Ella is 8. Caring for her is a team effort: Dressing, bathing, toileting, and transferring are some of the tasks Ella needs help with. Alongside this physical assistance, Ella, like every child, needs support with her mental and emotional growth, confidence-building, schoolwork, and character development.
Last week, Ella’s mom, Lindsay, was admitted to hospital with a suspected reaction to a new prescription medication. She had a fever of over 104 degrees, severe pain in her head and neck, and a very low white blood cell count. We were concerned for her health.
It was up to me to run the house: Laundry, cooking, getting ready for school, housework, and child-rearing fell squarely on my shoulders. Ella and her two siblings were worried about their mother and asked many questions about her condition, but I had no definitive answer to give them.
Neighbors and friends provided meals and came over early in the morning and after school to help with the kids since I still had to go to work. People gave us gift cards to restaurants. I exchanged many texts and emails about the children’s care and Lindsay’s condition. It was a long week.
The kids had to get up earlier than usual to get ready for school and leave enough time for me to get to work. They took on more household chores. The doorbell seemed to ring nonstop as people dropped by. Even the dogs learned to adjust.
The house had a different atmosphere during the week that Lindsay was gone. While there was tension, there was also a feeling of connectedness. We depended on each other more than we usually did. We put our heads together to solve any problems that arose. We tried to make everything as “normal” as possible.
Lindsay was discharged from the hospital without a conclusive diagnosis. The doctors chalked the episode up to a severe reaction to medication. She is still being treated for pain and recovering slowly. Our home is returning to normality.
Ella did great during this time of uncertainty. She showed maturity, adjusting to the disruptions to her routine, keeping her sense of humor, and expressing her concerns about her mother. She proved herself to be a very mature 8-year-old.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.