I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
It’s one thing to go through a hardship yourself, but it’s another thing entirely to watch a hardship happen to a loved one. As a parent myself, I know how parents feel any pain and sadness that their children endure. In fact, a child’s pain can almost seem greater for the parent because they often think they are helpless.
Therefore, I can only imagine how it must be for my parents to watch me struggle through Friedreich’s ataxia (FA).
What did my broken bones feel like for them? How their hearts must break when they see me become more and more disabled every single day. What do they feel when they see me struggle to walk, even with a walker?
As a parent myself, I am gutted when I think about how they must experience my FA struggles. So I decided to write an open letter to them.
Kendall’s family. Back row, from left: her husband, Kyle; her father, David; and her brother, Cameron. Front row, from left: her daughter, Collins; Kendall; her son, Brooks; and her mother, Shirley.
The letter
Dear Mom and Daddy,
I love you. I love being your daughter. Growing up in your household was the greatest privilege, and I feel ridiculously lucky to have the distinct honor of calling you my parents.
Yes, FA is genetic, but you had no idea that you were harboring this sleeping giant. I know that you were just as blindsided as me when I received my diagnosis, and I also know that you felt guilt over FA being part of my DNA. But let me assure you that I have never and will never blame you for FA because all of the wonderful things that you have intentionally given me have made a greater impact on my life than FA ever could.
The countless parenting decisions, time, energy, resources, care, wisdom, and values that you have poured into me my whole life mean so much more to me than FA.
Through your unconditional love, you have taught me how kindness matters. You have filled me with confidence, self-worth, vulnerability, strength, and character. You have introduced me to Jesus, the most important relationship in my world.
Your generous example of living life with a servant’s heart is one of the most beautiful things to behold, and I am humbled to regularly benefit from it. I can’t even begin to attempt to count the number of times and ways that you have shown up for me and my family.
I know that my health complications and my subsequent needs are vast. Thank you for all of the times that you helped me when Kyle, my husband, was occupied or unavailable.
Thank you for loving my children as if they were your children. I know how impactful it is to be on the receiving end of your love, and I don’t think I will ever be able to find the right combination of words to convey the depth of my gratitude. Thank you for providing a sense of normalcy to their abnormal childhood by filling in for my many gaps and shortcomings. Thank you for simultaneously cheering them on and challenging them to do their best, just as you have always done for me.
I constantly have to choose between getting upset about FA and exercising patience with my limitations, but I can do this because of how you raised me. Thank you for always letting me feel whatever I was feeling, meeting me there, and then helping me find a way forward. Thank you for allowing me to be vulnerable and reminding me that staying positive doesn’t mean that I have to be happy all the time. Thank you for reminding me on the hard days that better days are coming. Thank you for constantly reminding me of the empowering truth that I can choose how to respond to challenges, and for weighing my choices with me.
You deserve all of the wonderful happiness that this crazy beautiful life has to offer. I am sorry that FA broke our hearts and become a part of our family story. Rest easy knowing that you equipped me to handle this life. I am going to be just fine because of you.
I wouldn’t trade being your daughter, even with FA, for anything. Thank you for being you, and for all of the ways that you love me. I love you more.
Your grateful daughter,
Kendall
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