Thursday, October 7, 2010

Day 42

Tuesday September 28, 2010

What a relief! Nina was happy this morning! My entire world now hangs on her mood, her comfort. If she is happy then I am happy. If she is in pain, then I am in pain. With Adelae being here Nina is the happiest she has been since August 19th. She looks at Addie and beams. When they laugh together she radiates. Adelae's warmth and attentiveness is breathtaking. I watched her this morning as she gently stroked Nina's hair while Nina slept peacefully. I was memorized by the beauty and loving spirit of this incredible 11 year old girl.  How could someone so young love so intensely, so purely, so selflessly??  Nina stirred and opened her eyes. Addie smiled at her and Nina returned the most brilliant one. I felt like I was watching something sacred.

Cindy was delighted to see that our honey-girl was happy again. Nina didn't fuss or cry. She sat nicely in her stroller and she and Addie watched the videos I had recorded the previous night of them taking photos on Photo Booth. The girls giggled. The anesthesiologist stopped by and Nina stoically composed herself. Addie tickled her arms reassuringly.

Before long we were off to the hallway. I had explained to Addie what would happen once we got there. I have always known that Adelae was a collected and calm child but I could have never imagined the strength and insight that the darling girl had. Without me saying a word, Addie followed my lead. As soon as we stopped the stroller in the hallway, she knelt right by my side and watched me talk to Nina. She quietly pulled Nina's blanket down just a smidge so that Nina's left arm was exposed a bit. She proceeded to gently tickle Nina's arm as I talked to Nina about our plans for the day. We talked about how we were going to go look for a wig for Adelae's Silvermist fairy costume. Within 30 seconds Nina started saying, "Wiggly!" I looked at Addie and reassured her without saying a word that everything was alright. Nina began to nod off. She closed her eyes for a few seconds then reopened them stating, "Wiggly". Addie smiled at me. After another 15 seconds, Nina was out. I thanked the doctor and Addie and I were off to the cafe to pick up breakfast.

As we walked to the cafe, I asked Addie how she was feeling. She said it had been scary at first to see Nina's eyes close and hear her say "wiggly". Adelae then proceeded to ask me some of the most amazing questions ever: she asked why had Nina said "wiggly" and if she had come up with that word on her own, she asked what happened when they put her on the table, if Nina was scared, if it hurt to be sedated, how long the treatment was, where did they keep the mask, did Nina ever see the mask, how did they keep her breathing with the mask on, did her head hurt afterwards, etc. If felt good to answer the questions and ensure that Addie was comfortable. I explained that it wasn't necessary for her to go into the hallway with us but Adelae insisted that she wasn't scared anymore and wanted to be there with Nina. As we crossed the street, the sunshine crept out from behind some clouds and illuminated Adelae's perfect satin skin. Her eyes were the color of the sky. Her hair was golden and flowing along with the soft breeze. I felt like I was starring at an angel. Adelae was an angel. She was a miracle in Nina's life and I quietly thanked God for her. Addie must have felt me starring at her because she looked up at me and smiled shyly. I wrapped my arms around her and kissed the top of her head.

Inside the cafe we ordered breakfast. As we were paying a young hospital employee started to play around with the cashier, teasing her about how the food was so good but the service mediocre. I smiled at him and politely disagreed, which led to a minute-long hysterical banter. Addie stood there laughing, completely embarrassed. I told the young man and the cashier that my niece was constantly being embarrassed by my antics with perfect strangers, to which the hospital employee explained to Addie that, "Your aunts a cool lady so I think she should get your food for free!" Addie laughed, totally embarrassed. I'm not sure what was more embarrassing, my behavior or the fact that a cute guy had talked to her!  She looked at me with total disapproval. I loved it and giggled. She then redirected me like an adult redirects a misbehaving child :) She reminded me she wanted a breakfast sandwich. I got Nina a yogurt parfait and toast.

