When asked to describe my son on paper, he sounds pretty dire.
I just completed the required registration forms for his March ski adventure and had this realization. Most often, I think of him in terms of all that he does, all that he is. Inherently, I know he’s in a wheelchair, can only walk with support of an adult or equipment, requires special seating to keep him supported, is fed through a g-tube, and doesn’t speak.
These things are obvious but they’re never how I see him.
I like to tell him he’s my “yellow”. We both love that Coldplay song and while yellow is not a color I adore, in the context of the song, it’s a color I attribute to my boy. The stars do shine for him.
When I think of him I think of funny things he shares with me or of him skiing down a mountain, laughing or of him getting mischievous with my mom when we’re running weekend errands together. He’s just a boy like any other. Unique and perfect just as he is…
It feels strange to leave the description as simple as the diagnosis and challenges without adding all of the adjectives that I attribute to him when I speak of him or imagine him in my mind. He’s funny, smart, brave, and friendly.
He welcomes everyone into his inner circle and makes one feel content to be around him. He loves to dance, and goof around, and to make people laugh. He likes adventure and sports and isn’t afraid of doing things differently. His smile lights up rooms and his laugh can melt ice.
He’s so much more than anything I can describe on paper or with words.
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