It's a common theme when Rett syndrome enters your life: one day can be utterly unbearable and then next, just like that, is heaven on earth.
Avery's 5th birthday-a day I had been dreading a little bit more every day since she turned 4-arrived on Friday. Red had swung back by the house after his workout because he forgot something and he got to see her just as she had gotten out of bed. He and I sang Happy Birthday to her and she just smiled at us so sweetly. It was a heart-melter. The day started great and ended well. Well, it ended with me stressing fully about the party that was to happen the next day. Would we have enough snacks, pizza, cake, and most importantly BEER? (We did) Would Avery have a great time or would she be a squawking puddle on the sidewalk? (She did and she wasn't!) Would it be too hot? (It was perfect)
I won't drone on and get all philosophical about it because I am reminded of something I learned in a philosophy/religion class in college-it was something about how when you tell someone about a certain experience, it changes the experience a bit so that it no longer means what it once did. ahhh, philosophy. So, in that spirit I will just say-it was heavenly. Avery had a smile of pure joy on her face from the moment we arrived. Even while she waited in the car for us to unload all the party goods. She never squawked once-unless from pure delight. When she saw her friends Katie and Claire (who also have Rett) she was calm, smiled, giggled. She was in her element, so to speak-that element being WATER. She loves it. She goes and goes with her little Teva's on her feet and her Safe T Seal vest. She likes to go it alone. Luckily Red took her in most of the day b/c he is so much more relaxed with her than I am.
There were many moments when I looked around and saw our closest friends and family and thought-wow-this moment-this day-is awesome. We have a wonderful life. Both my kids were having fun without much effort on our part. We had so many people willing to help. It totally overwhelmed me when it came time to sing happy birthday-I got choked up for sure. Avery was all smiles and it felt NORMAL.
After that, Avery had about a zillion popsicles. I swam with her a little and we had fun. It was just the best day. I thank everyone who was there for coming and supporting us-especially Claire and Katie. It felt so good to have you all there. We all felt so loved-still do.
Our glass was no where near half empty or half full that day, it just filled up and overflowed. So full.