Trish and I discussed the #realliferett campaign for some time, even after she had finished the blog post she was worried that it might be too raw, too emotional. What she has done is incredibly honest and brave.
I think most parents dealing with Rett syndrome are brave, but society doesn’t like them to be honest.
This is what Rett syndrome in a society that chases perfection does. It elevates the pressure on a family by making you think you have to answer some perfect expectation.
People say you were chosen because you are strong, but that’s not true, you are strong because you were chosen.
We often talk about “being strong”, but the truth is that for many parents, especially the newly diagnosed, they are not strong, they are holding it together on the surface, but underneath they are crumbling.
This is the most vulnerable a person will ever be in their life. There’s no manual for this, no one prepares you for it, because society hides it away behind our veneer of perfection.
Parents need their families and friends more than ever at these times.
#realliferett is a window into those moments of solitude, where Rett tears into your life.
The most powerful campaign that Army of Us has ever run was the “Story of my life”; it was a tough campaign and ran contrary to everything we normally do. The campaign shared the things that Rett syndrome does and how it ravages those people who are affected by it.
I took great care in separating the disorder from the girl (or boy), but that campaign hurt in a way no campaign has since. For many parents it was an opportunity to explain the face of Rett syndrome that we don’t share.
I think #realliferett is the same.
It allows us to be human.
One of the worst things for parents of a child with Rett is “She can’t tell me when it hurts”.
Strangely enough, even though you can, you never do.
Thank you Trish, for being so honest.