365 Days....

One year ago today our lives were irreperably changed. With one phone call our world was turned upside down, never to be the same again. Our beautiful baby girl was diagnosed with Rett Syndrome. I feel it a herculean task to try to relay everything that has happened in the past 365 days. There have been so many different feelings, triumphs, heartbreaks, hopes, fears, joys, sorrows.. you name it, we have had it. For me, looking back, I think the first few months were spent in disbelief plus a pretty abundant amount of grief. Once I realized that it was ok to grieve, that my feelings of loss were not unwarranted, there were tears, and lots of them. To be honest, there was more than a healthy dose of anger as well. I was mad, so angry that this could happen to our baby. Aren't there enough nasty adults around to inflict this kind of thing on??? I didn't drink when I was pregnant, I took all the vitamins and then some, I followed all the rules...why?? Why do women who don't take care of themselves or get pregnant as teenagers and flaunt it on tv have perfectly healthy babies??? I quickly realized that I wasn't going to get any answers to these questions..that I had to come to terms with it in some way. I also realized that this was our new reality and that our baby needed help and I needed to be not only her mother, but her voice, her advocate, her warrior... I needed to get her all the things I could to help her fight. So the months that followed were filled with research and devising a plan of action. What therapies were needed? How do we get the best ones? How were we to balance our existing life of work, taking care of a household and a young son with Bella's needs? Soon the calendar became filled with physical therapy, occupational therapy, speech therapy, hippotherapy, more therapies than I ever knew existed. We learned a new language, we learned about the medications Bella needed and we started our new routine. It was bumpy and frustrating and at times it felt so completely overwhelming and it was lonely. We were no longer one of the many, we were one of the few. Our reality became completely different than our friends and others in our lives. It was at this time that I realized I needed to reach out to others in the same situation. I needed to reach out to other Rett families. It was by far a turning point for me and reflecting now, it was the best thing I could have done. We were embraced immediately by this community, other Moms and Dads, Grandparents, sister and brothers of Rett Angels and suddenly, I felt less alone, less different. Over the course of this year I have met some of the most amazing people I have ever met in my entire life. These women (I say women because that really is the majority of who I interact with, but it does not in ANY way discount the husbands, fathers, and other members of families I have met) but these women have become such an integral part of my existence. They are a constant source of comfort, understanding, inspiration and pure, true friendship. For me, as Bella's Mom, it is such a gift to not have to explain myself, to be able to just give a look or say a word and immediately have other Moms know exactly what I mean, without me having to say it. Its not a club I wanted to be in but I am so THANKFUL that I am now a part of it. As the year went on, and the shock subsided some, something amazing happened, we began to see our Bella thrive! We began to see that all the juggling and expenses and constant vigilence was paying off. Bella was making such amazing progress... she went from barely being able to sit up to taking steps while holding our hands, then while holding one hand, to scooting around on her little bike, and as recently as this week, to swimming in the pool at therapy alone with her swimmies and a tube!!! The months I spent crying in the hallway outside the physical therapy room as Bella screamed and whaled during her session were worth it!! Worth every second..to see the pride on her face as she swims around. To know that now at physical therapy all you hear are her giggles as she works at climbing a stair or two. With time, I have accepted that our milestones are different..but I also have learned that our reward is just as sweet and dare I say perhaps even sweeter than those I had expected before Bella was born.. to catch the rare "Ma" or "Da" or "Yeah"..it is just priceless. We all sort of look at each other and say "Did you just hear that??"..as Bella sits there and smiles. Over this past year we have learned so much about our daughter, who continues to patiently wait for us to understand. We are finally catching on to her ways of communicating with us. She is so incredibly smart and has worked so hard at educating us as to what she needs and what she is feeling. Our reward?? Well, its that one in a million, one million watt Bella smile. Ahhhh.... it never, ever, ever loses its effect. To say I have changed over this past year would be an understatement.. everything I have ever believed in has been tested. Someone once said that "my soul was changing" and I believe that to be true. It has been a forced change, that is for sure, and it has been painful, but it has been for the better. I can honestly say that I truly know what is important in this life and this is not lip service, I believe it with everything I am... it is not how much money you make, or what kind of car you drive, or what clothes you wear, or what your job title is, or how many vacations you go on, or who has more than you... there is absolutely nothing more important in this life than family, MY FAMILY.... my husband, my daughter and my son, first and foremost, without reservation, 100% unconditionally, are the MOST IMPORTANT thing. They are what I live for. I am nothing without them. And I know that I will move Heaven and Earth, I will claw and scratch and fight to make sure they are safe, happy, healthy and feel loved. If I can do that, then and only then will I be successful. I have said it before, but I will say it again, Bella has given us the gift of perspective. She also has shown us the good in people, the generous, caring, loving goodness in humanity. From family to absolute strangers, Bella has had a positive effect on everyone who comes in contact with her and I could not be prouder. I always say she brings out the good in everyone she touches. We have seen how united our family and friends have become in this fight. And in all honesty, sometimes the support and love and genuine caring has come from the least expected places, from people who had either been part of our lives in the past or had just briefly passed through..and then, of course, there are the constants, those who have always been here and who have never left..who have only loved us stronger, held on to us tighter, who have laughed and cried right alongside us, who have never waivered. To say we could have never made it through this year without them would be an understatement. We have a long road ahead of us..and I am learning that the key to survival is pacing. I am learning that it is an up and down ride, that there are waves that will continue to throw us for twists and turns. There will still be days of grief, saddness, fear, joy, and hope, and that each must be acknowledged to get through. I am acutely aware that it "takes a village"..and that we have more than a village, we have an ARMY. Bella's Army. This year has also illuminated something I always knew,from the day I fell in love with him...that there is no better man, partner, father or husband than mine. He has endured so much this past year and has always managed it with such grace and patience and quiet strength. It hasn't been easy..its not easy on either of us alone, nevermind as a couple. But he has given everything he has to our family, to our marriage and I could not imagine any greater partner in this fight. His unending love for his children, for his Bella, is breathtaking. I am so grateful he chose me. What will the next 365 days hold.. that remains to be seen.. although I have some pretty high hopes and some crazy mad determination that it is going to blow this past year away. Bella starts the clinical trials in September/October, research and trials are popping up all over the country and the world.. the race to a cure is on, it is relentless and those involved will not stop until its done. As I am writing this, the World Rett Conference, yes, by world, I mean people from all across the globe, are meeting in New Orleans to discuss the breakthroughs in science, what the research is showing and all the ways they are fighting this demon. I will most definitely keep you posted on what I find out!! Bella will start school this summer and I know she will just love being around other children and will continue to thrive and make HUGE strides..lauging, giggling and stealing hearts along the way. Well, Rett Syndrome, we made it, one year down and though you might have thought you got us pretty good, we are still standing. In fact, we are stronger, we are re-grouping and we are coming for you..there is no place to hide.