The title of this column is “Five Servings of Strength,” referring to the five members of our family. There’s me (Michael, the father), Lindsay (the mother), Ava (11), Henry (10), and Ella (8). We realized soon after Ella’s SMA diagnosis that it takes the whole family’s strength to care for Ella properly. We pulled together as a family and took on the trials that came to us while we cared for Ella and provided for her needs.
Each of us brings a strength to the table. Each of us has frustrations, some common and some unique, in the struggles we face every day. Each of us relies on the other for strength.
This week, Lindsay and I had a heart-to-heart with Henry, Ella’s older brother. He was feeling left out and insecure. He felt that Ella gets so much attention and he often gets left by the wayside. He asked if he could talk to us about it.
We took Henry up to our bedroom where his sisters would be out of earshot. He climbed up onto our bed and began talking. He felt that Ella gets more attention and everything revolves around her. He told us that he tries to help but sometimes Ella bothers him and makes fun of him. He reiterated that he felt left out and added that he is frustrated.
Henry is wise beyond his years. He can pinpoint his feelings and find ways to express them clearly. We told him that we all get frustrated with SMA but just in different ways. We assured him that we love him just as much as we love his siblings. We explained the kind of help Ella needs and why. The conversation ended with hugs and a smattering of I-love-you’s. We applauded Henry for coming forward and expressing himself about such a touchy topic.
Our kids are getting older. They are learning about the world and how it works. They are dealing with new feelings, experiences, and realizations. Our family is an open book to many and each other. We share our thoughts, frustrations, and insecurities. In the end, we are simply “Five Servings of Strength.”
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.