Reply To: Just trying to understand

Frustratingly slow is a mantra we know. Two steps forward and one step back is a familiar dance too. But I love “long curvy road with speed bumps and a frustratingly slow speed limit!” My daughter has the desire and sometimes the energy to want to work harder or get better faster, but then we have days like this morning. It took an extra 15 min to get my daughter moving this morning. She’s stiff and in pain from last weekend’s infusion. We’ll have 2-3 more tough mornings, like this, then she’ll hit a good stretch of mornings.

It’s a disease I wouldn’t wish on anybody. We keep a blog here: http://www.pragmaticturtle.com I try to post the things that have worked for us to share with others.