Monday, May 11, 2015

The Down Side of Down Syndrome

On Friday May 8th at 2:00pm Clara Dey was laid to rest. She was a 15 month old darling little girl who lost her struggle with Down syndrome. While I love to share the up side of Down syndrome and all the accomplishments that our kids can make, there is a down side to it.

The medical problems that arise from that extra chromosome are many and sometimes they cause a life to end before it really even starts. Clara spent a huge portion of her life in a hospital room yet her smile was one of the most incredible things you could ever see. Her resilience was amazing and those who knew her will be forever touched.

Down syndrome is about much more than learning difficulties. There are medical complications as well, sometimes serious ones. Their yearly check ups always bring about a sense of anxiousness even when you know all is well. While Gess' heart repair went smoothly and she is now healthy and strong you can't forget that things like Leukemia and Alzheimer's disease are common in persons with DS and can pop up later in life. You just never know what the doctor might say.

In fact, when Gess was born and in the NICU for 5 1/2 weeks the tears I shed were not over her mental struggles but her physical ones. Hearing my daughter was going to have open heart surgery was truly frightening. We were blessed that it went perfectly, with no complications. While more often that not that is the case, sometimes things don't go that way. Sometimes, after months of struggle, you are forced to say goodbye to the child you love with all your being.

I can't even fathom the deep loss that the parents are going through. They seem to have a deep faith and are strong, but I know that this road will be long and hard. Please pray for them. Also pray for other families around the world suffering the same kind of loss and hardship.

These events have led me to not post on my blog all week. I just couldn't bring myself to write anything. One Sunday I finally had the privilege of meeting Clara for the first time and holding her in my arms. The next Sunday she passed away. There was no way I could write.

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