Thursday, February 17, 2011

Day 176

Wednesday February 9, 2011

Our night was again plagued by turmoil!!! Nina is deteriorating right before her very own eyes!!! The cruelty of this is unbearable, yet bare it I must!!!

Although Nina had slept a bit more than the night before, she was still plagued by misery!!! Seeing her in misery was eating away at all of us!!! Again, while I took Teddy to school, the girls slept in. Nina woke up around 9:30 and had already eaten two slices of jelly toast (the evidence all over her cheeks) when she said, "Mama, come cuddle with me. Come closer, I need to lay on you!" As soon as she did, she passed out for another hour long nap. Leave it to my honey-girl to bring me joy and comfort in the midst of the greatest tsunami of my life!!!!

Nina woke up again around 11:15 and shouted, "Where's Sosie?". Almost instantly, Sosie opened the bedroom door and greeted Nina with the biggest and brightest smile! "Sosie, come sit!" Nina demanded with the world's deepest happiness!!! My heart fluttered at seeing how Nina and Sosie loved each other!!!

Shortly thereafter, Danny saved the day again; this time he brought the kids pizza and me a sandwich from our favorite deli, South Coast Deli! Nina announced that she loved the pizza, which made Danny burst into the joke he had used all week long to make Nina laugh, "I'm glad you liked the pizza, but did you know that the neighbors have TWO BABIES!!" Each time Danny said TWO BABIES Nina would burst into hysterical laughter! Our neighbors did have twin babies but it was Danny's ridiculous voice and mannerism that made the utterance so goofy and funny!!! How I love making fun of Danny :)

Before picking up Teddy from school, Nina joined Sosie and I at the party supply stored and practically bought every single Spongebob decoration!!! Nina's face beamed with each new discovery we made. If only we could find a Patrick pinata!!!!

On our way back home, Nina fell asleep. I carried her into the house where Sosie hung out with her and sleeping Grady! I quickly went Kellogg to pick up Teddy but I couldn't find him any where. I was just about to go the office and find out where he had gone, when I heard his buddy shout, "See ya later Teddy!" I looked up into the tree and what did I see...a Teddy bird!!!

When we returned home, Sosie had a grin on her face and told me that Nina had woken up and asked her to walk to the bed. Sosie had done what I did with short distances, secured her by holding her underneath the armpits. Apparently, Sosie explained that Nina did not like this and had smacked her hard, then demanded that Sosie apologize!!!! I literally could not contain myself and just laughed at my rascally girl!!!

I spent the early afternoon monitoring Sosie and Teddy's homework. They are very similar in nature; both are brilliant and have incredible hearts but they are both disastrously lazy and helpless. If something is slightly difficult and they are not beyond motivated they give up. However, being Teddy's mom has taught me that all that s required is a pair of loving  hands to help mold and shape in the right direction. The entire time Sosie has been she hasn't complained about doing homework once. Quite the contrary, when I suggest she spend some time on it she does it without hesitation. She does find me to be a loving dork given that I am excited to sit down and help her read and comprehend Shakespeare's poetry! Once a dork, always a dork :) I did tell her that dorks can also be beautiful (trying to encourage her to let out her inner dork) but she didn't buy it :)

Around 6pm, Larisa came by to hang out with the kids while Todd and I went to sit by the pool to chat about Nina. In the darkness of the cold night, we sat and had the most wretched, horrific, and torturous conversation any two parents should ever have to have. Even as I write this it still feels like a nightmare, and I keep waiting to wake up. But I never do. Todd and I sat there and talked about how to carry Nina through death!!!!!!!!!!!!!!!! When you have a child you never expect that this will be a conversation you will ever have to have. But we had it!!!!! We cried!!!!!! And then Todd agreed that we could not drag Nina through misery, that torturing our honey-girl with things like a G-tube was out of the question. Bottom line (if there is such a damn fucking thing!!!!!) if we have to lose Nina we want to spare her as much pain as possible. Thank God our medical team can help us with that. And so....we agreed to discontinue chemo because it is no longer working and that as soon as our honey-girl loses the ability to swallow we would start palliative sedation. There is no possible way to comprehend or explain how it feels to plan for your child's death!!!!!!! All I can say is that it is wrong!!!! We are in hell!!!!!!!!!!!!!!

By the time we went to bed Sosie and I were exhausted! Unfortunately, our day had just begun. Nina started to complain that she was starving. This time, I used my previous trick and insisted that she eat some butter toast before I even considered getting her another snack. She protested at first but then gave in!!! With some food in her belly she wasn't as beastly and could think clearer. She thunk and thunk and eventually decided she wanted vanilla yogurt and granola. So, once she was nice and comfy and almost out, I raced to VonsMcDonalds and pick up some fries and chicken nuggets. Boy, would I ever be happy I had done that!!!

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