Day 153

Monday January 17, 2011

Today was a holiday...MLK Birthday. Nina woke up and asked if we could go to Chuck-E-Cheese. The girl is always planning :) I asked Teddy what he thought and he enthusiastically agreed so off we went to Chuckee's.

The kids had a blast playing the games and eating pizza. Nina was so motivated that she walked around the entire time. She even let Todd and I take turns walking with her instead of being glued to only one of us. My favorite moment was when I sat next to her while she ate some pizza (I was waiting for Todd and Teddy before starting myself) and she said, "Go away, you're making my food smell!" I practically spit out my root beer I laughed so hard! What a stinker!!! Comments like these are so priceless that I have to share them with my most beloved friends and family....however...sometimes my beloved friends and family decide to mock (e.g., "Ha ha....she knows your secret...you're stinky!") and ridicule ("I can't blame the girl...I can smell you from here!") me instead of simply enjoying Nina's wicked sense of humor :)

After Chucks, we returned home to a quiet afternoon and evening. Teddy played tree house with Cami and Katie, while Nina I played with the twin babies from next door, Etienne and Charlotte. Gina, their mom, is precious and she and her husband have been an immense source of support! While we were playing with the babies, my friend Morgan came for a visit. I forget that there are so many people that I haven't seen since August 18th. It is a surreal experience because while my world has come to a standstill, theirs continues. The beauty of it all is that Nina is touching every one's heart!

Day 152

Sunday January 16, 2011

Nina had slept so-so. Her ataxia had slowly been getting worse since the MRI. I was still holding off on giving her a higher dose of steroids because of all the side effects. Bruno had commented on how profound her symptoms had changed since Christmas. Yesterday, she had refused to let her "wiggliness" keep her from hiking around on the rocks and the bluffs. Today, it was hard to motivate her to walk to the kitchen. Dr. Danialpour had said that some days were going to be good while others bad. We just need to take it in stride and focus on creating happiness wherever possible.

Lucky for us, Nina was creating her own happiness. Nina had baby on the brain!!! Everything was about the baby, how big it was, when it was going to come out, who was going to change to diapers, etc. Bruno and Michelle especially loved the quote she had told Eileen about Michelle the prior week, "She has to eat a lot of food to cook up the baby!" Pure darlingness! At one point, I suggested that Teddy learn to change the baby's diaper and Teddy melted to the ground in disgust, "No way...now way Mister! Not happening!" We all laughed and Nina interject, "Don't worry, I'll change them!" Oh honey girl! How we are all praying for that!

I made a killer Tex-Mex fritata for breakfast (Teddy requested hard boiled eggs....totally random but good for him!) and we all stuffed our faces. As soon as we took our last bite, Teddy sounded the trumpets and announced the silly string battle was about to commence. The kids had an absolute blast. Who knew so much fun could come in a bottle :)

After the battle of the century :), we drove downtown to the Cabrillo Art Walk. Nina was tired and cranky and didn't want to go but we pressed on. Teddy was absolutely delighted to be out together! We parked at the pier and bought some candy at Mother Stearns. As we walked toward the Art Walk, he took my hand and kissed it. He looked over at me and said, "You're the bestest, most wonderful, most beautiful mom in the world!" I hugged him and told him I loved him to which he replied, "I love you more!" What a lovebug indeed!

For about 30 minutes, we walked up and down Cabrillo, enjoying the beautiful art. Teddy had lots of questions and comments and even complimented an artist, "I really like your art!" The woman was totally tickled by Teddy's sweetness! Eventually, it was time to return home and have lunch. This perked up Nina :)

After lunch, Bruno and Michelle said their goodbyes. Their visit had been such a blessing and now their departure was hard to bare! We hugged and squeezed and promised to see eachother soon!

The remainder of our day went by quickly. Nina napped while I ran errands. After dinner, Teddy and I loaded our bikes into my car and drove to UCSB. For a while now, I've been trying to do something special with Teddy on a weekly basis. He needs this one-on-one time and I cherish every second of it. Tonight, we drove to UCSB and then proceeded to ride to Campus Pointe. Teddy thought this was especially cool because it was nightfall. We arrived at Campus Pointe and hiked up to the bluffs. The stars were amazing and Teddy loved seeing the moon reflect on the pounding waves. This time together is spectacular and always leads to the most profound conversations ever!

Tonight, Teddy confessed that he missed being a little kid. We talked about what he specifically missed and he said he missed playing with daddy and having me call him love bug. I hugged him tighter and said I would be happy to start calling him lovebug again and that the only reason I had stopped was because he had asked me to. I asked what else he missed and he wasn't able to really identify anything so we went through a number of ideas and eventually identified that he also missed it when we hugged him for a long time when he got hurt. I then took advantage of the topic to explain that as we get older things change and we find ourselves with more responsibility but that it's a good thing. I also added (like in previous conversations) that sometimes life throws us curve balls and negative things happen but that we can choose to still be thankful and still choose happiness in spite of the negative things around us. Teddy said he understood and I am beginning to think that my mantra is setting in. I finished our talk by reassuring Teddy that he could always come talk to us, that we loved him profoundly and that we always need to communicate our needs and thoughts with each other. After we shoved our bikes back into my car, