As I sit at the computer tonight I am torn in half with emotion. Claire was very upset this afternoon at a failed attempt at a wagon ride. Clearly she did not want to read the stories we picked, play the games we had, we just didn't have the right answer. After a short time out she calmed enough for us to talk. I asked if she would want to use her talker (her computer that reads eyegaze, we are in trial) to give us some hints for something that might help. I set her in front of it and she went right to the art page. Earlier in the afternoon she had made a paper snowflake with Jessi while I was gone. She wanted more. To see her light up as she instructed Jessi on what she wanted done with the art project was amazing. She was very clear. She wanted red paper with triangles. Just as the world of communication seems to be getting a little easier we find out her spine is starting to curve, not the end of the world. But I really was hoping to not start any new battles for a little while, oh well, change of plans. She was so worn out from the art direction she threw herself into that she was exhausted. I kissed them both and left for Jessi to read one last story. I started my wind down routine, check email and facebook. There it was, another angel flew home last night. That makes two in two days. Lucy was 14, Elizabeth 8. Why must the Rett Syndrome be such a monster. Why did it have to take a healthy girl who wasn't fighting. When will it take Claire? I love having her here so much, I pray that our day to say goodbye doesn't come for a long, long time. It is such a painful reminder, life is so rich and so fragile. We must be very careful with it. Growing up I was never exposed to children with life threatening situations. It was nothing that I ever thought of because there just wasn't much of it. Now I find myself surrounded by it. I know that it is with reason and purpose. I know God is with me. It is surreal, this crazy life that chose me.
Words can't explain, so here are a few pictures. I recently inherited my late grandmother's rolling pin. I woke up early on Thursday morning to make my pie crust with it. It was so good to be back in a kitchen and loving what I was doing. Then we went to a good friends house for the feast. As good as the food was, it wasn't even the best part of the day.
It started yesterday with my desire for a Christmas tree. We haven't had one for the last 4 years for one reason or another. I got irritated that I don't have the energy to 1) Keep a tree alive in our home 2) Buy one, put it up and eventually take it down. I started feeling resentful that we live with such little margin. We don't even have the means to celebrate Christmas! After getting the girls down Jared and I collapsed on the sofa to eat our Pizza My Heart (because we don't have energy to cook or clean up) and watch amazing race. We were both taken by every commercial revolving around the holiday spending season. That sure cured my desire for a Christmas tree fast. As I drove Claire to school this morning we discussed the thankfulness gifts that we are distributing to her entourage this week. Maybe it's just because gifts is my love language, but to me, it makes so much more sense to give gifts at Thanksgiving than Christmas. Christmas is the celebration of the birth Jesus and his gift of salvation to the world, it's about Christ. Not families or eating together or trees with lights. Which leads me to my next tangent, the White House holiday tree. Get over it people! Putting lights on a tree has to do with the celebrating of Christ how? I think it has a lot more to do with the material and commercialism of the holiday spending season. I think that calling it a holiday tree seems more appropriate that it being another symbol that devalues the true meaning of Christmas. So back to Thanksgiving. Shouldn't this be the biggest holiday of them all. As Americans we have running water, hospitals that are sanitary and do a pretty good job of not killing people, we can drive our cars to Starbucks and get a latte without even thinking about the back breaking work of the poor people on the other side of the world who picked the beans for us. As Christians we can rejoice that every day of the year God is intimately involved in the details of our life and that He loves us and forgives us despite our sinful nature. I have so much to be thankful for, I don't know that I am going to be able to squeeze it all in this week. My hope is that I won't and that I will have a spirit of thanksgiving all year, but I am a work in progress. I look forward to getting our Hanukkah menorah out and celebrating God's fulfilled promises. I look forward to eating lots of peppermint flavored treats and looking at lights because its winter and it gets cold and dark early. I look forward to our advent calender and birthday cake for Jesus. I like winter time because it has a lot of good celebrations and because the cooler weather brings us to do fun things that make us feel all warm inside. I don't buy into the "Jesus is the reason for the season" bit. Jesus is the reason for each day, every month all year long. Shouldn't we love on everyone like Jesus would want us to all the time and not just in December. Well there it is. You can tell I am feeling a bit feisty this morning, which is good, because I have been numb for far too long and it is good to be back.
I am so glad to have survived October. Every year now, that month kicks my butt. Now that we are more than half way into November I am starting to recover. The time has been filled with lots of really great and fun times. It is really nice to have a little time to breath and stop and be thankful for it all. Claire is making a lot of progress right now and I am finding myself overwhelmed. I really didn't realize how I had stopped dreaming for her until she started to do things that I had never dreamed of and the process has been amazing. This morning she sat at the kitchen table with her talker. She kept playing her favorite song, stopping after 30 seconds and then starting it again. I really had hear the song enough so I returned to the usual running around in circles getting ready to get out the door. Since the shock value was gone she listened to the song in its entirety. Once it was done, I heard the talker say, put, put. So I went over and she had gone to the dress up screen on her own. Again she started "put silly hat" On the table in front of her was her new rainbow striped hat with purple flower ear flaps. She wanted it on for school. In her own 4 year old way she was getting through to me that she wanted her hat on for school, how typical is that! I love how she reminds me to take big pleasure in the small things. The other thing that she is teaching me is that God has a good sense of humor. I don't get computers, I don't like them. When it stops working I normally unplug it, walk away for a few hours and hope it is magically better when I go back. I am not a girly girl, never was. I wear jeans and a t-shirt whenever possible and might put makeup on twice a year, if you count lip gloss. Enter Claire, who wants to use her computer that reads eye gaze to discuss what dress up dress she will wear to the tea party with her dollies. I seriously don't think that I could feel any less equipped for this gig. Yet somehow, we make it through the days and most of the time we even have tons of fun. Who knew? Will try to be a bit better about posting, I always say that and never am, but I am trying.