Thursday, July 12, 2012

I realize this blog is seriously lacking in pictures. I had bought a domain from Google in order to start a website. I wanted to post videos, pictures, links to AS websites, etc. Truth is, there is no time. I try to keep in touch with families via Facebook and my new obsession..Pintrest. I try to get up early, stay up a little later, and squeeze in five minutes every now in then when the kiddos are playing nicely. Finding the time to stay on top of a website seems a little out of reach at the moment. I do love writing on my blog, even though many posts stay unpublished!

We just returned from the spending a week at the beach with family. It was a tough week. Emma has become very unsettled when away from home. We spent many nights in our vehicle listening to music because it was the only thing that calmed her. Brian and I love our time at the beach. We have always been so excited to share these times with our kids. It scares me to think that vacations won't happen as often because Emma is so unhappy. I don't want Angelman Syndrome to take that part of our life also. Emma woke screaming one night at about 2 a.m. I did not want to wake everyone in the house, so we snuck out to the truck. I was exhausted because I had decided to stay up a little later after I put the kids in bed. I was drained physically and emotinally. Everything outside was so dark and still. I felt so alone. I had a little pitty party after putting in a DVD for Emma. We did get to watch the sun come up over the ocean, so there is something! When I have a night like that, I like to do something challanging the next day. Feeling so hopeless the night before, I wanted to do something that just felt right. Something that would be typical yet still provide a challange. Something that would let me know that I could do this, that everything would be ok. I fed Emma a quick breakfast and we headed out, just her and I. We shopped, without putting Emma in the stoller. I made her push behind the stroller. I let her cruise the aisles, let her push the buggy though Marshalls. She seemed so typical. Mom and daughter shopping trip. We then went to luch by ourselves.  I talked to her, she smiled back. It was a great day. I felt recharged and ready to take on the rest of the week.