Friday, December 17, 2010

Day 91

Tuesday November 16, 2010

Nina wanted to go shopping again today, but this time she wanted to go shopping for Christmas ornaments! What a delight to mama's ears. I love Christmas!! Nina loves Christmas even more!! Each year, we spend time together shopping, decorating, making cookies, listening to music, and wrapping gifts. Nina and I have so much fun at Christmas! Even when she wast tiny, like 2 years old, she would go from store to store with me and shop for gifts. The clerks would always be amazed at how well behaved she was! This year was no exception. We went from store to store and she picked beautiful ornaments (some for this year and others to give to Teddy in the future!).

I cannot say anything but good things about today. We hung out, ate at Panda, picked up Teddy, did homework, watched Wizards of Waverly Place (an emerging favorite with the kids.....Todd is just relieved it's not Suite Life on Deck....I enjoy them all :) but then again I am a dork!)....we simply had a good day. While Todd read Nina a story, I put Teddy to bed. He had spent too many days sleeping with Todd and I was determined to get his routines going again, which included sleeping in his own bed. His room was perfect so there were no more excuses. He fussed a tiny bit (I had actually braced myself for WWIII ) but actually did super well. We had returned to sleeping routines last night and he woke up super proud of  himself! I reminded him how proud we all were! He gave me a huge kiss goodnight and we read a book before it was time for la-la land :)

After Teddy fell asleep, Todd went to bed himself. I cuddled with Nina for a bit and watched her sleep peacefully. All of the sudden, my heart felt like it was going to explode! I could barely breathe!!! I do not know what made me feel this way. All I know is that I got completely overwhelmed with sadness. For almost 6 weeks Nina has done amazing! She is so strong, so communicative, so "almost" herself. I find myself being so happy and thankful for how well she is doing that I forget....I forget.....I forget....

I literally felt the room caving in all around me! I touched her feet and kissed them. I started to cry!!! All I could think of was that I didn't want to lose her....then I started thinking about how if I had to lose her how fearful I was that I'd forget her....forget how she sounded, how she felt, how she smelled!!!! I felt like I was going to vomit!!! All I could think of was what the doctors have told us...that it is common for these kids to get very strong when they respond to treatment but then to fall off a cliff at the end, that it isn't a slow decline, but a drop into an black abyss!!! I just cried, I quietly cried because I don't want my precious daughter to fall into a dark abyss....I don't want her to fall off a cliff!!! I want her to be healed!!!! I prayed!!! I dropped to my knees and I begged!!!! I would/will do anything for Nina's life to be spared!!!!!!! I would give mine up in a it wouldn't even take a second....I would give up my life for hers in a instant!!!!!

Then the quiet cries began to get louder. I tried to muffle them but I couldn' I went outside!!! I did what I do best...ran into the dark to cry by myself.....


  1. no words...just want to let you know we're following your story and praying. I so appreciated the time Todd and I had last week.

    Sending our love,
    Rolf and Trish

  2. Hey,
    I just heard about your post from Brett Merrick's FB post. My 3yr old daughter Maeve has been praying for Daisy Love for months now. My heart breaks reading your blog, and words fail. I'll be introducing Nina to the family tonight during our devotion time. It doesn't feel like enough, but know that we will be praying for you every day. Asking God to do what is impossible for men, to heal your Nina completely.


    The Kitchens Family in Los Angeles

  3. Hello, I am here from our Pastors daughters blog Pray for Daisy, as a mother I can feel every part of your heart and hope for your daughter, we will be praying for your precious little girl and your family when we pray for Daisy Love.
    Thank you for sharing your heart on this blog.
    The Lord bless and keep you,
    with Love,
    dale and julia