Tag Archives: feelings

You scream, I Scream (on the inside)We all just SCREAM!

See this picture here. This is our life, a roller coaster, but our kids are not screaming because they think it’s all fun and games and neither are we. I’ve seen a lot of post lately, from new parents and … Continue reading

Posted in anxiety in Rett syndrome, Communication, Rett Syndrome, screaming in rett syndrome, Trail to a Texas Trial, Uncategorized | Tagged , , , , , | 2 Comments

Awareness Through New Eyes

We are half-way through Rett syndrome Awareness month. So far, it’s sucked; not only for the Rett syndrome community, but I know for the FoxG1, as well. I also know when we speak of “Awareness” it’s usually in the context … Continue reading

Posted in cure, hope, Neuren Pharmaceuticals, Rett Syndrome, the sea, Trail to a Texas Trial, Trofinetide | Tagged , , , , , , , | Leave a comment

The Eyes Have It!

Ask any parent of a Rett child and they’ll tell you…”I can tell she understands, I can see it in her eyes.” Katie’s eyes are such a beautiful blue. They sparkle so. But, I don’t get to just admire them, … Continue reading

Posted in Rett Syndrome | Tagged , , , , , , | 1 Comment