Monday, January 31, 2011

Day 146

Monday January 10, 2010

To help relieve some of the stress in my life, Larisa, Sharon and Crystal took it upon themselves to create a support schedule for me during the mornings. During the weeks we won't have anyone staying with us, the girls rotate daily who comes at 8am to hang out with Nina while I take Teddy to school. I cannot express the immense help and relief this is! Like clockwork, someone knocks on the sliding screen door at 8am! Sometimes Nina is up and sometimes she is still asleep.

Larisa came this morning and Nina was up. Nina was so happy to see Larisa, so happy that it surprised Larisa a bit :) They talked and caught up while I was gone. Nina has been in love with Larisa lately and Larisa is reveling in it! Larisa clearly understands that when the queen showers her love on you, you better soak it up because you never know when she'll declare Off With Her Head! 

When I returned they were playing Wii and Nina was beating Larisa again :) Eventually, Nina got tired and fell asleep giving Larisa and I an opportunity to catch up. Larisa hung out for quite a while hoping that Nina would wake up. She feared that Nina would be pissed off if she woke up and found Larisa had left. An hour later, Nina had yet to wake up. Before Larisa left, she wrote Nina a note telling her that she had to leave because she needed to go to school and that she'd return to visit later. When Nina woke up, the first thing she said was, "Where's Rarisa?" (that's how she pronounces Larisa's name!). I explained that she had to leave but that she had left her a note. I gave Nina the notebook where Larisa had written the note and Nina....chucked it across the living room in fury! She was livid that Larisa had left! I texted Larisa to jest that she'd been right in her assessment of Nina's response but Larisa didn't find it humours...she was super sad that she couldn't have stayed! I reassured her we'd have another playdate so that the two of them could make up ;)

Shortly after her Larisa tantrum, I told Nina it was time to get ready for the doctor's appointment. Immediately she asked if they were going to put the pokey thing in her booby! My precious baby! I've discovered that it makes matters worse if I don't tell her where we are going. Unfortunately, telling her ahead of time also means that she cries on the ride over; at least it isn't as intense by the time we arrive because she has slightly exhausted herself and more so because we have made a plan about what we're  going to do after the appointment. Today, as I drove and Nina sobbed, she decided she wanted to have a Hello Kitty movie night with Larisa. Larisa totally agreed and the prospect of a girl's night slightly (slightly I say) relieved Nina a bit!

On my way over, my friend Mario called to see if we already had company for today's treatment. In fact we didn't and to be honest....I was happy to have the company. Each treatment has gotten a bit harder to do, emotionally for me that is. A part of me feels like there is a count down haunting me and that each time we have a treatment we are also getting closer to the decent of that countdown. I know it sounds completely strange! I am perfectly capable of doing these treatments on my own but the company is so comforting.

The entire oncology office knew Nina had arrived before we had even entered the building. They could hear her from the parking lot :(  Unfortunately, it took a bit to access her because she has so much tissue in her chest now. Eventually, she got accessed and she stopped crying. The crying is totally out of fear! As soon as that needle is in, she is fine. It is the anticipation and fear that works her into a pretzel...sweet honey!! While Mario entertained Nina by letting her buy a zillion new games on my iphone (when my phone dies I'm holding him responsible!), I caught up with Dr. Greenfield. We discussed how to apply the steroids in a way that would recapture her symptoms while minimizing the side effects we so deplore. Dr. Greenfield is simply a kind and attentive man and I always leave feeling more secure (and heard!) after speaking with him.

Before Nina knew it, the treatment was done and we were headed back home. Prior to picking up Teddy, we quickly rented a few new movies, including two wonderful Hello Kitty ones. While Teddy played outside, Nina had a snack and colored in her new coloring books. I felt simultaneously exhausted (from her crying) and reinvigorated (from her recovery!). I sliced her some more apples and kissed the top of her head, all the while thanking God for her indelible strength! Nina is a bastion of strength! I wish I could be like her!!!



Tonight, homework was not as successful. Teddy was pretty annoyed with having to do anything academic and especially because tutoring was resuming. Poor Erik had to take the brunt of the madness. Eventually, Teddy settled down and they had a productive session.



Sunday, January 30, 2011

Day 145

Sunday January 9, 2011



Nina woke up at 3am and immediately scolded me, "Mama you gave me too much Avatar!" I wanted to burst into laughter but was afraid that she'd send me to the moon :) What she meant to say was that I had given her too much Atavan. She is such a smart cookie. She listens to everything we say and remembers it. I proceeded to tickle her back until she fell asleep again. About 4 hours later I woke up. I couldn't sleep any longer so I checked my email and texts, as I always do. Eventually I snuck into the kitchen and made myself a hot cup of coffee. Nothing tastes better in the morning then fresh coffee. I still don't understand how adults can get through their day without coffee! This is one vice that I would have a terribly difficult time letting go.

Around 9am, I heard Teddy stirring so I went upstairs. I crawled up into his bed and he instantaneously wrapped his skinny little legs around me and nuzzled his nose into the crook of my neck. I kissed his forehead and wish him a good morning. Teddy has always had a spectacular way of using his words. He has always been precocious with his observations and comments. In the past few months, his ability to share his emotions through conversation has blossomed beyond my own understanding. It is simply a gift that God has given him and I am so thankful that I've been able to help him cultivate it! As we cuddled on his loft bed, he tightened his precious arms around my neck and said, "If I had a camera, I would take a picture straight away of us cuddling first thing in the morning!" I laughed, kissed the bridge of his nose, and asked, "Teddy why are you so wonderful?" to which he replied, "You'll get used to it!" What a character! We snuggled for another 10 minutes before both of our tummies summoned us downstairs.

After breakfast, Teddy played with legos while Nina, Eileen and I hung out in the living room. Nina has been excited about her birthday for months now! Over the past week, her excitement has grown fervently as she and Eileen have talked about all the details for her party. Nina decided she wants to have a "Patrick and Spongebob" party with Patrick as the main theme :) Yahoo...a Patrick party!!! The two of them spent time perusing the internet for the perfect cake and they had found it! It is a Patrick cake...the background made out of icing and Patrick and the flowers made out of fondant! I always make the kid's birthday cakes but I've never used fondant so this was going to be a fun challenge!

We are so blessed to have so many people who love us! Nina's friend from preschool, Justine, was celebrating her birthday today. Nicole (my friend and Justine's mom) recognized that the big group party might be too daunting for Nina so she asked if Justine, Samantha and Sydney (Nina's three gal-pals from preschool) could come by our place after the party to open some presents and share cake. What a delight!!

Hugs from Nicholas

Look at my Patrick cake!


Scooters with Sydney


Rolling out the fondant


Sydney and Nina carefully decorating the flowers



When the girls arrived, Nina was actually napping. I was a bit worried at first that she would not be happy to see them, especially since she was particularly tired today. This had been a very busy week for Nina and the level of activity we had engaged in had begun to take its toll on her; she was tired! But after Nicholas (Samantha's little brother) crawled up and hugged Nina, her mood perked up and she had a magnificent playdate wit her good friends. She was so happy!!! The happiest we'd seen her with friends in a super long time! She talked and talked and talked. She was especially happy to talk about her birthday plans and her friends listened attentively. She was so motivated that she even agreed to go outside and ride on her new scooters!! I was tickled beyond belief!!! The power of motivation was fully in display and I was so thankful my friend had thought of this idea! Nina needed to feel loved by her friends. She avoided them because she doesn't feel well about her appearance but being with them invigorated her with new life! God gives us friends to brighten and share our lives with because they help restore our spirit. Nina and her friends were perfect examples of that!

