Friday, November 26, 2010

              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.

Friday, November 5, 2010

A Little Late....

Wow! So much has been going on. I guess I have been a little neglectful to this blog. We have sailed right through summer and now I am hearing Christmas songs in stores. I will try to catch everyone up but I am sure I will leave some things out. We had a great summer. I enjoyed every minute I got to spend with our little girl. We had a couple of great beach trips thrown in. We got so many great pictures of Emma enjoying her wagon on the beach. I hope that next year we have pictures of her running on the beach. We shall see! The Anat Baniel Therapy has been going great. I have noticed so many differences. Emma was never really transitioning into and out of sitting until we started this therapy. Now I am happy to announce that the baby proofing has begun! Emma is pulling up, cruising furniture, and can beat me in an army crawl across the room. Still not putting her hands down to crawl but she gets where she needs to go. She also is doing well pushing her walker around the house.

We have continued to work on the Alphabet Therapy with Emma. She really has done well with that. I think I mentioned in an earlier post that she has learned to identify her colors. We are working on shapes now. I am in awe at our sweet girl. She knows so much! She is showing me everyday how much she really does understand. How incredibly frustrating it must be to understand what people are saying, to have your own thoughts and feelings, but have a body that does not cooperate in sharing them. We will go in January to see a specialist who will advise us into which augmentative communication device will be best for Emma. Until then, we continue to work on using picture cards for communication.

Well our first Fall Fundraiser to benefit Angelman Syndrome, was held last weekend. It was so much fun and I am extremely happy that we things went so smoothly. We raised almost 3,000 dollars for research. A huge thank you to our wonderful friends and family that worked so hard to help the day become a success and to everyone that joined us for our first festival. We would never have been able to do it without you! We love you all very much!
We are going to take a little fundraising break before we start planning for our golf tournament in the spring.

Brian, Emma, and I are headed to Nashville this week. We have enrolled Emma in the Natural History Project at Vanderbilt University. She will see some of the top neurologists and geneticists associated with Angelman Syndrome. I am looking forward to spending some much needed time with my family. I hope that one day we will make this trip to start Emma in some sort of clinical trial for a treatment for AS. I think about this every day and will never give up hope that the day will come. One of our many dreams for Emma is that she will one day be able to say the many things on her mind including a thank you to all that have supported her.