Sunday, September 26, 2010

Day 35

Tuesday September 21, 2010

Nina woke up early this morning, 7am to be precise, and asked for two things. First, she said she wanted Adelae (her cousin) and wanted to know when Adelae could come for a sleep-over. She had been saying that she missed Adelae for a while now but now she wanted her. The tone in her voice made it clear to me that she needed Adelae. Aside from Teddy, no one can bring happiness to Nina like Adelae can! I knew what I needed to do. Second, Nina said she wanted to go shopping! This was going to be a good day!

As I scurried around getting our things ready, an idea began to emerge. For the past couple of weeks Nina and I had been doing artwork together. We had been painting a ton of canvas' with her hand prints and giving them as gifts. I knew our family members and friends would love them. I had also been trying to collect as much video and photos of Nina and especially Nina and Teddy. But I hadn't really been able to think of something truly special that Nina could do for Teddy...that is until now.

I want to make it very clear that my hope is for Nina to be healed. Even when I am not actually physically producing the prayers for healing and a miracle, each beat of my heart, each neuron that fires in my very own brain is reaching toward Heaven in a constant prayer. God does not need me to mutter a single word. He created me and knows how every molecule that comprises my being is begging, pleading, believing that this miracle can happen if that is His purpose. With that being said, I know that there are people in my life that think that I am submitting to weakness of faith by simply acknowledging that there are two distinct paths to this journey. Let me make myself faith has never been more real to me, more concrete, more palatable, more alive. I do believe in miracles....God has already given me two, my son and daughter. But as I have said from the beginning of this journey, I cannot be blind to the fact that Nina is gravely ill and that I must do everything to prepare her brother for the possibility of a lifetime without her.

Consequently, this idea began to grow in my mind. What if I took this time with Nina and had her choose gifts for Teddy that he could get at every birthday and for important milestones, like high school and college graduation, getting married, etc. As I assembled Nina's meal for treatment, a plan began to form. I would shoot for collecting 50 gifts (for birthdays and milestones) and have Nina either take a photo or video with the gift so she could send him a little message. This way, for at least a couple of decades Teddy could always get a gift from his sister and know that even from Heaven she was thinking about him. I emailed some friends and family members to get their opinion. Some were overwhelmed by the thought (I do recognize that it is a bit morbid right now but could be such a blessing in the future) and others completely excited....nonetheless everyone agreed that it was a good idea. I was happy to have a project and I knew Nina would love to shop for her brother.

After she woke up Nina dictated that she wanted me to take rice crispie cereal for her after-treatment meal. While we drove to the Cancer Center she added that she would also like to get sugar donuts (as if there is any other kind???). Nina has always been a child that knows what she wants. I really do admire that about her, now more than ever! What I admire most is that she doesn't fear telling us what she wants, even when she probably knows the answer will be "no". I want to be more like Nina and ask for the things I want and the things I need. Too bad I'm not a cute 5 and 3/4 year old cherub :)

For the first time since starting radiation, Nina did not want to watch a Tinkerbell movie. Instead she chose Sponge Bob. I have to confess that the stupid show is beginning to grow on me, particularly Patrick :) I guess anything is capable of "growing on a person" if you're exposed to it enough....can any one say habituation??? We watched Sponge Bob and got through treatment and recovery smoothly. By this point, all of the anesthesiologists have obviously talked to each other about our case because everyone (regardless of whether it is their first time with us or not) follows our protocol flawlessly. It is a wonderful thing to be so supported!

After Nina finished her rice crispie cereal, she turned her chubby face (so puffy from the steroids), smiled and said, "I want to have a Taco Bell picnic at the beach!" Man on man was this going to be a great day or what! We got dressed and went on our first assignment: Donuts! The Donut Diva needed a sugar donut so off we went. We went to Spudnuts where she was awe struck by the myriad of choices. It was amazing to see her move around, talk, smile, and interact with people. I felt like we were getting our Nina back and I praised God for every second of it!

After Spudnuts, we went to Macys and did a little shopping. Nina picked a few items for Teddy: a blanket, some beach towels, a wallet, a silver platter (wedding gift) for "crabby patties". It was so much fun. The best part was when I was trying to pay for the wallet and couldn't find my id. Nina was sitting her in stroller watching me fumble around in my purse. I heard her sigh and then she said, "Mama...hurry up and concentrate!" The two clerks immediately burst into laughter. They asked her how old she was and she said 5 with the biggest grin possible. What a stinker! 5 year old scolding me and reminding me to CONCENTRATE!!

What was perfect about my idea this morning is that it will be Teddy's birthday in a couple of weeks so collecting all of these gifts won't be something totally weird for Nina. As we walked around the Brookstone store, Nina spotted an aquarium with tiny African water frogs in it. She turned to me and said, "Teddy would like this." She was right. He would love it. I asked her if she thought we should get him an early birthday present and she nodded affirmatively. Nina had always been a giver. It was breathtaking to see that even when she didn't feel well she thought of others, especially her brother.

We bought the froggies and made our way to Taco Bell. Unfortunately it wasn't the most beautiful of Santa Barbara days. It was cloudy and overcast but it didn't put a damper on our plans. We picked up T-Bell and off to Goleta Beach we went. The beach was practically empty. It was nice to be alone with the crashing waves and hundreds of on-looking seagulls :) We reminisced about funny beach stories. Nina is really enjoying hearing stories about herself as a baby and hearing funny stories about our family adventures. It is particularly sweet to hear her try to retell them to others! I am always surprised by just how much detail she actually remembers!

After our picnic, we went home and joined daddy and Teddy. Teddy had a play date and homework to do. Nina lounged on the bed in the living room. She had a very busy day, probably the most active in weeks. But she didn't complain or cry. She just said she wanted to rest and watch some movies. Thank goodness for Netflix streaming! As Nina relaxed with some videos I ran some errands. There never seems to be enough time in the day to accomplish every thing I need to do. But then again, there actually is little I really need to do!!! What I need to do is spend time with our kids...everything else can wait!

After dinner, Nina gave Teddy his froggies. I have realized that Nina cannot keep secrets. As soon as Teddy came home, she spilled the beans. He was so excited and kept telling Nina what a wonderful sister she was. Nina beamed with pride! She vacillated between naming her frog Sam and Sally, while Teddy named his Cody. They played and talked about the frogs for almost an hour. Todd and I loved to see them together! Nothing makes us happier or brings us more joy than seeing our two children love each other!

Taco Bell picnic at Goleta Beach...Yum!

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