My Turtle

Waverly is having a difficult week.  She is so unsteady on her feet.  We are not sure if this is a phase and we will soon see improvement or if this is continued regression.  We know her hip flexors are extremely tight.  She is walking hunched forward, almost tipping over.  She keeps collapsing to her knees and she is crawling to furniture in order to gain support as she gets back to her feet.  At times she looks like a turtle on its back, unable to get into a position so she can pull up to standing.

We are trying to keep her moving as much as possible.  We are stretching her and forcing her to get up using her own strength.  It is not easy to watch your child writhe around on the floor, desperate to change positions.  I want to run to her and help, but I know she has to stay strong.

A dear friend and fellow Sanfilippo mom said recently that she feels like she is experiencing death by a thousand small cuts.  I thought that was one of the best descriptions of how I feel each day.  Each change, each loss of a skill, each word that disappears is another wound.


s.a. said…
I wept reading your post, but I know that I simply cannot fathom the depths of sadness that you must endure. I am so sorry that Waverly has this horrid disease.
Anonymous said…
Many times, Shannon, there just aren't words to express my hurt and sorrow for you. But I just wanted to say I'm here, listening, loving and praying...

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