The title of this column is “Five Servings of Strength,” referring to the five members of our family. There’s me (Michael, the father), Lindsay (the mother), Ava (11), Henry (10), and Ella (8). We realized soon after Ella’s SMA diagnosis that it takes the whole family’s…
Five Servings of Strength
— Michael Casten
Michael is married and a father of three, one being a child with SMA Type II (born in June, 2011). He is an educator who has worked directly with children and their families since 1994. He loves his family, writing, working with his hands, and taking road trips. Michael holds a bachelor’s in psychology (1994) and a master’s in education (2001).
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Ella, 10, the youngest of our three children, is thriving. She has friends from school, in the neighborhood, and online. She sings in a community choir, and occasionally plays with her siblings. Due to Ella’s disease, spinal muscular atrophy type 2, which directly affects her respiratory…
Henry left the house in the evening to go to a friend’s house for a sleepover. As soon as her brother had departed, Ella began complaining that she never gets to do anything fun. Finding independent activities for Ella has proven to be a…
Ella is beginning to look to her future. She realizes that all of the hard work she puts into her physical therapy sessions will help her in the long-run. She accepts that the Spinraza (nusinersen) injections, which she doesn’t like taking, are also…
Ella has had a full week. Her school held parent-teacher meetings over two days. At Ella’s school, the students lead the conferences. She made a slideshow to showcase her work and then practiced her presentation at home outside of our hearing. The kids had Thursday and…
An early morning rain lent itself to the Chicago traffic. The highway was backed up for miles and we had an hour to get to Ella’s Muscular Dystrophy Association Clinic at Lurie Children’s Hospital. Every six months, Ella has to go and…
It was time to take down the Christmas decorations. Every room was filled with boxes and coffee tables were covered with trinkets. We were working in the living room, which houses a large bookcase. We keep family photo albums, books, and special pictures in the bookshelf.
It takes a family to navigate SMA. All five of us play a role in helping the household run smoothly. Mostly, however, the final responsibility lies with the parents. Ava and Henry are 11 and 9, respectively. Ella is 8. When one of them…
Technology is a wonderful thing. It’s something that is a part of all of our lives and can have tremendous benefits. Ella has her own iPad and spends time playing games, looking up videos of things she enjoys learning about, and texting us…
The kids had two weeks off from school for winter break. They spent time with family and each other, and Ella used her manual wheelchair a lot. The festivities started with the annual breakfast for Lindsay’s birthday at Egg Harbor, where…
Reading boosts children’s abilities to convey ideas, thoughts, and stories. Ella’s teachers maintain that kids should read at least 20 minutes per day, even on weekends. Kids often find a book they like in the beginning but then lose interest as they get…
The Christmas season is upon us. Like her mother, Ella has a special affinity for Christmas. We decorate the house right after Thanksgiving, plus send and receive greetings cards. We bring out festive clothing and hand stockings by the fireplace. We play Christmas music and watch…
Ella received an invitation in the mail for a birthday party. The parents called earlier in the week asking us if a dance party would be something Ella could participate in. We told them that she would be able to participate if one of us goes…
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