• Kendall

Sitting or Standing, I'm There


My sweet Brooks drew this chalk masterpiece in the garage. When I told him how amazing it was and asked him to explain it to me, he said, "That's me and daddy throwing the baseball, and that's you, sitting and watching!" I asked, "sitting?" and he said, "ya! sitting on your walker and watching me!"

That makes me feel so many things. I am so proud of his creativity, memory and ability. I am so happy that he has fun moments like that running through his sweet head. I love that he wants to relive it and capture those memories in a tangible way.

I am heartbroken that his memory of me is "sitting on your walker." That is so NOT the mom I wanted to be. I wanted to be the mom out there running and playing WITH him, not "sitting on my walker" and watching.

I am honored to be included in his beautiful drawing - I am grateful that he sees my attempts to be involved. I just wish my involvement was different. Mainly, I just want a cure for Friedreich's Ataxia so I can get back to the life I want. But in the mean time, I will continue to show up for my kids and do what I can because it obviously makes a difference. Sitting or standing, I'll be there!


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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

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