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When Marian turned one I did not know if she would live to be two. That sounds like an exaggeration, it’s not. I only shared this thought with my very best friends because it was so horrible. At the time we knew Marian probably had a storage disorder, but had no idea which one. Only that lysosomal storage disorders are 100% fatal and 95% not treatable. She was barely starting to crawl, barely putting weight on her legs, choking on her food and was underweight and not growing

She's so small. That was my first thought when I first saw Marian, like a miniature porcelain doll. At Marian's early well baby visits her weight gain left something to be desired. It took her several weeks to hit 7 pounds and at Thanksgiving, when she was three months old, she only weighed 8 pounds. Marian on Thanksgiving weekend, weighing in at 8 lbs At Marian's 6 month visit she wasn't sitting up. The doctor pulled her from laying down to sitting and her head lag was appro

Some adorable and dearly loved friends, not from The Hunger Games. The title of this post is from The Hunger Games, I read all three books and saw three of the four movies. You have to draw the line somewhere and I just could not see the last movie. Phillip Seymour Hoffman wasn't even alive anymore when they filmed it for goodness sakes. In The Hunger Games, that line is said as a little cruel punch in the gut to the people whose fate hangs in the balance. Including those who