Meet the McNeil Family

Meet the McNeil Family

Friday, July 8, 2011

Slowing Down

The past few weeks we have noticed a significant change in Waverly. She use to wander, walking from her bedroom to the living room into our bedroom if we were in there. She would go to the gate in front of the kitchen or run to the door when Matt would come in from work. All of a sudden I realized she is much more stationary. She prefers to stay within the living room, moving from floor to couch and back again. She no longer wanders into her bedroom to page through her favorite books. I don't find her up on her bed snuggling Baa-Baa. Gone are the days of her "stalking" me whilst I am in the kitchen, hoping for a treat.

You would think I would have noticed the change. But sometimes in the day to day life with Sanfilippo, I neglect to notice the obvious. I have been preoccupied with Oliver; watching him ever so closely for signs of regression. I missed what is happening to my little girl.

The one thing I have learned in my three plus years with Sanfilippo, is that sometimes these changes are temporary. In a few weeks time I may find her plopped in front of her bookshelf once again. My fear is that this is a new stage, a new normal with which we need to adjust. I remember reading about children slowing down as the disease progresses. I thought that sounded wonderful at the time - dealing with a 4.5 year old girl who could no longer sit still and thought running away was the silliest game. The mania stage was so difficult. I miss it now. Wavey still loves to run away when we let go of her hand, but she typically only makes it a few steps before she falls or runs out of energy. I miss that devious little laugh, as she pulled away so we would chase her. 

I suppose this slower phase means more snuggles, more time spent reading our favorite books and cuddles during movies. I will need my energy, because I have a 4.5 year old little boy who is going to begin the manic stage soon. Best rest up.

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