Monday, January 3, 2011

Day 118

Monday December 13, 2010

We had another sleepless night. This time it was between 2-4:15am so not as long as some nights but I was bummed because this morning I had to wake her up. We had an oncology appointment for Avastin so she couldn't sleep in. Poor baby!!

As we were having breakfast, I told her my friend Sunny was going to stop by with some Christmas presents for her and Teddy. She immediately started to complain and this is a synopsis of our conversation:

N: I don't want anyone to come.

R: But Sunny loves you and wants to bring some presents. Isn't that nice?

N: I get scared.

R: Who scares you?

N: Your friends, the people that come.

R: Why do they scare you?

N: Because they look at me.

R: Oh honey, they love you!

N: They look at me and want to eat with me and I get a big smile (gestures from one side of face to the other) and I don't like my face is chubby....I don't like my look

R: (I hug her!) Oh sweetie, you're beautiful, inside and out! You are soo very pretty!

N: I don't like them eating.....they watch me....

R: I'm sorry honey, I didn't understand that made you uncomfortable. Do you feel like you have to talk to them when you're eating.

N: No...they watch me.

R: Okay sweetie.

N: I don't like going places....I stay in my stroller because everyone stares...they want to know why I am different...the medicine puts a lot of water in me....makes me chubby....I am not the same.

R: Oh sweetie. (I kiss her again!!! My heart is breaking) I understand.  How can I help you feel better? Would it help if people don't eat with you?

N: Yes!

R: How about if people come to visit for a little bit and you don't have to talk much, you can just say hello and if you don't want to talk to them you can just tell me you want to watch a video.

N: I like Sponge Bob.

R: Yes honey. And if you don't want people to stay you just call me next to say "Mama, come here! I want to say something." and you can whisper that you want them to leave and I will have them go away. Is that okay?

N: Yes! (with a smile)

R: Do we have a plan?

N: I want to watch Sponge Bob (blowing me off!)

R: (I laugh at her blowing me off) Do we have a plan Miss Nina Banina?

N: Yes. Find the one with Squidward as Gary.

R: How am I suppose to know which episode is that one?!

N: (Gives me the stink eye!)

After I found that damn episode I went and texted Todd and our families and friends. This made perfect sense now. We'd known that she was self-conscious; we could tell from her behavior. But to hear her voice was a whole other level of sadness for me! I desperately wanted to take that pain away from her and put on me! She shouldn't have to be struggling with these emotions, with feeling insecure in her own body! It was so cruel, simply cruel! My angel!!! Inside my head, I screamed toward Heaven!!! Please make her better!!!! Sometimes I don't even realize that my mind is screaming is an involuntary response, like my soul is on auto-pilot because the rest of me is having to work so hard. I just get sooo pissed off!!! My sweet angel girl should not have to be going through this and I can't do a single damn thing about it!!! All I can do is sugar-coat things for her, distract her with activities, try to make her happy and laugh. Aghh!!!!! I feel so helpless!!!!!!!!!!!

I composed myself and off to the oncology appointment we went. The Avastin treatment this time went without a hitch. Sunny came baring gifts, which Nina said she preferred to open at home along with the ones that the clinic had for her. She explained that she wanted to open them with Teddy. Sweet girl! I also spoke to Dr. Greenfield about Nina's insomnia. He was incredibly helpful and spent a ton of time brainstorming with me the best course of treatment. Eventually, we decided to start her on a dose of Atavan and see how that worked!

The rest our day went well. I needed that after my morning. After school, the kids played with Cami and Katie and had a blast. It was amazing to see Nina keep up with the kids. She proclaimed she wanted to find bugs so Cami raced home to find a container. I loved watching Nina search the ground for specimens, her sweet little finger combing through the dirt. Teddy gave the girls rides on his motor-cross bike, ever so manly ;) The kids spent the next hour searching for bugs. Half way through, the visiting nurses from Hospice came by and I quickly caught up with them.

While we were outside, Teddy told me how excited he was about the Cub Scout Christmas Bash that evening. I called Todd to make sure he remembered, which he had not and to top it off wasn't feeling good. He suggested our friends take Teddy but I decided that wouldn't do, so I took Teddy. At first, Teddy protested and said he didn't feel well either and wanted to stay home with dad and Nina. I insisted that we go because when we have commitments it is important that we stick to them, play our part. To help things move along, I suggested we go out to dinner, just him and me, like date night. He looked at me skeptically but once we were at the restaurant, we had a fabulous time! He told me all about his friends at school and his wish list for Christmas. I relished that one-on-one time. Teddy is such a joy!

Date night!

Once dinner was over, we set off to leave but I couldn't find my keys. I searched every where but couldn't find them. I was just about to go look in the car to make sure I hadn't locked them in accidentally when Teddy turned to me and said, "Looking for these Mamacita?" What a turd!! His new shtick is to play tricks on me! He was so proud of himself it was hard not to laugh! I laughed and flicked his hat as I passed by, which he found hilarious in a silly boy way!

Teddy and Thomas looking dapper!

The Cub Scout Christmas Bash was fun. Teddy hung out with his buddies, did some crafts, decorated a cookie, and made a gorgeous Christmas card for Nina. I was extremely happy that I had come! I wouldn't have missed it for the world! When we got home, he proudly gave Nina his card! He has such an enormous heart! He adores his sister and it inspires me!

1 comment:

  1. Amazing how well at 5 years old that she can articulate how she is feeling and what she needs to feel better!

    And, Bravo mommy for embracing her and her feelings as well as acting upon them when she asked. As parents you are doing such an amazing job with both Teddy and Nina and adjusting yourselves to accomodate their needs and their feelings. No matter how many stink eyes, barks, growls, sassy words or negative outburst they may throw at you, continue doing what you are doing because you are doing a beautiful job!

    Prayers for more good days and tons of strength to get through the tough moments!