Ella’s excited to start school. She adores her school, her teachers and her classmates. Now that summer is coming to a close, Ella counts the days until she can begin going to school every day. Each day this week, she barrels in and out of the house, onto…
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…
“I’m sorry you have SMA,” Lindsay said to Ella. “Me too,” I echoed. Ella’s head moved to the side a bit as she looked at us and said, “I know.” Ella is becoming increasingly frustrated with having SMA. She has…
Bathing suits, sunscreen, towels, and water. The key ingredients for some summertime fun. Almost all kids love the water and Ella’s no different. We all know the feeling of floating, yet for Ella it represents a sense of freedom — freedom from the constraints…
Children engage in all kinds of play throughout the day, from quiet play to rambunctious play. Ella is no different, although her terms of engagement can sometimes be different from your typically developing child. When she goes to the park, she races…
Children grow. They grow older. They lengthen. They gain weight. The same is true for kids with SMA. Because they are wheelchair-bound, their caregivers spend much of the day lifting them in and out of their wheelchairs. Lifting them for various reasons can be…
“Get off the pillow!” screamed Ava. “It’s my pillow. You get outta my room!” yelled Ella. “You wanted me in here…” argued Ava. “Well, now I don’t, so GET OUT!” screeched Ella. It’s a game of…
The nature of SMA Type 2 makes everyday tasks difficult. Brushing teeth, getting dressed, and even drinking water can pose challenges that require others’ help. Accepting help is part of my daughter Ella’s daily life, something she’s become accustomed to from…
Around almost every corner of each wall on our first floor we have small corner protectors. This is to combat Ella clipping the corners as she cruises around the house. We purposely bought our current house because the doorways from room to room are wide…
Her lips quiver, but days before they sported a wide smile. She grabs for my hand in an attempt to gain comfort, but a day before she gave me high fives. The noises from her mouth are those of distress, but days before they were squeals of joy.
Just overhead, an ominous, black cloud lingers despite a gentle breeze. The sun shines brightly behind some errant white clouds and blue skies peek out between. Slow, rolling movements make us wait to see which weather will prevail. In the distance, a rainbow forms, arching across…
The battery level on Ella’s power wheelchair Flashing lights, beeping sounds, and a host of power in her little grip. The Permobile C300 is Ella’s power wheelchair. A 304-pound purple machine that provides her with mobility. The C300 has indicators that allow its drivers to know how…
Henry, Ava, Ella, Daddy, and Mommy. Ella is an almost 7-year-old who has been driving a 300+ lb power wheelchair since she was 18 months old. She has had her share of banging into corners, taking chunks out of the drywall, and catching herself in doorways. Occasionally,…
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