About halfway through the playdate, Nina asked if we could practice making the cake for her birthday party. I thought that was a brilliant sit-down activity the girls could do together so I quickly ran to Michael's and picked up all the necessary materials. Needless to say, the girls had a blast playing with the fondant! I had to make Patrick free-hand but he doesn't look too terrible. I will most definitely have to practice a ton more before the actually party!

Nina had so much fun that before Sydney left she asked if they could have another playdate! This made me and Beth (Sydney's mom) beyond excited! Eileen commented on how beautiful the playdate had gone. Beautiful was the perfect adjective! It was beautiful to see Nina joyful with her friends!!!!

Before long, it was time for my personal, week-long playdate with Eileen to come to an end. As her departure time approached, trepidation grew in my spirit. We got the kids and Todd settled with dinner and then snuck out for appetizers ourselves. We went to the Boat House on Hendry's Beach (where Eileen and Dave had gotten married here in SB) and watched the sun set. Through tears and bites of shrimp cocktail and crab cakes, we held each others hands. Life is bitter-sweet. Actually, it's mainly bitter but the spots of sweetness are so precious that they feed our souls and carry us through the next round of bitterness.

Finally, it was time to say goodbye. The kids hugged Eileen tightly. Teddy told her to hurry up and come back! Eileen and I drove to the airport, plotting our next time together. As I hugged her goodbye, my own heart plunged! I reminded her how thankful I was and how much I loved her!! She did the same and then she walked away. As I drove off, a flood of tears came pouring out. With Eileen here my days, especially my nights, were easier to tolerate. Goodness how I love her and appreciate her company. With her here, time went by with more comfort. This was particularly true in the evenings. I always feel desperately alone in the evenings!! But when Eileen is here, we can laugh and cry and even if we don't say a word we feel the companionship. Without her, I was all alone again. I ached! I loved my playdates with my precious friend and awaited for my next one with bated breath.

Thankfully Teddy was pretty exhausted so he fell asleep with ease. Nina was an entire other story. She tossed and turned and just couldn't find a comfy enough spot to fall asleep. At 11 pm, as Todd tickled her back, Nina looked up at me, precious hazel eyes penetrating my soul, and said as she pointed to her port, "I'm not your regular daughter....I have this thingie and had to go to the wiggly room." I instantly kissed her lips and told her she was my perfect Nina and that she was the bravest, strongest, smartest and most beautiful girl in the world! She smirked at me. I smiled back but inside I was dying!

Day 144

Saturday January 8, 2011






On Saturdays downtown Santa Barbara hosts the best farmer's market. Eileen suggested we go and Nina perked up immediately. She loves the farmer's market because it is filled with "new" food :) She immediately asked if we could buy butter and bread! Eileen and I both laughed as said of course! On a number of our farmer's market excursions with Eileen we have bought the most amazing fresh butter and then gone to Our Daily Bread to eat it with fresh rolls and yummy juice and coffee! Delicious!!! While the girls went to the farmer's market, Teddy hung out with dad and got prepared for the Boy Scouts Pine Wood Derby!

Without much ado, we arrived at the farmer's market. As we strolled up and down each aisle, Nina would point out where she'd want to go and which fruit she wanted to taste or not :) She reminded us that Eileen bought flowers last time (totally true) and that we shouldn't forget the butter (that's my girl!). On our way to the flowers, Nina found some succulents that she simply had to have. I had her pay and she did ever so proudly. Then we got Eileen her flowers and found our butter!!!


That's the plant I want Mama!



Paying....what a big girl!


Being Goofy with Eileen


Happily watching the man make her snow man balloon ;)

We felt very European, sitting outside Our Daily Bread, sipping our coffee and eating our bread and butter and fresh pastries! Nina pretty much preferred butter and a tiny bit of bread :) Then again, she is half Portuguese and we love our butter! All that was missing was some sort of pork product (preferably bacon) and Vovo (my dad) would have been burst into song :)

After our morning excursion, we returned home and spent some time hanging out with my dear friend Kelly. She loved Teddy's room and was so happy to hear how much he delighted in it! Eventually, Nina fell asleep for a short nap! With a belly full of butter what more could we expect.

After her nap, Nina and Eileen finished working on the tile magnets they had started the day before. Eileen had given this craft to Nina for Christmas and the two had a blast painting. My favorite tile that Nina made was of a tornado. Neither Eileen and I would have guessed it was a tornado until Nina told us. It made it all the more delightful; her creativity in full bloom.

My precious friend Crystal came to visit with her mom and sister. Prior to Nina's illness I had met Crystal's mom Mina but during this journey she has continuously reached out in love to me. It was so nice to have them all spend time with Nina. Of course, I should post a sign stating that if folks want a hug from Nina they need to steal it :) You just need to sweep in and quickly give it because if you ask the answer is always NO from the Queen :)






After Crystal's visit, Nina, Eileen and Kelly went to see Teddy race at the Pinewood Derby. He was so proud. I love him in that uniform....just want to gobble him up but I resisted since that wouldn't be cool to do in front of his friends. Nina was surprisingly happy to be out. Normally, she resists going to big group functions but she was super excited to cheer for Teddy and kept asking, "Is Teddy winning?" Twice she willingly walked to the snack table and got a couple of tangerines. She must have eaten 5 :) She even said hello to folks that came to greet us. Teddy was particularly vigilant and in between races would come  to check on Nina; precious boy! I was relieved that Nina felt so confident, especially as people would do the "quick-see" where they'd look at Nina and turn away with such sad and shocked faces. Frankly, it pissed me off!!! I wish people, especially adults, would just force themselves to smile and look "normal"!! Yes she looks different, yes she can't walk well but damn it just control your facial expressions! I understand why for the most part she is hesitant to go out in public. I also understand that people aren't trying to be mean, just lack social awareness! Irrespective still pissed me off!!



Teddy and his #8 racer



Setting up for the race


Teddy did well in his races and was happily interacting with his buddies. After his final race, we returned home while the guys stayed for the awards ceremony. About an hour later Todd texted that the computer with all of the race times had crashed!! Eileen, Kelly and I just died from laughter because this meant that Todd would be stuck there longer. He had already complained about going and now would have to be tortured just a bit more!


Foot massages....$1 please!

Before long, the guys returned home. Teddy won a trophy for 3rd place. He was very proud and Nina very impressed. She proclaimed that she wanted to win a trophy and Teddy proceeded to tell her all the ways in which she could :) After dinner, Teddy opened up  his massage shop. He is such a little entrepreneur :) He charges $1 for foot and back rubs and I must admit, he does a fabulous job!!! I loved watching him cuddle with Eileen! Over the past couple of months his level of affection with others has skyrocketed. Eileen loves every bit of it! I can't blame her! I know I favor each hug, kiss and sweet nothing!

Peaceful slumber

Saturday, January 29, 2011

Day 143

Friday January 7, 2010

After I took Teddy to school, Nina surprised us by declaring it a shopping day! Eileen was ecstatic because she had just finished telling me that she wanted to return to Tiffany's and have Nina choose matching necklaces for me and her. What sweetness!

