School has started. Ella loves school. She’s one of those kids that adore playing school over the summer just to keep it alive for herself. She’s now in the third grade and loves it even more than last year. Because of…
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…
Aug. 12, 2011. One day after our fifth wedding anniversary. Ella’s D-Day — diagnosis day. No treatment. No cure. At the time, we suspected SMA as Ella’s official diagnosis, but it wasn’t until Aug. 12 that we received…
Kids grow … and Ella’s right there along with them. Since her spine surgery, Ella has gained a bit more than 5 inches in her height. And every three months, she gets her spine rods lengthened. She sits tall and straight in her wheelchair, and…
It’s been a long summer. The kids have found things to keep them busy, but playdates for Ella have been few and far between. That is, until new neighbors moved in just down the block. Our new neighbors are from New York,…
I stood in Home Depot watching an employee cut pieces of wood for me so I could build a foundation for the two sheds I’d just bought. He measured and cut, measured and cut. Once finished, he helped me pick out the right screws to use…
Ella and I sat at Dunkin’ Donuts, conversing about MDA Camp. (MDA is the Muscular Dystrophy Association.) She thoroughly enjoyed camp for all the wonderful activities she did, and especially for the people she became friends with. The camp wasn’t all peaches and…
Always have a backup. For the first time in her life, Ella is attending Muscular Dystrophy Association (MDA) Summer Camp. We had prepared for this adventure for weeks, reassuring her that she’ll be all right without her parents (for the first time in…
Family is important. A supportive family, both immediate and extended, is so beneficial when raising a child with SMA. People often do not know how to help. While there is no set of rules for how they can help, the best rule of…
Ella loves her friends. She loves going to school each day just to see them. She raves on and on about how helpful they are and how funny they are. She’s a very social person. Just recently, we received an invitation to…
Dogs are great. We have two of them. Potter and Ginny are Hungarian hunting dogs; the breed is known as Vizsla (vee-z-shla). Vizslas are extremely family-friendly. They are known as “Velcro Vizslas” because they stick so close to their owners. Ella and…
Dairy Queen Ice Cream Cake. A Cabbage Patch doll. Brush-tipped markers and a slime kit. A diary and a special drinking glass (filled with Hershey’s Kisses). All the goodies Ella received on her 8th birthday. It’s hard to believe Ella is 8 years old…
Ella loves playgrounds despite being in a wheelchair hindering much of what she can do there. The area of the playground she has always gravitated toward is the swings. However, she has been restricted to the type of swing that “buckles” the rider in for safety,…
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