Here is another column focused on “Rare Disease Day” which is on February 28th. The column is “A Rare Disease Day Reflection: We aren’t Just Inspirational Tiny Tims” written by Matthew Lafleur
It bothers my son at times when people refer to him as an inspiration, strong, “special”. Living with a rare disease is hard and being brave and putting on a happy face is not easy and shouldn’t be expected.
Thanks for sharing this, @colleensteele. I had many favorites in this column. Matt had me feeling all the feels. I bet Cullen enjoyed reading this. Being “special” is not what we want; we want to be “normal,”(inclusive) whatever that may be, lol.
Like Cullen., I am not a huge fan of that, but I am guilty of saying that to others. Warrior, PHighter, and Hero are some of the ones I tend to use.
The second quote that you shared was the one I told Matt stood out to me the most. Very well written.
I hope that y’all read this and let us know what resonates with you.
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