A Thank-you Note to My Biggest Supporter

Living with an adult child who has a terminal disease is challenging. It demands patience, flexibility, kindness, perseverance, and advocacy.

I don’t claim to always possess all of these attributes, but I try my best. Life gets in the way, though. I work outside the home and try to live my life with normalcy, and sometimes my workday or events that happened throughout my day make it hard to be the ideal caregiver when I get home.

My daughter Abby is a 25-year-old with Sanfilippo syndrome. She functions like a toddler, or even an infant, in some aspects of her life. She is completely dependent on others for all of her basic needs. Sanfilippo syndrome presents like Alzheimer’s disease in that people lose abilities they used to have. In Abby’s case, she has lost almost all language and most of her cognitive abilities, whereas she used to be much more self-sufficient.

Abby has a full-time caregiver, Aly, who is with her every day. Aly’s presence with Abby makes it possible for me and my husband, Jeff, to work full time. Jeff and I trust Aly completely and are so grateful for her every day. Watching them interact affirms for us that Aly is the right caregiver for Abby.

This column, however, is meant to focus on Jeff. I have mentioned Jeff in the past, but he deserves more recognition than he receives. Jeff and I have been married for 27 years, and he is sincerely the person with whom I am meant to share my life. We have always supported each other, especially when pertaining to our daughters, Abby and Emily. However, he is an exceptional caregiver for Abby, and he has been there for me throughout my cancer journey, too.

I was diagnosed with stage IV cancer in 2015, and because of metastasis, cancer has been an ongoing medical issue for me. Jeff was handed the role of caregiver when I was diagnosed, and when Abby was diagnosed with Sanfilippo in 2017, he was put on double duty. He has selflessly lived up to that role for many years now.

When I received my cancer diagnosis, my first thought was, “Jeff does not deserve this.” The guilt that washed over me was unrelenting. He has stood by me without fail, and every time we find out the cancer has returned, he pushes forward.

His unwavering support and presence have been so constant that they are unquestionable at this point. There are not many things we can depend on in this lifetime that can be considered unceasing, but I have it in him. And Abby has it in him, too.

Jeff, this is a publicly written thank-you note to you. I do not thank you often enough for your continual support, strength, and courage, and Abby cannot thank you verbally. So, thank you for everything you do for us.

We both accept your help, encouragement, prayers, and love with gratitude. Abby and I could not live our lives as we do without you in them. We love you very much and are so grateful for everything you do for us.

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Note: Sanfilippo News is strictly a news and information website about the syndrome. 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 Sanfilippo News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Sanfilippo syndrome.