Sunday, September 26, 2010

Day 34

Max & Nina

Monday September 20, 2010

Today our radiation appointment wasn't until 12:30pm. It is a nightmare when we can't have a morning appointment. To try and minimize the starvation craze, I moved our midnight meal to 5am. We had a full on feast of rice crispy cereal, vanilla yogurt, toast with home-made strawberry jam, and grapes. Nina ate a ton and asked for seconds on the toast. As I wiped her face she said, "Jam is good!" I love how she makes the most wonderful of proclamations. Jam is good! We should all have jam on toast at 5am more often!

I tried to keep her up as long as possible so that she'd sleep in. She did sleep in...until 9am. Then I had 3 hours to fill before we could even consider getting into the car. On previous late start days, I had tried to distract Nina by taking her out for a drive or a stroll through town. The problem is that there are reminders of food everywhere and she starts to panic and get really angry! I never realized just how much advertising for food there is until my food-obsessed daughter pointed it out to me!

So...this time I decided we'd camp out in bed and watch a movie. This shouldn't be too hard, how much food can there be in a movie?? Well...a ton...if it's Ponyo. That's what Nina selected...Ponyo. Ponyo is a darling movie but holy smoke is there a ton of food in it! Every thing looked really good...especially the ham sandwich (Nina already is a big fan of pork) and the noddles. She turned to me and said, "I want to have a ham sandwich and noddles too!" Great! I had no ham at home and no Japanese noddles. Go figure! I had spent a bunch of time the previous night packing up carrots, yogurt, cereal, and a fruit salad but now that was out and ham and noddles were in! Darn it! Maybe she'd change her mind :) A mother can always dream!

After Ponyo was over, Nina turned to me and and said, "I want ham sandwich and noddles." Okay, ham sandwich and noddles it was. We got dressed and drove over to a local Asian market where we stocked up on noddles and bought two authentic ceramic noddle bowls just like in Ponyo. Nina looked at me and through her chipmunk cheeks said, "This is going to be good!" We payed and strolled out of the store. We hadn't even taken 10 steps when Nina proceeded to grill me about not forgetting the ham, "Mama I want a ham sandwich after Cindy." Everything Monday-Friday was about After Cindy :)
We strolled another 50 feet and bought some delicious ham at South Coast Deli. As I loaded Nina into her car seat, she asked if she could have a bite of her ham sandwich. I smiled as lovingly as possible and said no. She looked down and mumbled, "After Cindy." I laughed and kissed her forehead, "Yes, after Cindy!"

As we drove to the Cancer Center, I turned on the radio so we could listen to some music. Nina loves music and has always loved to sing and dance. We listened to a couple of songs without much fanfare. Then it happened....we found our theme song!!! I had never heard it, but as soon as it came on Nina proclaimed, "I love this song!" and started to dance. Right then and there I knew we had found our theme song. The song was "The Sound of Sunshine" by Michael Franti & Spearhead. Nina just giggled and danced in her car seat. I looked at her through my rear view mirror and the largest lump grew in my throat. She was the sound of sunshine personified! Everything about her, even in illness, was sunshine!

At the Cancer Center, Nina eagerly told Cindy all about her plans to have a ham sandwich and noddles. Every morning when we enter through the front lobby, the secretaries asked Nina what is in store for breakfast and lunch. Every single staff member in that center had come to know how important Nina's meals were. It was a source of pleasure for everyone because they knew how it delighted her. She was impacting everyone around her....even virtual strangers!

Treatment went incredibly smooth. For the first time ever, Nina asked to go to the "other room". When she said this, she was asking to be taken to the hallway directly outside of the radiation room where the anesthesiologist meets us and then gives her the sedative. Cindy turned to me and smiled. It warmed both of our hearts for Nina to say that. Although she wasn't able to recall what happened in the actual radiation room because of the amnesic effects of the sedation, she had figured out that when we strolled her there it meant food was closer :) She is so smart and incredibly brave!! Like her brother said, she is the bravest girl in the world!

By the time we were done with treatment, it was almost 3pm. Nina declared that we needed apples and baby carrots so we said goodbye to Cindy and went to Vons. I now understand why my initial shopping trips to Vons after the diagnosis were so hard for me. Kind of strange that a grocery store would cause such deep grief but it wasn't the actual store, it was all of the time Nina I had spent there together. Immediately upon her birth if I had a choice of children to take grocery shopping I would always choose Nina because she was much easier. As Teddy got older and started preschool, Nina and I would be on our own and do all the meal planning and shopping together. The last two years (since Teddy started elementary school) I would pick up Nina from preschool at 1pm and then we'd either go home and prep that night's dinner or we'd go to Vons to pick up any missing supplies. Grocery shopping was one of the most prevalent routines in my life with wonder it was hard to do on my own or even imagine having to do it forever without her company.

On this Vons trip, I was happy and wanted to relish it! We meandered from aisle to aisle. She would eye something desirable and request that I purchase it. I gladly obliged! We left with baby carrots, apples, celery, Cheetos, Cesar salad, wheat thins, and rice crispie cereal. Nina was very happy so consequently I was happy too! Her happiness reminded me of something a very wise man once said to me, As a parent you are as happy as your saddest child. The man who told me this has a child with autism and although at the time I remember being empathetic to what he meant I didn't truly understand the depth, magnitude and reality of this statement until now. He was so right!! Since August 19th this was my truth!

We went home and had a quiet dinner with Todd and Teddy. It was so wonderful to have so many people taking care of us and bringing us dinner. This simple act alleviated so much time and stress out of my day. It allows us to concentrate on Nina and Teddy and we are so grateful! Our evening ended with Nina's best request yet...chocolate milkshakes! Todd made the creamiest, yummiest, most chocolaty milkshakes, topped off with whipped cream of course and the four of us sat on the living room mattress as happy as our saddest child, who for tonight was very happy!! We were all very happy and thanked God for it!

Purrfect Buddies: Teddy, Nina & Max!

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