Which is worse…

I saw this post from another mom who lost her young daughter to Tay-Sachs disease, a disease in the same family as Gaucher’s Disease.  I share it because she puts into words exactly how I feel… Is it worse to hear the words, “your daughter has Tay-Sachs disease” or “I’m afraid your daughter is not […]

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GT23 Foundation – Gaucher’s Disease Type 2/3

GT23 Foundation - Gaucher's Disease Type 2/3

I am very proud to support the new GT23 Foundation, an organization dedicated to make a REAL difference in the lives of Gaucher’s Disease Type 2/3 children. The focus is going to be working with innovative researchers to find a treatment for our Type 2/3 children, not necessarily a cure. As my type 1 friends know, […]

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Please Remember…

A dear friend sent this to me tonight, and so much of it rang so true for me. Things Grieving Parents Wish You Would Remember… 1. I wish you would not be afraid to mention my child. The truth is just because you never saw my child doesn’t mean he or she doesn’t deserve your […]

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Moment of True Happiness

I had a dream with Hannah in it last night.  A good dream. I’ve been waiting for her to come into my dreams, just wanting to be able to spend time with her.   All I have had are pictures, videos, and memories … but nothing new. The only dreams that I have had involving […]

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My grass is a bit greener tonight

I can’t stop thinking about those children in Connecticut tonight.   How horrified they must have been to see that “thing” come into their classroom and start shooting at them.   How their last thoughts before they died were of intense panic and fear. Those children … oh my god… Their parents.  Forever will they […]

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Vivid Memories from One Year Ago Today

Hannah ready for this holiday

  December 4, 2011 Hannah passed away at 10:10 pm on Sunday night, December 4th, in my arms after a weekend surrounded by all of her grandparents, aunts, uncles, cousins, and good friends. Today was the one-year mark since Hannah passed away.   I don’t know what word you would call it – I don’t […]

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