Wednesday, February 4, 2015

Perfect Imperfections

Adoration of the Christ child. Artist: Follower of Jan Joest of Kalkar.  circa 1515. What is interesting about this painting, is that in the mid 1800s, there was talk in the medical world that down syndrome was more of a modern phenomenon. But then this painting was discovered a decade ago.  Notice the date on it. And of special importance,  notice that the angel and shepherd were depicted as having down syndrome. 

The big day is approaching! March 21, which lends itself to be down syndrome awareness day merely because of numbers. 3–21. Trisomy 21. That gorgeous combination of chromosomes that includes an extra copy of number 21. In my eyes, it was part of God's perfect creation balance.  Shortly after Luke was born, I signed up to be a part of the Mayo clinics DS research group, which entailed having parents of individuals with DS, answer a number of questions via a survey.  The results would direct their time and money, as far as research goes, with the overall goal being to improve the life of those with Down syndrome. I was thinking, great!   What perfect timing! This could impact Luke's future!  As I scrolled through the survey, taking my time to put much thought into each question, I was quickly thrown off guard. Not only by the questions, but by my answers. They were questions asking if I as a parent, would choose to increase his intelligence. And by how much.  And if I as a parent, would change some of the physical features of my child with DS.   Question after question was pertaining to removing part of who Luke is.  I sat there and stared at the screen, profoundly  realizing that Luke is how he was made. Could I rank what we would want different? Could we prioritize what exactly we would change?  And to what degree from 1 to 5?  By the end, I felt so honestly annoyed by this survey.  As we get more into genetics, will we be sending out surveys asking parents if they would choose the more easy-going personality in a child, to avoid the tantrums in the toddler years?  I myself was a spicy little girl, so where would that have left me in the future?! And I for sure would've been tweaked in someway with my genetically severe myopia, and early cataracts at the age of 39.  And let's not forget the time in my life when I struggled with fear and anxiety! I truly am a mess.  Why do we in our simple human form, constantly strive to take adversity, difference, and hardship out of this world. This is the underlying question that I was left with.  And I look at my sweet Luke, and all of our children, and see such beauty and perfection, even in their imperfections. I cannot tell you how in love I am with Luke's little thumbs, as much as his squeals of delight when his daddy pretends to eat his tummy!  And as far as health conditions go with DS, they give the rest of us a chance to not take life for granted, enjoy each healthy day, and turn to Him for love and support. Open heart surgery is for sure a test of faith! But he survived, as was God's will. And we survived! And we are all the stronger for it.  I have yet to meet a parent of an individual with DS, who would have things any other way. They accept them and their family, just like they would any child, regardless of the ability or disability. I know that one of the biggest messages that the DS community likes to get out is that these children are more alike us than different.  But I also want to emphasize, it's okay to, if they are different. Truly, we are all different.  Truly we will all face adversity in our lifetime. And most likely we all will have different challenges, to varying degrees. It's all part of this life. Part of His master plan...creator and artist.