The old saying, “You don’t know what you have until you lose it,” rings true these days. We took our accessible van to Superior Van and Mobility in South Bend, Indiana, about two hours from our home. They diagnosed the problem with the ramp…
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 so excited,” Ella kept saying the afternoon before her first rehearsal with the Young Naperville Singers. When it was finally time to leave, we loaded her and her manual wheelchair into the van. (The broken door on the ramp side means we cannot…
Our brand-new accessible van has a broken door — the door on the ramp side. For now, we cannot take Ella’s power wheelchair when we go anywhere. Fortunately, she has a manual wheelchair to use. We pull out the van, lift Ella onto the back seat, and place…
The first day of fourth grade was wonderful for Ella. She woke up early and I got her dressed and ready to go. Along with her brother and sister, Ella posed for the annual first-day-of-school photo before leaving. Henry, 10, Ella, 9, and Ava, 12. (Photo by…
The back of our accessible van was loaded with luggage. We set the trip odometer to zero and zoomed off to Gatlinburg, Tennessee. It was a nine-hour drive and the kids did a great job of being patient. One of our church friends gifted us…
Ella turned 9 years old in June. We have noticed lately that she is gaining too much weight. We’ve had Ella on the amino acid (AA) diet since she was 20 months old. Over the years, we’ve made many adjustments to the diet in terms of ingredients, volumes,…
Ella had a fun-filled week. Her cousin and aunt came in from Virginia to spend some summer time with the Castens. Her other two cousins, who live in Chicago, also spent time with the family. Family outings can sometimes be a challenge. We have to make…
The house went from quiet, clean, and calm to noisy, messy, and crazy in a matter of minutes. The kids are home from camp! Ava and Henry attended a camp called Covenant Harbor and Ella attended MDA Summer Camp. We purposely scheduled their camp…
Last week was Vacation Bible School (VBS) at our church, St. Timothy Lutheran Church. Lindsay is the director of the church’s VBS program and puts months of work into preparing for the week’s events. All three of our kids look forward to VBS, as they know how much fun…
The last column I wrote was about waiting for our bathroom to be remodeled so that Ella can have privacy and dignity. We’re happy to announce that this modification has been completed and Ella loves the new bathroom. Each time we do a project allowing for greater independence, privacy,…
Ella is growing up. She just turned 9 on June 10 and will be entering the fourth grade this fall. Her mind is as sharp as a tack. She’s starting to understand sarcasm and the ways it can be used. She is expanding her friendships to include a variety of…
Our house is filled with music and song. Ella turned 9 on Monday. In light of her joining the Young Naperville Singers, we decided to get her a karaoke machine. She was delighted at the prospect of hearing her voice through the speakers. We downloaded an app to go…
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