When I was growing up, there was the most amazing and wise man who lived across the street. I grew up in the country, so across the street was a 10 minute walk across 5 acres. When we were older we called him Sweetie, but as a kid he was Mr. Snyder. To my mom, he was James. This wonderful man knew many things, and he lived a great life with sadness and of course love and happiness too. He was a rock of support and words of advice. He was never judgemental and he always had a kind word to say. We spent lots of time with he and his wife growing up. He always smiled and never had a harsh word. You knew he would support anyone not matter their mistake because he knew we all make mistakes. That was the kind of man he was. I've been thinking a lot about him today because of the humble life he lead, the smiles that he shared and the wise words he passed on to my mother that she passes on to me. She might say in a time that I need comfort, "Sweetie always said a little bit at a time, baby, a little bit at a time." Many times in my life, I have come back to the words of wisdom that he passed on to me. The words that made life seem simpler. I think about the compassion he showed other people because he knew he didn't live in a glass house. People are cruel. People are compassionate. It amazes me. Sadie has opened my eyes that people have flaws and people are human no matter their genetic defects, tics, physical deformities,0 why do people have to be so cruel to people that just can't help the way they are. Oh ignorance is bliss. Life is life even if it isn't perfect.
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
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...
-
and the flu panic begins... http://www.cloroxclassrooms.com/downloads/teacher_brochure.pdf
-
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...
-
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...