A year revisited. Abridged version.

Saturday May the 3rd will mark exactly a year since we brought Zoey Grace home. One of those things that feels like a lifetime ago but in other ways feels like just yesterday. 10 weeks spent in the NICU. 10 weeks filled with uncertainty. 10 weeks filled with trying to balance being there for an innocent, fragile newborn ,while at home, there were 5 other children that needed our physical presence but more importantly our emotional support. The idea of bringing her home was so surreal. We were overjoyed to finally be heading home after watching so many others go before us. What was harder though was watching the families who would not be going home anytime soon and still harder yet those who would not be bringing their baby home at all. Our time spent at Children's changed us forever. Mostly for the better. We found strength we never knew we possessed. We were able to walk out of there daily, even on the bad days and know we were blessed. We met people who we know now, will for sure, be friends for life. The good bye was difficult in some ways as it had become our home away from home. The people there saved our daughters life and were there to love her and comfort her when we were not. In a strange way we would miss it. Miss them. We left full of fears but also full of hope. Fear was probably my over riding emotion. I remember walking through the front door and wondering how in the world I was going do this. I had an urgency to run back out the door with her, to the safety of what I knew. I looked at all the equipment and the medication and the other kids and for the first time, doubted my ability. The first night was so terrifying. The alarms going off. The pumps needing changing. The fear that she might stop breathing. It all was so beyond scary. But we did it. One day turned into two, days turned into weeks, weeks turned into months. We managed to keep her healthy and quite frankly alive and get her to surgery. It would not be until after the heart surgery that the reality of how sick she had been, how weak she had been, became apparent. And maybe if I had known how medically fragile she was on the day we brought her home maybe I wouldn't have been as successful. Maybe my fear would have paralyzed me. After surgery, I would be lying if I said I did not have expectations. I felt that the most difficult was behind us. Behind her. In November we went to the Buddy Walk that benefits the local and National Down syndrome Association. I made big plans to immerse myself in our new found family. I over came my fear of speaking to large groups and after being asked to talk at a fund raiser, I really felt that maybe this might be my calling. I felt like, okay world , I can do this. Bring it on. Then came the seizures. They took me out at the knees and took me to a place that first weekend , that was so deep and dark. A place I had not even visited the entire past year. But here I was in a place I so did not want to be. I have kinda been hanging out in that place since that first week in February. Limbo. A middle ground. A purgatory, if there is such a place. Funny thing is, that the last week of Zoey's stay, she was in a room they referred to sometimes as purgatory. It was off by it's self. A holding place of sorts, for those babies waiting. Are they staying a bit longer or were they on their way home? Stuck in that middle ground. I feel rather stuck there right now. And although I thank God daily that Zoey's is here with us , it is so not where I thought we would be a year later. I never dreamed that after we got past surgery that we would find ourselves at such a point of crisis. Medical crisis. When you look at the list of things that Zoey's little body has been through , if you just take one of them, that would be enough. Instead you have a half dozen of really intense, really serious, potentially life threatening "things" she has seen and conquered. I never expected to be here but as I have heard on occasion, "Life is under no obligation to give you what you expect." It goes both ways though. I never expected a year ago that our lives would be filled with so many life altering moments. Wondrous, magical moments. Through adversity and sometimes despair, we found joy and hope. We found that one tiny child could change the way we lived. Change the way we viewed the world. Change our hearts. Change our lives ...... forever.