I've been sitting here with this post window open for over 30 minutes and for one of the 1st times I'm not sure what to write. Yesterday was a really sureal day for me. I started the morning taking tons of pictures and an hr into the day the camera was put away not to be seen again until this morning. I just spent the day in the moment with my family, instead of behind the lens. I took gifts out of packages, I played on the floor with the kids, I cooked, I visited with family, I stared at my tiny man alot. I cuddled with my man. I watched how Eli explored the toys and the wrapping paper, I watched how he tired. I watch him take TWO tiny little "crawls" forward to get to a new toy he wanted to touch. I just absorbed this holiday. I enjoyed it and I worried about what is to come. I tried to not think about next Christmas, as for me right now it's such a scary thought to think that far ahead. I'm trying to will myself to just live in the moment, and try not to look ahead as right now the future is a terrifyingly unknown for us.
The kids had a good day. We woke up to Santa presents and stockings. Then headed to my parents for christmas breakfast and presents. Then home for presents here, and an amazing christmas dinner. We spent alot of time hanging out together. It was quiet and slow and relaxed. It was just our day.
They got alot of great presents. They got leapsters and nintendo dsi xl's and a wii, and books, puzzles, bikes, games, toys, video games, extras, and so many more things I can't name right now. Eli got alot of sensory toys and things to touch and feel. He seemed to really enjoy soaking it all up. Bob and I both got gift cards to our absolute favorite spa retreat location, as well as some new things for our kitchen!
Today bob is at work, and the kids are at my parents. They spent the night there last night so that everyone could just get up and head to church this morning. Tiny man is still asleep. He's worn out from yesterday. I watched him as the day went on and saw how drained he was getting. He took 1 nap, pretty short, and went to bed fairly early. I'm hoping the day didn't wear him out to much. Going to try to keep everything pretty low key for him today, atleast as much as possible.
This next week brings us into some serious conversations. The wheels are all slowly turning, but this week everything gets a shove forward. We have all the information for some local Mito specialists and we will begin the process of getting all the records in and appointments schedualed. January brings alot of big appointments. Eli has his new appt with the neurologist, his hearing test, pulmnologist, PICU admit for CPAP, and hopefully a Mito appt. We also begin ASL classes in January as a family. I'm not ready for January. I'm not ready for the information we will learn this next month. Not ready for the decisions that we will have to make. I'm just not ready.
i will get some pictures from the holiday up today or tomorrow.
Merry Christmas to all!