Tuesday, August 12, 2008
A Gift Beyond Words
August 13, 2007 is often referred to around here as Zoey's "second birthday". Sounds funny to some, I know. But for all of us who saw the absolute miracle performed that day, there really isn't any other name for it. That day, one year ago, Zoey had her AV canal heart repair. A perfect repair. It was a day unmatched by many others previous. There were moments when we wondered if in fact it would ever come. When Zoey's heart defect was first diagnosed at 20 weeks in my pregnancy, we were assured that it was manageable. Serious for sure but totally manageable. Little did we know that Zoey would come into this world hit hard in so many other areas, that the once manageable condition became anything but. She was immediately born into the category of congestive heart failure. Trust me, that is just not the term, you as a parent, want to hear about your hours old newborn. That and leukemia and stroke. But there we were, facing the unimaginable. We faced it together. All of us who loved Zoey. And there are a lot of people who love Zoey. That child was also born a fighter. That is another thing Zoey was born with. A undeniable fighting spirit. That girl fought from the get go. The 10 weeks in the hospital were the easy weeks in the beginning, believe it or not. Once she came home well, that was when things got kicked up a notch. Every single thing our family did or didn't do, revolved around Zoey. Mostly keeping her healthy and alive. Germ free zone for 3 1/2 months and that was a difficult feat with a family our size but we did it. I was and am, so proud of my family and the way they all so gracefully, unselfishly lived their lives during those difficult months. Finally, when pulmonary hypertension dictated it was time for surgery we all regrouped and banned together once again and got done what needed to be done. Especially Miss Zoey. I was asked by a few people that August day, if I cried when they wheeled her into surgery. The answer, no. I was just so absolutely relieved that we had gotten her to this day. That she had gotten to this day. It was not elective surgery. No choice. Zoey needed that surgery, right then, to live. We actually would not know how badly surgery was needed until after, when she began to recover. One of the first things that you noticed, when her little eyes finally opened, was the brightness. Before surgery, they were really a non describe color. After, they had color. They had life in them. Her actual skin color was the other thing. Pink. I finally had a pink little baby girl. When time came to extubate, that was when we noticed the next remarkable change. Zoey did have difficulty after extubation with upper airway restriction. As we teetered on the edge of having to reintubate, the Respitory Therapist and everyone were gathered around working on her. They had her propped up thumping her back and she was crying. I stood at the end of her bed watching and the Doctor asked me if that was her normal cry. My response, I have no idea because she had never cried in all of her 5 1/2 months of life. Zoey was so very depleted in so many areas that she reserved every ounce of energy and she never, ever cried. Ever. Once we got past that scary hour or so Zoey began her fight back. She was amazing. She showed us how much courage could be found in a small 12 pound little body. On about day four of recovery Zoey gave us her biggest gift yet. That gift was one I had been waiting for. That gift was something I had seen time and again, gracing the faces of so many other children with Down syndrome. That gift was a smile. We had never, ever seen Zoey smile except in her sleep. I yearned to see her smile and then all of the sudden it was there. It was as if she was saying,"Thanks, I feel so much better." She smiled at anyone and everyone. Her smile lit up a room. Her smile is contagious to this day and except for the time when Infantile Spasms invaded her life, her smile has been a constant. God has blessed us in ways too numerous to count and in ways that allow us to be humbled, hopeful and forever grateful that He carried us in our moments of weakness and strengthened us in times of trials and I have got to believe, rejoiced right along side us as Zoey overcame each and every obstacle set before her. Happy "second birthday" Zoey Grace, your strength, resiliency and determination continue to inspire us each and everyday.
*Zoey 6 days post op waiting to come home, Zoey's first bath at home after surgery and finally, today at the beach, all my little darlings!