I know that this blog was written to share Emma's journey with AS, but this experience has been such a journey for me as well. It is not all sunshine and roses in my house. I have some days where I am just plain ticked off at what Angelman Syndrome has done to our lives. I think about what Emma would be doing if she did not have AS. I can actually sit and imagine the conversations I would be having with her today if it were not for this diagnosis. I can honestly say that I despise Angelman Syndrome. This is where the guilt comes in... how can I despise something that is such a big part of my daughter? I recently told a dear friend in the AS community that we would "get through this". We seem to have our bad days at different times, which works great because I know I have someone to pick me back up. After making this statement, I started to think. Emma's life should not be something that I have to "get through". I need to enjoy every moment of the life we have together because I'm just not going to get another.
This has always been my favorite time of year. We have had a few losses in the family around the holidays in the past several years. Although I think of these people often, I try to not let it damper the holiday spirit. Yesterday I woke up and immediately thought about how fast we were approaching the one year mark to Emma's diagnosis. I thought about how our lives had changed since our last Thanksgiving together. Do I really want to spend every holiday from now on a bitter and angry person because Emma can't tell me with her words what she like on her Thanksgiving plate or what she wants Santa to bring her? No way, I will not let AS sabotage my time with her.
I know that there will be some rough days ahead. I also know that we will get through them. Emma is so happy and healthy. Our journey will be a different one than we had planned but it will still be a great one. My goal from here on out: I will no longer let my worry over the future, rob me of the days I have with her now.