We made ourselves presentable and went to La Cumbre Mall. Nina looked like a seasoned jewelry shopper as she strolled by each case identifying necklaces and charms she liked and wanted to inspect more closely! It made me laugh to see my rascally daughter browse the rows of gorgeous necklaces and demand (with all politeness of course) to see specific ones with complete and total confidence ;)  The gentleman attending to us was utterly wonderful and super patient. In the end, Nina chose perfect necklaces! Of course she did :)




The walking Nina did at Tiffany's took its toll on Nina and by the time we returned to the car she was about to pass out. I dropped Eileen and Nina off at the house and went on my way to pick up Teddy. I waited for Teddy outside of the classroom. When he came out and saw me, he flashed me the biggest of smiles, "Hiya there mamacita!" It made my heart flutter to see him happy to see me! When he is happy I am on cloud nine!!!

We returned home and Teddy joined Cami and Katie outside. They were committed to building their "fort" under the trees by the front of our condo complex. Periodically I'd hear them in the garage searching for something. "This is the perfect one!" Teddy would declare with commanding authority :) He is such a funny kid and his imagination is astounding!

The rest of the evening was benign. Nina played Wii and beat us all! Teddy stayed outside until it was dark and it was time to eat dinner. During one of her Wii breaks (just enough of a reprieve for the losing adult to collect his or her dignity before the next beating!) Nina shouted for me to hurry up and take a picture of her and Max. I rushed over because normally Nina is annoyed at all of my photo taking. I quickly took the photo and then spent the next 3 minutes sending it to everyone I love!


Poor Max looks like he is being choked! What a good sport!


Today had been a simple day and I was grateful for that! Simplicity is a good thing!

Tired!

I am so tired!

My entire life has been defined by giving and I have always done it out of love. Now more than ever I am being called to give and I give every second of the day, even when all I want to do is crawl in bed and never come out. But crawling in bed and never coming out is not an option. I need to keep putting one foot in front of the other but I am so tired!!!

I am tired!!

I am tired!!!

I am tired!!!!!

Thursday, January 27, 2011

Day 142

Thursday January 6, 2011

Taking a tiny snooze mid-morning

Nina asked Eileen to take her shopping. She expressed that since Teddy had gone shopping for my birthday it was only fair that she'd get to go shopping too. So...shopping they went. I dropped off the girls and went to run a quick errand and pick up Teddy. Eileen texted back about 20 minutes later that they were ready :) Later on, she explained that Nina knew precisely what she wanted to get me and did not hesitate to make her purchases! She is such a funny girl! Eileen was amazed at what a good shopper Nina is. She was determined and succinct. Initially, she had chosen a number of potential earrings (apparently there was a hysterical pair of huge purple flower earrings that didn't make the final cut.....I got a feeling Eileen had hoped they had!). In addition, she had commanded Eileen to stop and back up when they passed the sales table with all of the Christmas pins. Nina chose a beautiful polar bear pin for me. She was positive I would love it and she was right!

After I picked up Nina and Eileen in front of Macy's, we returned home where I had an opportunity to open my gifts. I loved seeing the pride and happiness that emanated from Nina. As adults, we love bringing joy to others through gift giving (at least we should!). However, often we seem to forget that this a skill that needs to be modeled and shaped in children. Receiving gifts is lovely but what is more important (at least should be in my book) is giving. That is why I've always had my kids participate in buying gifts for others. It is a simple way of showing them that one of the greatest joys in life is blessing others. Furthermore, it's a useful way of helping children not be so ego centric ;)

Anyway, the following video is of me opening the gifts that Nina bought me. She bought me a lovely polar bear Christmas pin, two hilarious (totally loud and ever so Nina!) pairs of earrings, a holiday Spatula, and some cupcake decorating molds. Just like Teddy, she knows me so well! I love how tickled Nina is with my delight and appreciation of her gifts! It is as it should be! She is beaming because she understands she is bringing me joy! What a precious heart from Heaven!





Once all my gifts had been opened, I turned to Eileen and thanked her for taking Nina. Eileen is my precious sister who has given so much. As such, tonight was going to be big girl night out. We cleaned up the gift wrap, and Eileen played a game with Nina while I did homework with Teddy. In our family, we don't just have a birth"day" we have a birth"week" where we get to be the "boss". The kids LOVE this! As such, because I was the birthday girl, Teddy proclaimed that I had to have the best week ever. When I announced that it was homework time, he was about to launch into his litany of complaints but caught himself! I burst into laughter and he said, "It's your birthday week. You deserve me not companicking about homework! Come here beautiful girl....pucker up and give me some sugar!" I kid you not! That is what he said. I immediately wrote it down because I didn't want to forget! I had a really hard time not laughing or smiling each time I looked at him during the remainder of homework. I really don't understand where he comes up with this stuff. We don't have cable (sure he watches videos) and no one is modeling this kind of stuff for him....he is hysterically amazing and can work me like no one else :)

So...we finished homework without a hitch. He did however have a few choice words to say about tutoring, to which I added a slightly jabbing remark that it was my birthday-week and that I'd appreciate no complaining about tutoring :) He rolled his eyes and let out a  huge exhale! I'm sure he was thinking Man my mom is one pushy broad!


Shortly there after, Todd returned home and Eileen and I got the kids settled with baths (the queen is very particular about how her hair is washed :)....sweet girl!) and dinner. Then we were off. We went downtown to Blue Agave and had appetizers and just decompressed. We really hadn't had a chance to sit together and talk. Over chips and salsa and drinks, we laughed and cried, cried and laughed, and laughed and cried some more. It felt good to release a bit, to let it pour without restraint. After our round of appetizers, we met Larisa, Sharon and Crystal for dinner at Olio y Limone Pizzeria (most incredible restaurant!!!!) As I sat and shared a wonderful meal with these 5 extraordinary women, my heart filled with gratitude! I get so overwhelmed sometimes that I don't even know how or what to pray for. However, God knew that I needed these strong women in my life. I may not know how to pray for what I need (because I don't always know what I need) but I sure do know how to say a prayer of thankfulness without any hesitation. Perhaps that is more important!



Day 141

Wednesday January 5, 2011



Today was my birthday. I turned 34. How the hell did that happen? I swear it was just a moment ago that I was a cute 22 year old starting graduate school. Now....now I'm freaking buying anti-wrinkle tonics galore at Macy's with my friends hoping to fend off crow's feet and all sorts of other signs of wear and tear! Thank goodness my mother always insisted that I moisturize....I owe her my good skin :) But good genes and moisturizing can only go so far :(

All kidding aside, my mother has always had the best attitude about age. With women, there is the stereotype that we hate getting older and that after 29 we stop counting. For the most part, I'd venture to say that the stereotype fits. However, my mother always had an extremely healthy way of looking at aging. I vividly remember her saying (when her brothers or cousins teased her about getting older) that each birthday she celebrated was a gift from God, another year to be here on this earth with the people she cherished the most. The earliest I remember hearing her say this was when I was 10, which would make her 40. I grew up thinking that getting older was a blessing. I joke about being old at 34. I don't believe it. Nor do I wish I could stop time. Each year brings growth and wisdom, heartbreak and delight. I look back at who I was at 22 and even ten years ago at 24 and I am not the same person. That is the beauty of getting older. If we are open to it, we learn the myriad of lessons life has to teach us. The biggest lessons in my life have been to not live in fear and to be patient. I have come a long way but I have miles to go!

