Oh , that smile!

At about 12:15 am last night I was jostled out of a near deep sleep by my 16 year old. She had something to show me. I followed her out to the hallway, as not to wake Zoey, where she proceeded to show me our new blog header, one she had deemed "boring" earlier in the evening. She also loaded the "Little Wonders" song so all of you can hear it when you log on to visit us. I was so proud of her and seeing Zoey's smile was just the perfect thing to see before heading back to bed. However, as always with me, there is always a flip side. It's a nasty habit I have got to break. To understand what I mean you must have a little background on Zoey and her smile. At the beginning of her life I longed to see her smile. All the picture of Down syndrome children I had seen were of these amazing faces with radiant smiles. Zoey basically laid on her back for 5 1/2 months , g-tube fed for 20 hrs. a day and it took everything in her to just survive. It wasn't till after her av canal surgery that the reality of how physically depleted she was hit me. Maybe it was better that way. Prior to surgery Zoey could barely be held, as that was even stressful on her tiny frail body. She would gag and retch all day because the digestion of her milk was stressful for her tiny frail body. She only cried ONCE in 5 1/2 months because that was absolutely too stressful for her tiny frail body. It was the basic human instinct of fight or flight and boy did she fight. So there were no smiles,but then came surgery. I often refer to August 13 as her "birthday". That surgery gave her rebirth. From the moment we saw her eyes open after surgery, we saw light. Her eyes were brighter, she was brighter. After a tense hour  after she was extubated was over, she rested and then it happened. Zoey SMILED! It was like nothing you ever saw. It was if she was saying "thanks for fixing me, I feel lots better."  We have so many pictures from our 8 days in the hospital that are filled with constant smiles. Zoey smiled at everything and everyone from that day on. Then slowly the smiles came less often. She was letting us know something but we couldn't figure it out . Then one day the seizures began and then we realized why that smile was missing. I think that has been the most difficult part of the journey this past 6 weeks ,missing her engaging smile. We have seen it slowly emerging back since she started her medication but my fear is that the smile that lights up the header of this page is one I won't see again. Caitlin once said that if all Zoey ever did was smile and follow her around for the rest of her life ,that would be o.k. and I agree. I have to believe that that Zoey smile will once again light up our world. I have to believe.