Monday, July 11, 2011

Normal? Unique?

I have been thinking lately that all I want is for everything to be "normal".  I was talking with a work/friend who doesn't really know my situation but she descriped it as "unique".  But when she said that word, I paused, it seemed to descirbe my situation.  I actually loved that word "UNIQUE".
     I grew up in a "normal" family with a mom, dad, sister and a brother. We went on family vacations, all the kids made good grades and nobody was ever arrested.  Normal or Unique?
     I graduated high school, went to college, made a pit stop back at home, worked at a bar, got my masters, met a man with perfect teeth and got married... Normal or Unique?
     Married for 5 years before we decided to have children (didn't even know that we were going to have kids) and had a perfect first pregnancy.  I taught  5 aerobics classes a week, just like I did before I was pregnant and went into spontaneous labor at 35.5 weeks while Andy was out of town on business.  Normal or Unique?
     All my babies were born at 35.5 weeks.  Drew was 4#, Madison was 4.8#, and Chase was 5.2#.  Drew spent 8 days in the NICU, Madison spent 23 days and Chase spent 19 days in the NICU.  I never took a baby home from the hospital per insurance protocal. Normal or Unique?
     All my kids were born wtih an genetic autosomal recessive condition called Trichothiodystrophy.  There are only 137 people identified in the world with this condition and 22 in the U.S (this is Andy's math).  But we have 3. Normal or Unique?
     We are in a research study at the National Institutes of Health.  We get our eyes checked at the National Eye Institute. We get to actually sit and chat with doctors about our experiences and discuss options and possibilities... This is only UNIQUE! I have a few fabulous key doctors that are truely amazing and they too are VERY unique and absolutely NOT normal!
     We are waiting to see if 2 out of 3 children are going to be approved for sub Q IGg therapy to help boost their immunesystems. Normal or Unique?
    I had a friend tell me once that "everybody has s@%&t" and that nobody is going to trade and she is correct... After thinking about it, I will keep my "normal".

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