Nina recovered incredibly quickly. She was motivated to spend time with Adelae. Once we were finished with breakfast and Cindy gave us the green light, we loaded up in the minivan and made our way to the wig shop on State Street. Who knew that there was vibrant clientele in Santa Barbara that purchased wigs! Inside the store, Addie tried on a wig that was absolutely hysterical. Nina couldn't stop laughing. I thought it was fine but Addie and Nina proclaimed it made her look like a troll. I decided for once I couldn't be cheap so I purchased the more expensive wig. The girls were delighted. The best part was that we also found a wig for Todd's fairy costume :)

Once were were done with the wig shop, we decided to walk a few blocks to the Pretzel Store and get a treat. Addie also needed a dress for Eileen's wedding so I thought we could go to Macy's. Nina approved and proclaimed that it was "shopping day"! As we walked down State Street, the girls laughed and chatted with me. We talked about the different window displays and what items they were looking for. We spent a lot of time planning our Halloween extravaganza. Nina was so happy! Adelae was so happy! I was so happy! I looked at Addie and Nina and my heart began to fly. For the first time since Nina's diagnosis I felt exuberance for life. Walking down probably one of the most beautiful streets in America with my two most favorite little girls in the world, I felt like I could burst into song. But I didn't!

Just as quickly as I had reached my high, I came plummeting down like a ton of bricks. Addie and Nina talked and I starred at them, all the while pushing Nina's stroller. All of the sudden, I was overcome with intense pain, like someone had repeatedly punched me in the stomach with a crow bar. My happiness was replaced with longing. I found myself imagining myself with with Addie and Nina twenty years from now. The girls would be in their mid-twenties and early thirties and I would be in my mid-fifties. We'd be walking down State Street. I would have treated them to lunch at Tupelo Junction where we would have sipped on mint juleps and eaten their perfect fried chicken salad. Then I would have taken them on a shopping spree at Nordie's and we would have ended our afternoon at Pierre LaFond and Wendy Foster having coffee and dessert.

But the reality was that my fantasy might never come true. I felt so sad. This time it wasn't a sadness that made me want to vomit. I actually would prefer that kind of sadness. It was a sadness that made me feel empty, like a huge, cavernous chamber had been ripped into my chest without warning. I wanted to cry but knew it wasn't fair to the girls. So I did what I have always done best....shoved every ounce of feeling into a deep dark box in my soul. We were having a perfect day and I could not, would not, ruin it with my woes. Today was not about me. It was about Addie and Nina! I commanded myself to smile...and I did!

The rest of the afternoon was a delight, with the exception of small a detour to the upstairs bath. Adelae was delighted to find that her costume had arrived. She looked amazing with it on and with the wig on. When it was time to pick up Teddy, she put the wig on. Teddy totally believed her when she explained that she'd gotten her hair cut and colored. He looked confused but accepted her truth. It wasn't until about 5pm that Addie finally told Teddy she had tricked him and was wearing a wig. Nina laughed at all of these exchanges of course.

After dinner, I helped Addie with her Spanish homework. In fact, all of Addie's homework with the exception of language arts was in Spanish. Adelae had been in a Spanish immersion program since kindergarten and was  a fluent Spanish speaker, writer, and reader. Nonetheless, she still wanted help and it was my pleasure to be able to help her. No one ever had to monitor Adelae when it came to homework and school work. She loved school and learning was her life!

As the kids had a snack of sliced apples and rise crispie cereal, I finished off my emailing. When no one was noticing, I made my way to the upstairs bathroom and closed the doors behind me. I turned on the water so they'd think I was showering. Then I sat on the ground and cried! I cried because I was so thankful Adelae was here to bring Nina such joy but I also cried because I feared that I would never get to see Nina being a perfectly loving 11 year old. I cried for every milestone I might not ever get a chance to participate in! I cried for everything.

1 comment:

  1. Rosy, I cried with you, friend! I don't understand your heart-break, but I understand looking at your child's future with awe and wonder! I pray for peace for you today and continue to pray for the miracle we all so desperately want for Nina...and for you!!