Tuesday, October 20, 2009


I gave Bean a shower tonight...the effects of the steroids are evident.

Her belly…the one that I have always been amazed is so flat – was distended… firm – looked like it belonged on a different body.

I washed her beautiful dark brown curly locks…and my tears started to roll down my cheeks…the thought of her thick beautiful hair, the hair that at four years old she donated 11 inches of to locks of love….the thought of her thick beautiful hair thinning…falling out…is overwhelming to me.

It is so superficial all of it – I feel so guilty. We are so lucky that what she has is life altering and not life ending….I keep telling myself that. I keep telling others around me, in the hopes that at some point my heart will believe the words coming out of my mouth.

My wish for her – may she not suffer pain anymore, may she be one of the 1/3 of children who outgrow SJIR… may her self esteem prove as strong willed as she is….

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