As I took Teddy to school, he gave me the biggest hug and kiss. He told me that he was so proud of me, that I was the bestest mom in the universe, and that he loved my kisses most of all! Boy does he know how to make a girl feel special or what!?!?

My birthday was lovely. Friends came by to visit. I had a fabulous CPK (California Pizza Kitchen) lunch and played a competitive round of Wii with friends....Nina beat us all :) While I picked up Teddy, Eileen and Nina made cupcakes for me. As Teddy and I walked to the car, he lamented that I was only getting two birthday presents. "Mama...you should get many more presents! You work so hard and take such good care of us....you need more than two presents...I just feel bad, that I'm not being a good son!" This boy is pure sweetness (I remind myself of this every evening when I want to scratch my eyes out during homework!). I reminded him how incredible he was and that he and Nina are my two greatest gifts. He rolled his eyes in the Geez, you're a mom...you're suppose to say that! Little does he know that I mean those word! He and Nina are my greatest gifts in life!




After picking up Teddy from school, Eileen, the kids, and I went for a walk on Goleta Beach. The kids had an incredible time. Nina's ataxia was getting worse. She could no longer walk unassisted. Nonetheless this limitation didn't keep her from scaling the bank of the beach. She was determined to be like Teddy and climb up the embankment. Sure enough....eventually she did (my my assistance :) but she did it!). She then proceeded to pretend she was throwing snowballs at us, but instead of snow, it was sand. Eileen and I were so determined to get a photo of her smiling that we didn't care....at least until I got pegged with a sandball right in the mouth! Yuck!! EIleen of course thought it was hilarious...sadistic rascal!

























Although I know that 34 isn't old, I feel like I'm at least 90! My life, even prior to Nina, was a potential Lifetime Movie of the Week contender. Now, with this nightmare, it's most definitely a shoe-in!

After our stroll at the beach we had a lovely dinner. Todd and the kids frosted the cupcakes Eileen and Nina had made earlier in the day and the kids eagerly gave me their presents. Todd and the kids gave me a lovely frame with 3 photos of the kids for my new office. Teddy then jumped in and proudly gave me his gift. When I opened it, my mouth dropped. It was stunning; a Willow Tree figurine of a woman loving life, arms outreached with birds perched on them. I hugged him with all my might and thanked him. Instantly, he knew he'd done a great job and his beautiful grin stretched across his sweet face, "You like it mama?" "I ADORE it lovebug! I LOVE it!!!" The biggest grin ever spread across his darling face. He proudly and jokingly added, "Well, don't thank me, thank Holly. She took me shopping. She's the nicest lady ever!" I couldn't resist cracking up! I squeezed him and Nina some more. What delightful treasures I have!





For the remainder of the evening we pretty much hung out. At bedtime, I thanked the kids again for my gifts. Nina turned to Eileen and explained that she wanted to go shopping for my birthday too. Eileen jumped at the opportunity to go shopping with the queen :) My birthday was simply lovely! However, perhaps my favorite part about my birthday was what Holly told me later on. She explained that Teddy had asked her to take him shopping. Initially, they had gone to a chocolate store where Teddy had stated that I wasn't a chocolate kind of gal :) Amazing how children watch us and note our likes and dislikes. I guess I shouldn't be surprised that Teddy knows me so well; it just melts my  heart to hear that he does and that he puts so much effort and thought into me!

Eventually, they made it another store that had the Willow Tree figurines. Apparently, Teddy told Holly that I loved these (which is true!) and that I have a nativity from this collection (also true!). After Teddy picked out my figurine Holly told him that the placard describing the piece said it was entitled Happiness. What Teddy said next is what made my birthday, what is my favorite birthday gift ever. After Holly told him the name of the figurine he noted, "That's perfect because my mom loves happiness!" My mouth dropped to the ground and then after I collected it back up, I laughed in sheer delight! My sweet, 8 year old son knows me as well as my very best of friends. He knows that I love happiness, probably because I'm constantly riding him to reframe his negative attitude into a positive one :) Whatever the reason, Teddy knows me. His love is astounding and whether or not he thinks it is momish of me, he and Nina are my greatest gifts!!!

Tuesday, January 25, 2011

Day 140

Tuesday January 4, 2011

Today was MRI day. I woke up at 8am but when I tried to move, Nina locked her legs on top of my mine and wrapped herself around my left arm. I was trapped! I didn't dare move because I was afraid I'd wake her up then we'd really be doomed. I texted Eileen telling her my predicament. She just sent me a smiley face, laughing! What a rascal!

I lay there for 3 hours!!!! I was determined that Nina sleep as long possible, buying us time and hopefully sparing us heart ache! I wasn't able to go back to sleep! My mind was going crazy! Every dark and awful thought I'd ever had was trying to gain status as top dog, reigning terrible thought! So....I lay there and made myself engage in replacement behaviors. Thinking about the looming gloom did me no good! So...since this wasn't an option I needed to reframe. This is what I'm so desperately trying to teach Teddy! I closed my eyes and tried to think of all the wonderful things we could do with Eileen this week. I turned each new thought into a movie in my head, filled with as much detail as possible! I did this for 3 hours!!! Over the past 5 months, I have found this strategy to be unbelievably helpful! Each time I start falling apart, I make myself focus on something good in my life. I then turn that event, person, activity, into a "movie" in my head. Sometimes I go as far as building a soundtrack to go with my movie. I know it sounds weird but being able to do this has kept me sane! At this moment in time, what my dearest friend Eileen didn't realize was that I had an entire elaborate agenda planned in my head :) Boy was she in for it :)

Around 11am, Nina woke up. She was in a great mood and immediately asked to see Eileen! She and Eileen hung out on the couch watching cartoons as I showered and had some coffee. She was so snuggly with Eileen and Eileen loved every precious second of it!




Linda returned to the house around 1ish to pick us up. At this point Nina started to cry, but a low grade cry, not like the night before. She insisted that I be by her side; there was no other place on earth I'd rather be! We arrived at Cedars and her crying had dissipated. Linda introduced her to a new iphone app....a cupcake game that Nina instantly fell in love with! I went through the rig-a-ma-roll off the intake and before we knew it Nina and I were being called into the MRI, ready for sedation. This entire time, sweet, precious, and ever so brave Nina never once asked for food. God has given this little girl the spirit of a warrior!! She is downright extraordinary!!!

The anesthesiologist was a lovely man who listened to my protocol for sedating Nina and before long she was out and the MRI was started. We had an hour before Nina would be pulled into recovery so Linda took us to grab something to eat. Over lunch, we conversed about Teddy and Nina and went over plans on how to ensure that we had the right support system in place. I am so eternally grateful to be surrounded by friends who will battle (even me!) to make sure that we have all that we need. Sometimes we need things that we don't even realize we need until they are pointed out to us. It is so vital to have such friends; friends who will speak up and step in, with grace and love. Saying thank you just seems so meaningless, but to all of you that have and continue to support my family.....THANK YOU!!!!

