tremendously, and we had to help her navigate a response. Ella took it upon herself to forgive the person for the cavalier comment. 

For as long as we’ve had a modified van with handicap license plates, we have noticed that people who aren’t supposed to park in handicap spots do so anyway. They claim they’ll be right back, and feel it is OK to take the spots. Of course, when we’re out and about in our van, we have Ella with us, and we have to model how to handle people who lack respect for people with disabilities. 

Ella has a lifetime of challenges ahead of her. She desperately wants to do the types of things that nondisabled people do. She wants to have a good job, a family, and a social life. As she grows older, she is developing skills to effectively participate with people despite her SMA. She is wise beyond her years and can relate to kids older and younger than herself. She understands that some people out there might make her life more difficult because of their lack of understanding. She realizes that she will have to work a bit harder than others to live the life she wants.

Ava and Henry are growing up alongside Ella. They do their best to help her when she needs it. They also look past her disability and treat her like they’d treat any sibling, giving Ella the chance to grow up with “normal” sibling relationships. But Ava and Henry are also learning about the world and the struggles that exist. We feel that as adults, they will be more empathetic and compassionate than many people simply because they grew up with a sibling with a disability.

Our family is dynamic. Each has their own personality, like any other family. We feel, though, that the strength of character our kids are developing will serve them well as they go into the world as adults. We are five servings of strength.


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