Thursday, June 2, 2016

Aaron (2012 post)

Aaron! What can I say about Aaron? You cannot be around him without smiling! He has sparkling eyes, and a smile that will make smile! Aaron is joy! 

WHAT IS TRISOMY 18? Aaron's mother ( Rebekah) gave the best DESCRIPTION- check it out!

"Trisomy 18, also known as Edwards syndrome, is where a child has three of the 18th chromosome. Most people have two of each chromosome, one from mom and one from dad. In a trisomy, the child gets two of one chromosome from one parent and one from the other. Think tricycle, three.
Imagine if you made a batch of cookies and it called for two cups of sugar. Sugar is good, it's necessary for the cookies to turn out the way you expect them to. But instead, you put in three cups. You then proceed to mix and bake the cookies. 
They're not going to be the way you expect, and it's the same way for that extra chromosome. Our bodies don't "read" the code well when there's an extra portion added in, and it causes all kinds of complications.
But just like "typical" children, there is a wide range of abilities and challenges for children with a trisomy. Many of the anomolies occur along the mid-line: the brain, the mouth (cleft lips and palates) the heart, lungs, diaphragm, and kidneys. Some are more severe than others. 
Each child is unique, each is special. I like to use the sugar in my analogy because each one child is so sweet. In our home, we say that the 18th chromosome holds the secret to love. Aaron got an extra love chromosome, and he uses it to bless our lives.'

Aaron has defeated many of the odds that stood in his way, and overcome many dark days with the light he brings! Aarons gave me a sense of "believing". It is hard to put it into words. Hope with an assuring peace that life is to have joy.
50% of babies who are carried to term will be stillborn. Baby boys have higher stillborn rates than those of girls. Less than 10% of children like Aaron make it to their first birthday, Aaron is now 4, still teaching all who come into contact with him.
One thing I noticed right away was that Aaron was part of a big loving family! His brothers and sisters love him so much! They were all more than willing to show us how to get Aaron to smile, and all of his machines!
Aaron has been a constant and continuous source of hope and inspiration for many years. How has he been able to to so much? Because, his mom rocks, and has this AWESOME blog ( link below). Rebekah is SO talented, and well- Aaron got the best mom he could possibly give. As I was talking to Rebekah I was astounded with all that she had to do. Taking care of Aaron seemed to be a job for an army. Even with the nurses, and other children, It was hard for me to see how she could handle this all together. Near the end, however, I was beginning to see how. Rebekah had learned what Aaron was teaching us- hope, and joy. There is no doubt in my mind that she is one of the strongest ( mentally, physically, and spiritually) mamas I have ever met. Im sure there are days that are hard, and seem too much. Im sure I am not the only one to say," Rebekah, you are the best, and I have no idea how you do it. You do it so well, and Aaron is blessed beyond measure to have you as his mom, never doubt that!!!" Thanks to Rebekah's blog, Aaron's story can be shared all over the world to bless the lives of everyone! I encourage and challenge everyone to read and share this blog. It will change your life- I promise!


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