In the meantime, I tried to track down Todd to no avail. I wanted to make sure that Teddy was going to be picked up on time. I had arranged for Holly to pick up Teddy and keep him with Jake for a playdate as a back up plan. I always have a back up plan! No matter how wrapped up I get in Nina and her treatments, I never stop thinking about Teddy. How can I?!?!? He is as big a part of my heart as Nina and needs as much of my love and support as she does. As I explained to Eileen and Linda over coffee, I'm surrounded by tons of people but I still feel so all alone, especially in regards to Teddy. He is such a special boy, literally and figuratively. He is the most unique boy I have ever known and I am not saying that just because he is my son. He truly is and those who have had the privilege to get to know him now understand. As such, he requires constant planning and nurturing! Eventually, Todd responded to my barrage of texts. He hadn't been feeling well. But then again, who is these days? I know I am not, probably never will again! I ironed out details for Teddy and asked Holly if she could take Teddy on a playdate after all. She lovingly agreed, but that is Holly, always available and willing to lovingly lend a hand! What a blessing of a friend!

Once in her stroller, Nina stopped crying. Nina loves that stroller. It has become her safety blanket, her source of familiarity and comfort in an ever changing landscape of white corridors, lab coats, and scrubs. My precious honey-girl!!




As Nina and Eileen played Dora and the Crystal Kingdom on the computer, Linda, Eduardo and I met with Dr. Danialpour. I adore Dr. Danialpour for a myriad of reasons and I deeply appreciate all of the accommodations and attention he gives us! However, I think what I love the most about him is that he is a hugger. For the most part, doctors don't seem to be the "huggy" type but not Dr. Danialpour. From the moment I met him, he has always given me a hug. Sometimes, all a heartbroken mom needs is a hug!

Prior to meeting with Dr. Danialpour, Linda and Eduardo had primed me that the news was good. I wasn't sure what to think about this. Good news to me meant that the tumor had shrunk, better yet disappeared. As Dr. Danialpour explained the results of the MRI, it became clear that "good" was a very relative term. The tumor had not shrunk nor disappeared. In fact, nothing had changed since the MRI in November. The chemo seemed to be working, especially the Avastin, since there was less enhancement in the results. There was also no edema. This was all "good" news. No change was good news. This all meant that we had time. Nonetheless, I still felt empty, numb, stuck!

For a good long while we talked about how to proceed next (continue with the same protocol), how to monitor symptoms and when to reintroduce steroids, how to know when symptoms meant she was just having a bad day and when symptoms meant things were turning for the worst. Dr. Danialpour graciously answered all of my questions and said that the next step would be to take another MRI in two months to re-evaluate the tumor. Bottom line, we had time. During this time, the doctor made it clear we would have good days and we would have bad days. However, he and the Marbans did make it clear that when things took a turn for the worst it would be as apparent as the searing sun in the sky....it would be a dramatic fall of the cliff. I felt nothing!

Cognitively, I understood that no change from November was a good thing and obviously I am thankful for time, but I also felt empty, like I had no really "new" information. No one could or can really tell me how quickly this falling off the cliff will happen (if it does....still hoping!!!) and exactly how her potential death will look like. I want to prepare!!!!!!!!! I need to know and there are so many things that I can't be told. Bottom line for me, Nina still has that monster in her brain and she still has a death sentence!!!!! My skin burned and my heart pounded with indescribable pain!!!! My baby was still dying!!! Her body was giving way and she was aware of it, aware of how she couldn't walk as well as she had at Christmas, aware of how difficult it was to stand up by herself, aware of how labored her breathing and talking were becoming, aware of how hard it was to string thoughts together, aware of falling apart!!! By far, this is the absolute worst!!! Seeing her self awareness!!! I can honestly say that it is a fucking living hell!!!! To watch your precious child be aware of her sick body....there is nothing more painful or awful!!!!! I can't even bother trying to describe how it feels....there are no words....I just cry!!!!!! It is hell on earth!!!!!!!!!!!!!!!!!!! HELL!!!!!!!!!!!!

After hugging Dr. Danialpour goodbye, I returned to Nina and Eileen. I hugged Nina tightly and reminded her of how proud I was of her and how much I loved her!!! She smiled! For her, it was over! She had moved on!! She had found something to make her happy and was eagerly engaged!! I want to be that girl!!!!!

We returned and had dinner at the Marbans. Before we left for Santa Barbara, I had my session with Dr. Linda :) Linda was extremely worried about me. She understood clearly where my pain and lack of outright jubilation was coming from. She understood I was living in hell, nevertheless, she also understood I needed some of my own medicine thrown back at me!!! As such, she lovingly reminded me that life is a gift and that it is our responsibility to make it wonderful and meaningful, not to get trapped in grief or allow fear to confine us! I know this! My heart and soul know this!! Sometimes, my ass just needs a kick or two to get it going again!

We thanked the Marbans, our eternal guardian angels, and headed back to Santa Barbara. Nina was elated to go back home! Sweetness!!! I was elated to have my honey-girl happily watching Sponge Bob in the back seat and to be holding my dearest friend Eileen's hand! I was grateful for everyone that had taken care of us at Cedars, for the Marbans, for Dr. Danialpour, and for the provisions we had been given. As we drove through the darkness of the 101, I thanked God for life. Life is a precious a gift from Heaven and it warrants our gratitude and love for God! I just need to keep reminding myself of that!!!

Monday, January 24, 2011

Day 139

Monday January 3, 2011

I woke up with another stomach ache. Trepidation made my mouth taste bad so I went and brushed my teeth. Plus, I knew Nina would complain if my breath stunk! I brushed my teeth but the nasty taste still remained. I literally brushed my teeth a second time (I am a thorough brusher for those of you who are wondering...my brother may dispute this, but then again this is coming from the man who as a teenager barely brushed his teeth at all! What made me even crazier was that he NEVER had a single cavity and I always did!!).

I took Teddy to school. Todd and Nina slept in for a while. I did some chores until Nina got up. We spent the day playing games and painting. She has been into painting again, which is wonderful! She has also been into playing SpongeBob Operation. It is so much fun watching her try to take out the pieces without buzzing :)

Mid morning I got a text from Eileen saying that all her flights were on time! She would be arriving at LAX around 6:30pm and would take a shuttle straight to the Marbans. I could not wait to see her again!!! After a couple of rounds of playing games, it was time to go to the oncology office. I had decided to cancel the Avastin treatment for today and postpone it until next week. The last thing I needed was for her to get sick as I drove to Beverly Hills tonight. Worse yet, I was worried she might develop side effects that would keep her from being able to get the MRI on Tuesday. I desperately wanted to know what the MRI had to say!!!

We quickly went to the oncology office and met with the doctor. Pam did us the favor of accessing her port. I was worried about the imaging center at Cedars doing it since she was not used to them. I thought it would be easiest to have a familiar person do it. Nina is just so brave. She hollered as Pam tried to find the port, but once she was accessed she stopped crying. However, when we got back into the car she was furious! She was not happy to have the port accessed, with all the tubing and taping. She made it very clear that she did not like my decision, "Mama I don't like this on!" I tried to explain that it was only for today and tomorrow and that it would then be out. She was not having it at all!!! Her weight gain made everything uncomfortable, and she now had a ton of chest tissue that made the port harder to find. My sweet angel!

As we raced to pick up Teddy, Nina declared that she wanted to buy herself a pink suitcase. I thought this was a great plan. She'd been wanting the pink hard case carry on from Brookstone for a while. I told her that we go to the store after we picked up Teddy and then could go get an ice cream cone. She loved the idea and forgave me for my bad decision....at least temporarily!

