If raising children is supposed to take a village then it is awfully lonesome. Thank goodness Sadie has a Medicaid waiver.
Sincerely,
A mother with a disabled child and everyone else is too afraid to touch her. She is the most wonderful, innocent child, full of kisses and hugs, eager to be held, and eager to look you eye to eye with her big blue eyes. I would trade anything to give her the power to learn.
Sent from my Verizon Wireless BlackBerry
Our life, our experience, our history, about my daughter with a rare chromosome disorder. She is missing a small portion of her 8th chromosome, which is called a deletion. She also has a small part of XP added to that. Her karotype or diagnosis is deletion 8p23.3 with extra xp22.2 to the terminal deletion (a new chromosome test summer 2011 changed her karotype to deletion 8p23.2 with extra xp 22.12, essentially meaning more missing chromosome 8 and more added xp). #herrarelife
Monday, December 7, 2009
Sometimes
Sometimes I wish Sadie had a physical marker for her disability. It is exhausting explaining a chromosome disorder and Intellectual Disability to someone who sees nothing physically wrong with her. No one seems to understand and it is getting very frustrating. And they really don't care to understand. Everyone goes about their life in their own bubble secretly thinking this can't happen to them and pretending it doesn't exist or affect them. Oh shall we all be so lucky to be so naive.
Time is a Thief
I don't remember the first time I heard the sentiment, "time is a thief." Recently it is heavy on my mind. I haven't post...
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and the flu panic begins... http://www.cloroxclassrooms.com/downloads/teacher_brochure.pdf
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Sadie has been having spasm type clinch arm and mouth type movements that last about 2 seconds randomly starting in June. For the past mont...
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Today I was feeling the need to read other stories about other children with chromosome disorders. I googled blogspot to see if I could find...