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…
Ava started junior high school this past fall. It’s the first time she’s attended a different school from her brother, Henry, and her sister with SMA, Ella. She made the transition smoothly, waking up before everybody else to catch the 7:15 a.m. bus, navigating the halls of her…
Ella was out of her therapies for over a month due to her broken ankle. She started back this week with both aquatic therapy and physical therapy. She has new therapists because her longtime therapist took a leave of absence. I sat with…
Ella’s temperature rose overnight last week. She woke up with a sore throat and body aches, so she stayed home from school, which put a strain on the household because of her extra care needs. Lindsay, my wife, works as a children ministry…
Ella is curious. She seeks answers to the perplexing world of an 8-year-old, always wondering about the things she sees and experiences. She has a keen sense of people and their emotions. When fighting with her brother and sister, she is the one who often offers…