Teddy was in a great mood and greeted us with wonderful hugs! I told him our plan and he eagerly agreed. As we drove to the mall, the kids got into a discussion about love! I quickly turned on my camera and place it on my dash, recording each precious word! What I captured is perhaps the most amazing video I have every taken of my children. It is amazingly hysterical, loving, tender, stereotypical, and darling! I have watched this video close to 30 times. I love hearing how they go back and forth discussing love, how Teddy is daunted about his sister going on a dinner date and how he'd have to be the butler and drive them around, how Nina comes unglued when Teddy proclaims that he loves her, how protective Teddy gets!!!! Each word in this video is a precious gift to me as their mom and to everyone who loves them!





After our hilarious love conversation, we went to Brookstone to find Nina's suitcase. Unfortunately, they did not have a pink or red suitcase. They only had black and grey, which were unacceptable girl colors :) Despite the disappointment, Nina did not get upset. The kids had a blast trying out the massage chairs and then going across the street to GAP Kids. As Nina shopped (literally going from rack to rack) Teddy sat down in a corner and played with my phone (how more stereotypical could we get!).






A few minutes later, I looked over and saw that Teddy looked sad. I asked what was wrong and he said, "I feel like such a bad son that I didn't get you a Christmas gift!" He had tears welling up in his eyes! I feel to my knees and hugged him, stating that he was the best son in the world and that he had gotten me a gift, a pair of speakers for my phone. Quickly he retorted, "I didn't go shopping for those. Dad just bought them. I didn't get to pick anything for you. I picked dad a perfect present. You didn't get any presents. I 'm a terrible son!" My heart broke! He is such a sensitive and caring boy. I explained that he didn't need to worry, that he and Nina were my greatest gifts. Despite all of my attempts he didn't buy it! I told him if it would make him feel better he could shop for a belated Christmas gift but that I never wanted to hear him say that he was a terrible son, because he was the loveliest of sons, and a gift from God!

We paid for our GAP purchases and went and got ice cream. Everyone was happy! At the ice cream shop, we ran into our friend Kim and her daughter Olivia. Nina was happy to see Olivia. I love to see Nina smile when she sees a peer instead of turning shy. It tells me she is feeling good about herself!

Once back home, I finished packing our bags and loaded up the car. Teddy and I then went upstairs to do some homework. He did his homework well but then got furious that he had tutoring! He started tantrumming and going on and on about how unfairly he treated me. I told him that the best Christmas gift he could get me was if he learned to stop tantrumming about homework and tutoring. I admit this was totally bitchy of me! Worst of all, it didn't help....just made him madder :(

Around 6:30pm, Mario arrived for tutoring. Teddy started complaining and lamenting about how unfair his life was. Nina started screaming that she didn't want to go to Beverly Hills!! The screaming got louder and led to smacking me! I kissed Teddy goodbye and he screeched more. By this point, I was convinced the entire city of Goleta could hear Nina screaming. She pleaded with Todd to not let her go. I picked her up and walked to her to car. She screamed and hollered even louder. I simply got in and drove off!!! My heart was pounding and my hands were clammy! By the time we drove out of our complex the screaming had subsided. By the time we reached the end of the block she had completely stopped. I pulled the car over and got her settled with pillows and blankets. I turned on Sponge Bob and off we were! As we pulled onto the 101 I realized I had left my coffee in Teddy's room! Dang it!!

Thankfully there was no traffic at all so we made it to the Marbans in record time! It was so great to see Linda and Eileen!!! Linda did not like my "goth" black hair at all! Eileen just enjoyed watching Linda and I banter! Nina was ecstatic to see Eileen! She didn't want Eileen out of her sight!! For the remainder of the evening we all spent time together. The Marbans were saddened by Nina's ataxia but astounded by the brightness of her spirit and personality! They understood why I was so hesitant to put her back on steroids!

Prior to going to bed, we watched Barbie Mermaidia! That has got to be the longest Barbie movie ever!! Nina proclaimed that the loved the name Alina. I love her proclamations :)

Nina didn't go to bed until 2am. This meant she'd sleep in! Hopefully the MRI day wouldn't be a total nightmare!! This had been an incredibly long day. I was glad to go to bed!

Thursday, January 20, 2011

Day 138

Sunday January 2, 2011

Everyone slept in super late. I woke up with a stomach ache! Dread was pounding in my gut.

Nina was the first one up after me. As she ate a bowl of oatmeal, I scurried around making sure the last of Silas' clothing got packed up. I had told Todd I was happy to take Silas since he had to return to work the next day, but Todd declined. He and Silas were on the road by 11am and were going to meet Gordy half way. It had been an amazing trip to have him here.

I told my brother that it was like getting a glimpse into the future....seeing what they would be like in adolescence. From what I could tell, it wasn't going to be much different than my experience with Bruno in adolescence: a lot of eating, hanging out with buddies, and stinking up their room. Bruno laughed when I told him that this trip was the first time I noticed that they were kind of smelling a bit funky! Aghhh!

Growing up, my room was right across from Bruno's. I never understood how his room could smell like a gym, even after he showered :) Bruno just let out his famous rolling laugh. How I love the sound of my brother's laugh! I pray that Nina gets the opportunity to say that someday. She has always loved Teddy's laugh but hasn't quite figured that out, or at least how to put into words. When you're a child you recognize that you love your sibling but it isn't until adulthood that you are truly able to article the "ways" in which you love them. For me, I particularly love Bruno's ability to be affectionate, his heart for his family, his laugh, and his sick sense of humor! It is hard to spend time with Bruno and not laugh, both at him and at the funny crap that comes out o his mouth! Teddy will be that kind of man too. He has a killer sense of humor, always has, and it will only flourish with age. I pray, ceaselessly, for Nina to be able to call Teddy to just check in and spend 15 minutes laughing hysterically at his dumb-ass antics!!! My friend Jenny said it best when she came to visit....boys are willing to do anything to get a laugh from the girls in their lives. This is true when they are 3, 30, or a 103. Women just sometimes forget that!

Nina was exhausted. The past two weeks had been amazing but had pushed her physically. For the most part, she had kept up without much ado. However, with the increased symptoms came increased fatigue. It was now extremely hard for her to walk. She tried to get up a couple of times without calling for me and toppled over onto the mattress. I asked her to call for me so that she wouldn't fall onto the ground and get hurt. She frowned. How could she not? That request was like me asking her to admit defeat, that she wasn't capable of the simple movement of standing up. My poor sweet precious girl!

While Todd and Silas braved the New Year's traffic, the kids and I hung out and prepared for life to return to "normal". I did laundry and dishes while the kids played Club Penguin. After lunch, Teddy and I did some homework. He is getting so much better and controlling his temper. When I brought out the math packet he hadn't finish prior to the holidays, he slammed his head onto the couch in exasperation. I just sat there, blankly, starring at his insanity. At the beginning of November it would have taken 10 minutes for him to "pull it together" with me. Now it took on average 2 minutes. Upon seeing my annoyance, he sat up straight, ran is hands over his button nose and said, "Okay mom, I've got this. Let's just chill and get it over with." I laughed, softly so as not to piss him off, and kissed the bridge of his nose (I love that spot!) and thanked him for pulling it together. We finished the last two sheets without any further hitches. Before bolting for the outdoors (I'm sure he realized he should make his escape before I brought out something else for him to do!) he crawled into my lap and said, "Mom, you're such an angel! You're too good to me!" This time I laughed out loud as I squeezed him! I adore this boy and he knows exactly what to say to his sappy mama!!




