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Carys's Sponsored Walk. aliisaacstoryteller.com. #livingwithaspecialneedschild 'cardiofaciocutaneoussyndrome #raredesease

A Carys Update: July 2018 The Sponsored Walk

Some of you may remember my recent Facebook posts about the school sponsored walk. In some ways, it’s a bit ironic that a little girl who can’t walk is being asked to go on a sponsored walk. Walking… Read More

Carys, out for a walk in her new wheelchair, smiling. www.aliisaacstoryteller.com

A #Carys Update: May 2018 A Good Night’s Sleep

I am sitting on the edge of Carys’s bed. She sprawls across my lap, fuzzy head tucked into the hollow of my neck, small arms clutching me tight. It is incredible how much strength there is in her… Read More

Carys's AFO's.

A Carys Update: Febuary 2018 Is This the End of AFO’s?

I haven’t posted about Carys for a long time, not because there was nothing to tell, but because progress has been a long slow plod of repetitiveness and, I know it sounds awful, but yes, monotony; not particularly… Read More

The Joy of Walking and Making Sense of the Senses

Sometimes, things happen in our lives that fill us with deep joy; we can feel it swelling and expanding within us until it is so great, we think we might just burst, because we can’t possibly contain it…. Read More

The Politics of Walking | An Update

Today, Carys’s walker was sent home from school with a note saying, “We don’t need this at school any more, we don’t use it.” In other words, in the week and a half since I took the Walkolong… Read More