Christmas 2009 This was Sissy's first Christmas. I was looking forward to creating new traditions with my family of four; Christmas lights, Santa visits, Christmas Eve dinner and Christmas morning presents. I carefully selected the kids' outfits so they would be picture perfect. My Christmas tree was adorned with ribbons and ornaments. My Christmas Eve menu had been selected. I was ready, but a week before the big day we received a phone call we would always remember. It was 7:00pm and we had just cleaned up the kitchen from eating dinner. The house phone rang, which is usually either my Grandmother or a telemarketer. My Hubby answered. It was Sissy's genetics doctor. It had been weeks since her micro array test, and since every other test's results prior had come back "normal" we were not expecting much from this test either. I knew the minute my Hubby said the doctor's name that this was not going to be a good call. Most doctors do not personally call you with results, especially not at 7:00 at night, unless they are delivering news you would rather not hear. It was the first time we heard the numbers and words that would chart Sissy's future : 2q23.1 Microdeletion Syndrome. I started crying before my Hubby even got off the phone. He hung up, called my Mom and Dad and asked them to come over. I just remember holding Sissy in my arms and sobbing. How can there be something "wrong" with my sweet girl.
We met with Sissy's genetics doctor the following week (3 days before Christmas) to discuss what Sissy's new diagnosis meant. He used words like "rare", "unknown" and "uncertain". Then he read a long list of symptoms "seizures", "microcephaly", "small stature", "poor eyesight", "low muscle tone", "severe global delays". It felt like I was checking off items on a check list. All of the questions we had up until that day were answered, however, they were replaced with a million new ones. Genetics spoke with Sissy's pediatrician; they started making referrals and appointments started filling up our calendar. I almost didn't even realize that Christmas Eve had come.
I remember going through the motions that day. Trying to make everything "perfect" for my traditional Christmas Eve dinner. The table was set, food was prepared, guests had arrived. The timer went off and I pulled my Roasted Chicken out of the oven, only to notice that I had cooked it upside down. It was completely uncooked! I snapped. All of the emotions that I was trying to hide for the last week came pouring out. That chicken was a big giant metaphor for my life...flipped upside down! My Dad managed to salvage dinner, which we ate in awkward silence, almost an hour later than expected. So much for my "perfect" dinner...my "perfect" life...
Today I gave myself a break and did not host Christmas of 2010 (thanks, Mom). Tonight's dinner was the first one, in a long time, that I was proud of. The menu was simple and stress free. The table was set with our everyday dishes and and we all crowded around our kitchen table. Cozy. Conversation was light and everyone enjoyed themselves. We opened a few gifts after dessert and the kids were in bed before 8:00 (we thrive on a schedule). Looking back, I am proud of everything that has changed in our lives. Sissy is diagnosed with a rare chromosome disorder, with a long name, that no one has ever heard of, but it does NOT define her. There is nothing "wrong" with my sweet girl. She is a blessing and inspiration to not only our family, but to many others. Tonight at dinner, Brother proudly said the blessing. I'm not sure how important that would have been to us 2 years ago. We received a very nice, hand written thank you note from Sissy's genetics doctor for thinking of him during the holidays by sending him a Christmas card. He is part of the amazing team of doctors and professionals that are working together to make sure Sissy lives a full, healthy life. Words like "uncertain" and "unknown" no longer scare me. If nothing is certain, it means that anything is possible. My life is far from "perfect" and I am perfectly fine with that!
May the spirit of the season help you find what is important in your life. Wishing you a "perfect" holiday, filled with the things that make you truly happy. From my family to yours, Happy Holidays!
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