Traffic was insane! Nonetheless, Todd and Gordy met half way and Silas was returned home safe and sound. By the time Todd made it back home it was almost 6pm. Nina was happy to see her dad and immediately asked him to play Wii. I could tell that Todd felt exhausted but he obliged. Teddy had rediscovered a toy box full of Star Wars figurines and was busy in his room playing pretend. As I put laundry away, I'd hear the sounds of battling light sabers and plummeting characters each time I passed by his room. That boy has a fabulous capacity for sound effects! Too funny!

Shortly after dinner, Todd went upstairs to cut his hair. Nina was sitting on the living room mattress doing a puzzle with me when she heard the buzz of the hair clippers echo down the stairs. Instantly she started crying and belted "Dada!!!!" Todd raced to the landing at the top of the stairs and asked why she was crying. Nina was not just crying, she was furious!!! She explained that he had promised to take her up the stairs so she could watch him cut his hair. Todd apologized and told her he had barely started. I offered to take her up. She refused the first two times but then agreed that I could carry her up. When we returned from Cedars in August she refused to have anyone pick her up or hold her. Her equilibrium was all messed up. For months we couldn't pick her up, but then at the end of November she started allowing us to carry her. It felt so good, although her increased weight made it a bit harder :( Since we returned home from Turlock, she had started to refuse being carried again. This made me very sad!!

I carried her up stairs and she climbed onto the toilet (toilet seat closed of course!). By the time Todd turned the clippers back on she had stopped crying! I was walking down the stairs when I noticed Teddy slumped in his chair. I sat on the bean bag next to him and asked what was wrong.

Teddy sat in his black desk chair, skinny legs dangling from the adult-sized seat, and said that he couldn't stand hearing Nina cry, that it worried him that her crying was going to make us sad. I pulled on his bare feet and dragged his sweetness over to me. I wrapped my arms around his waist and kissed the tops of his knees, reassuring him that we were okay and that she had just tantrummed because she wanted to see dad trim his hair. He shook his head in disagreement and confessed the following, "It's just that it's my  weakness!" I didn't follow so I asked him to clarify, to which he added "It just hurts me so much to see you guys cry! That's my weakness." I practically fell over. I was speechless! This little boy has the heart of a million adult men! What a gift from Heaven he is!!! I hugged him tightly and told him how much I loved him and that we were alright, even if we cry, we will always be alright. He hugged me back, even tighter then kissed the top of my head :)

I sat up and asked him if he wanted to grocery shopping with me. He declined because he wanted to settle Nina down by doing funny stuff to make her laugh, like his booty dance. What a heart of gold! Pure gold!!

Day 137

Saturday January 1, 2011

Peaceful.
Content.
Happy.
Distraught.
Heart broken.
Dismayed.
Fatigued.
Resigned.
Energized.
Motivated.
Invigorated.
Amused.
Happy
Content.
Peaceful!

My existence is topsy-turvey, a state of utter disorder. One second I'm happy and the next I'm feeling demolished. Good thing I'm surrounded by psychologists. Sometimes I wonder if I'm nuts but they reassure me I'm not!

The first day of 2011 was a roller coaster ride of emotions. Please refer to the blog entry entitled "I Feel Invigorated!" It describe in detail our first day of the brand new year and the emotions that were encircling me.

We all slept in.
Ate a fabulous breakfast of pancakes, bacon and strawberries with whipped cream.
Went for a hike at Campus Point through the bluffs.
Went to Zodo's for dinner.
Had movie night at home.
Got scolded at by Miss Nina.
Got amazing news...Eileen was coming on Monday to spend the week with us!
Watched the boys play XBox.
Hung out on the living room mattress.

At bedtime, Nina was a bit loopy from her Atavan. She toppled over in bed and I laughed. She pushed herself up and scolded, "It's inappropriate to laugh at me when I get hurt!" I laughed even more! Where does she get this vocabulary? She just laughed her rascally giggle.



Once she was asleep, I went to check on the boys. I caught them red-handed! They had snuck the laptop into bed and were playing Club Penguin! Todd had caught them doing the same thing Thursday night! They looked totally panicked :) HA! They turned in their goods and wrapped themselves up in blankets.

Everyone slept! We had survived the first day of 2011. That was perfect! Surviving...nothing better!

Wednesday, January 19, 2011

Day 136

Friday December 31, 2010

I woke up at the crack of dawn. Nina had slept great but I had slept restlessly. I couldn't get rid of the loom. It was everywhere!

I went for a long, rigorous run. Exercise always seems to relieve my stress.

After breakfast, I took the boys to the Natural History Museum. The only thing Silas had requested to do on this trip was go back to the Natural History Museum. Nina was extremely fatigued! She asked to stay home and play Wii with Dada. Her ataxia was getting worse and so was the drooling. While she played Mario Kart to her heart's delight, the boys and I explored the wonders that make up our earth.

Teddy and Silas both love science. It fits who they are. They are both such observant and interactive kids with their environments. The evidence is on their clothing...constantly covered in grass stains and mud :) I jest but I wouldn't have it any other way. Teddy may be 8, but I still have to empty out the pockets on his clothing before putting it the washer. I find just as many pebbles, insects, sticks, and leaves in his pockets at age 8 as I did when he was age 4 :)  I just hope that they allow their love for science to inspire them to greatness in adulthood! God has given these kids talents and I am determined to help them use them.






The tour of the Natural History Museum was a huge hit! The boys especially loved the exhibit on crystals and ended up each picking out a small crystal to purchase in the gift shop. After the museum tour, we returned to the Pier so that the the boys could purchase a few treats with their allowance money. I love watching Teddy and Silas. It is the same type of relationship that Adelae and Nina have; one of true and sincere admiration on Teddy's part and one of genuine love and mentorship from Silas' side. Silas is a big lug of a kid but he has a heart of gold and he has always taken Teddy under his wing, nurturing and challenging Teddy to become a better (not as quick to freak!) kid. Teddy needs these kinds of peers in his life!

By the time we returned home, there were only a couple of hours left before the Becchios and Ed Gover would arrive for our New Years Bash. For the last number of years this has been our tradition. The Becchios and Ed come over, we cook a smorgie of food, nibble all night long, the kids play, and we top it all off with making smores over the fire pit.

Before long, everyone arrived. Todd had made killer hot wings and a 7-layer dip so we all dug in. The kids hunkered down in Teddy's dorm to play XBox. The ribs were on the BBQ, carefully being babysat by John. About an hour into the festivities, Nina reminded us that we need to build the fire for the smores. Consequently, she and John began to strategically pile small pieces of wood into the fire pit, aiming for the best possible setting to build a fire. Then....John lit the fire. Well...at least he tired to do so! Each match he used would light a tiny fire that would dissipate within seconds. Nina just sat sweetly, encouraging him like a tiny cheerleader "It's gonna work now." Within 10 minutes John and practically blown through all of our matches.

Since I had no confidence in John's ability to build the fire (and we were out of matches!) I told him I was going to CVS to buy matches and a duraflame log. As I climbed into the car, John bellowed "I've got it!" Stubborn man!

