It's very quiet here tonight. Everyone else is asleep. I should be asleep too. We have snowmen to build in the morning. However, I have a million thoughts bouncing around in my head. I need to work them out.
Let's see. I last left off at the new year. Since then, I've been home with Charlie because I didn't take a work position. It's the usual roller coaster of ups and downs over here. It's rare for things to be purely up or down. I'll sort them the best I can.
We'll start with the ups:
Charlie and I have been working on a Dance Marathon fundraiser with a group at my alma mater since August. Well, the group did the work. We just went to a bunch of events, brainstormed, and cheered as they worked to their $100,000 goal. The school isn't large, is over an hour away from the hospital, and is located in a rural town. So, $100,000 was a pretty optimistic goal.
The morning of the main event, they were still a little over $20,000 shy of their goal. We danced and the students did just about everything they could think of to raise that last bit. At one point, a few of us even cut off and donated our hair. We tried everything.
At the end of the night, they announced the total raised as something like $99,000. It was a number so close to the goal that I looked down, sighed, and thought "Too bad. So close. Next year." But, as they usually do... they shifted some numbers around and it said $104, 249. The parents of the student that chaired the event hugged me while the mom cried. I hugged her back and start crying. The students who worked so hard on the event were crying and hugged me and Charlie. That moment felt better than winning the state championship. I've never been so proud of someone else's kids before that night. They raised over $25,000 in one day. It was incredible.
At the end of this month, we move off of the mountain to Charlottesville. We signed a lease on a town home. For the most part, I'm okay with the move. But every now and then, I feel the loss that comes with it. I will miss living in the mountains. I will miss being relatively close to DC. I hate that it's a move of necessity rather than choice.
But, I'm trying to look at it as a new adventure. It's just not an adventure I've chosen. For some reason, that's the part that bothers me.
Next.... This is for all of you ladies... No matter where you are on the political spectrum, you are still my friend. I can have friends that I disagree with on things. It doesn't bother me.
That being said, Charlie and I have become politically active. Or rather, I've returned to the scene with Charlie. It's been a unique experience. The good of it is not simply that we are active (although, I feel political action is vital). It's the time we spend together. The people we meet. The adventure. Sharing my beliefs with her through example. Teaching my daughter to stand up and participate. And, the feeling of doing something when you feel powerless.
We've been to several teach ins, a couple lobbying things, and many, many protests. I have some fabulous stories from these to share but this post is already long enough. I'll save them for another time.
Now, the not so great stuff.
First, Charlie is no longer doing feeding therapy. It's going nowhere. She may need more time to mature before she is ready. It's just not in the cards right now. It sucks because I have to consider that we may never be finished with this preemie stuff. She may never "catch up". I despise not knowing weather to keep on hoping or to accept and adapt. To me, that is the worst part of the entire preemie journey.
Next on the list, I have to have more oral surgery. It's a revision of the major one I had a year ago.
Finally on the list, this latest growth spurt has been rough for Charlie's muscle tone. She's losing range of motion and strength in her left ankle. She will have to wear an AFO on her left leg and the usual in shoe orthotic in her right. Supposedly, this is just a typical CP problem that will reoccur as she grows.
She was casted for her orthotics over a week ago. That day, we sat around in prosthetics and orthotics to wait our turn. I dreaded my sensory kid going through the casting process (she hated it as a baby). While we waited, another little girl stumbled out with her new orthotic and burst into tears. Her panic stricken face explained that she just grasped the gravity of her situation. Her eyes pleaded desperately to be anywhere but there at that moment.
I am no stranger to that feeling. It's too familiar.
The girl limped past me sobbing. We made eye contact and I said, "Oh honey, I know. I'm so sorry. But, you know what? It's going to suck but you can do this." She nodded solemnly. I don't think I helped her. However, that moment has stayed with me over the past week. I needed to hear it. That moment helped me.
Additional oral surgery is going to suck, but I can do it. Furthermore, it's not fair to ask the impossible of these kids if I'm not willing to try the impossible myself. I've decided to pick up my trumpet again once it's all over. (For the record, the orthotics guy did well with Charlie and she survived her casting.)
What's ahead for us?
Soon, Charlie will be tested by our new school system to see if she's ready for kindergarten or would do better in preschool. Through luck and several strange events, I'm taking Charlie to a few of her favorite band's shows. I decided that this is the last spring she won't be in school. Therefore, we may as well get out there and have fun.
I thought I was going to Jazz Fest in New Orleans. I decided months ago that I would go to find inspiration to pick up my trumpet. However, I'm going to sit it out and work at a clinic that weekend. I've found my trumpet inspiration. I'm looking for something else now. I'll know what it is when I find it.
I'm still going abroad towards the end of this summer.
That's about it. Now, you guys are caught up once again. I've scratched out my thoughts and emptied my head. Now, I can sleep.
I'm so glad to read a post from you:) I'm glad that you were able to get those words out so that you could get some zzz's. Very cool and congratulations on that fundraiser with your Alma Mater! Amazing total!! I'm relieved to hear that Charlie got through the casting alright and that the new ones will help. I'll be thinking of you as you prepare for the next dental phase too. As someone who has moved from paradise to the desert, I know that moving isn't easy in general. I know that you love the mountains and the parks. You've made A LOT of memories where you are, but you'll be making many more awesome ones in your new area.
I look forward to hearing about it all when you're settled in.
Sending big hugs and hunky movers,
Thanks for the update! You guys have been busy! Great work on the Dance Marathon! I hope that all of these big changes go smoothly. I love that you are teaching Charlie to stand up for her beliefs. She's already one strong little girl and she will be a strong woman, just like you. I hope the snowman building was a blast!
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