Finding Answers

I stared at the page in front of me, then back to the hand written scribbled name on a folded napkin, could this be right, I start at the many medical opinions and just sat in a world of the unknown. I quickly hit delete and type out the name again , nope it was correct first time as the same page blinked at me in confusion. I slowly dragged my mouse over the first of many websites, as I clicked the words, Trisomy 13 burned its place on my computer memory.

What led up to this moment of confusion was a series of events, the big one was when this un named baby girl not even cleaned from birth showed up at the mission here in Haiti on July 23rd in un wanting hands due to her disfigurements. She was born with a cleft lip, cleft palate, extra digits, a un developed right eye, crippled hands and a wonderful ability to turn purple. She was quickly named Sarah Rou and even more quickly fallen in love with. In all of this she was passed off to a new type of family one made up of hearts near and far that were beyond ready to fight for her.

As she became a part of the mission family, answer started to be sought trying to connect her many disfigurement to a possible medical name. Pictures were taken and many state doctors were talked to until an answer slowly arrived. I was simply told that Sarah had a genetic disorder called Trisomy 13, but I soon realized that there was nothing simply about that disorder at all. Those simple words were what placed me in a foreign world of big scary adjectives such as not compatible to life.

I swam in this scary world for hours while Sarah slept nosily on my lap until I found a bit of dry land to cling to while searching a particular site called www.livingwithtrisomy13.com The scary adjectives were still there but so was hope for support and understanding. I accessed knowledge through emailing away my frustrations in hope for some type of reply.

Not even a day passed before me and my little girl Sarah were adopted into this new family of parents who had or have a child with this disease. I was ushered with open arms into an online support group where our story were shared and my email box became instantly full from responses of love. Through the scary adjectives of Trisomy 13 I saw people living to the fullness with what they have. I saw love that was bigger then the threat of death and for some still there and growing through death.

So, my little Sarah has been in my life for 26 days at 6.5 ounces and at 20 inches long. She has so far beat the one statistic that claims that most don’t make it past a week. With her in my life I know for a fact that my life hasn’t been the same since. My little angel has me wrapped around my finger, no complaint on my side though even through broken nights, rough feeding and health reasons, she is my girl. She loves to cuddle, sleep right across my stomach at night and just be held.

Through Sarah since her birth I have seen amazing individual come out of the wood work and do amazing things through prayer, support and even the last minute dashing to the store to pick up needed items or having local a hospital donate certain needed items that were shipped to me. Whether or not it is realized by these individual are totally being used by our God in BIG ways. So, weather or not my Sarah makes it, it is not what will be burned into my heart, but the simple understanding of how big our God is through such a little forms and just all the hearts that are forever touched.