Unfortunately CVS was out of matches but they did have an automatic lighter and a case of duraflame logs. I got in line; the place was crowded. When it was my turn to pay, the chubby, balding cashier asked to see my I.D. I looked at him blankly and asked what in the world for and he picked up the lighter, stating that they were now required to ID anyone who looked near 18 buying an automatic lighter. I literally cackled! It was such a loud cackle that it echoed throughout the entire store. I looked at him facetiously and said, "Do you honestly think I look like I could be any where near 18?" He shrugged his shoulders and said that he thought so! HA!!! I quipped that he only wanted to see how old I really was and he slightly blushed! I gave him my damn driver's license. He starred at it and then said, "Wow...you look really good!" I kid you you not! The ding dong actually said that! I cackled again and said, "Wow... you look really good for being so old? Gee thanks!" The poor guy totally got flustered and the gaggle of college boys behind me buying booze laughed at my harassing the dumb cashier! He deserved it!

When I returned home, to my dismay, I found the fire going....relatively going that is! John was beaming, like a little boy who had proved mommy wrong! John is just as competitive as I am so I'm sure while I was gone he frenetically worked on building that fire! Aghhh!!!  I went inside and told everyone my CVS story and sent out texts to friends and family! I knew my latest ridiculous nonsense would bring some fun New Year's Eve cheer to all I loved so dearly! Per usual...I got a barrage of outlandish comments...my favorite being my brother stating that It's the Goth hair! What a punk!!

As I predicted, John totally rubbed it in that he and Nina had gotten the fire going. AghhhMuahhaha!!! As John went inside, I casually dumped the remainder of my peppermint mocha onto the fire....Pufff...the fire was practically gone!!! A few minutes later, I saw Todd secretly summon John and whisper something into his ear. John raced to the fire pit and let out a loud, "Oh man!! I thought I had it going! How is this possible. Damn it!" Ha ha ha!! I won!!!

John laughed and complained for a few more seconds before coming to me and asking for the duraflame log. He looked like a little puppy, defeated, with his tail between his legs! I tried not to laugh but it was too hard!!! I laughed and laughed and  laughed! John thought I was laughing at his plight and laughed along with me! He just couldn't believe that it had blown out! He carried on and on about how carefully he had monitored the fire's progress and had been sure it was a done deal! His constant lamentation made me laugh so hard that within minutes I was crying from laughter! That's when he figured it out! He turned to me and asked if I had done something, "Did you put my fire out?". I didn't need to confess...he knew! Instantly he started laughed hysterically. Todd, Susan and Ed inquired about the lunacy outdoors and John told them about my evil behavior. Susan was very proud of me!! John just stood in the middle of the kitchen, shaking his head in total disbelief! I gave him a hug and a duraflame log!




After my cruel practical joke, the remainder of the evening was mild. We ate. The kids watched a movie (Aliens in the Attic....one of our favorites!) and played games. Nina gave David and Braden their pillow pets and they were delighted. After dinner, Nina eventually fell asleep for about an hour and a half. I love watching her sleep. She is just the sweetest thing!




Upon awaking from her siesta, Miss Nina joined the rest of the kids and had herself a couple of smores. The duraflame log really made a nice, strong fire :) The last hour of the evening seemed to take forever. Not sure why that always is. As we counted down the seconds I found myself imaging a peaceful, happy, healthy life. How desperately I want that!!!






Everyone hugged and the kids were euphoric that that they had stayed up so late. Nina smiled for a few photos (lucky for me she didn't yell, "But you always take pictures!") and even made a video wishing everyone a Happy New Year! Please see the post entitle Happy New Year to see this video. It's hysterical, with my favorite part being the punky attitude Nina delivers her message of good cheer! She is totally sarcastic, especially when she gives the thumbs up signal :)  How I love that girl's attitude.




The Becchios and Ed said goodbye. Before I knew it Teddy and Silas had turned on a new movie and were piled onto the mattress with Nina. All three of them were wired! Todd was exhausted so he went to bed. I grabbed my computer and a cup of coffee and bunkered down on the couch. The four of us watched Romeo & Juliet: A Seal Tale, a hilariously awful cartoon version of Shakespeare masterpiece staring seals! 

2010 had been the worst year of my life! My entire universe, every single aspect of my life, had been decimated!! I tried not to think about what 2011 would bring. I sipped my coffee and day dreamed instead! After the movie ended, the kids said goodnight and ran off to bed. Before disappearing upstairs, Teddy wrapped himself around me. As he brushed my hair to the side, he lay his nose on mine and whispered, "You're the mot beautiful mama in the world...my bestest mama ever!" I kissed his precious freckled nose and watched 2011 climb up the stairs ahead of me!

Day 135

Thursday December 30, 2010

Mixed emotions. My life is marked by mixed emotions: happy-sad, secure-anxious, strong-wounded, delighted-lonely, calm-frustrated, elated-heartbroken! Sometimes the range is covered at lightening speed, leaving me dizzy. Today was one of those days.

Elated was shopping with Adelae and Nina, seeing them try on items to find the "perfect" pair of glasses and outfit, hearing them laugh like the very "bestest" of friends!







Happiness was exploring the zoo with the kids and seeing their curiosity and sense of exploration explode with each turn.






Delight was unexpectedly running into Hanna and Doug Dreier. I had never met Hanna. As we entered the zoo she recognized me from the blog and introduced herself and her gorgeous family. The Dreiers had made Nina's Zoo Party a reality! They literally paid the site fee and made sure that Nina's complete happiness was secured at every turn! The kindness of strangers leaves me breathless!! Needless to say, the Dreiers are no longer strangers but cherished friends!!!

Anxiety was revisited by Nina's returning symptoms. Since our return to Santa Barbara, Nina's symptoms had been reemerging. Symptoms started rearing their ugly head starting on Christmas night, with a tiny bit of drooling right at bedtime. However, since returning to Santa Barbara, I had begun to notice a profound change. First, her sleep was further disturbed. Then, the drooling intensified. Finally, the ataxia (difficulty walking, keeping balance) returned with avengence!

On our way to the zoo, I called our oncology office to speak with one of the doctors and update them on the symptoms and to confirm our MRI and Avastin treatment for Monday. Unfortunately, the MRI somehow didn't get scheduled and the next one available was January 17th. This was not going to do. I needed to know why the symptoms were reemerging. I needed to know what was going on in her brain stem. I needed to know what was happening with the tumor!! Was it growing? Was there increased edema?  Sooo... I immediately called my guardian angels...Linda and Eduardo Marban. For the next several hours, I texted with several doctors and the Marbans, trying to make an appointment at Cedars for an immediate MRI. Linda and Eduardo are my fairy godparents! They are my guardian angels! Within hours....everything was rolling in the right direction. I breathed a sigh of relief.

At 4:30pm, Adelae said goodbye to Nina and Teddy. Nina was so brave as she hugged Addie goodbye, but I could tell she was heartbroken. Adelae hugged her tightly, as if trying to memorize the way Nina felt. I know I do that all the time. After one more set of hugs, Adelae and I climbed into our car and drove off to meet Joe half way! Adelae had to return home to spend New Year's Eve with her friends. Each visit with Adelae is a precious gift! We are forever thankful!!

The drive back after dropping off Adelae was long! There was a ton of traffic. Initially, I questioned why there were so many cars on the road but then I remembered it was almost New Year's Eve. The night seemed to engulf me, pounding me with a dark loom. August 19th seemed like a lifetime ago but then again it seemed just like yesterday. I had prayed so earnestly for the holidays with Nina and my prayer had been heard. Now....the year was coming to an end. What a cruel year! A myriad of thoughts raced through my mind. I tried to shut most of those thoughts out of my mind but they careened back in as fast as I threw them out! Before I knew it, holy terror had seized me! All I wanted was comfort!!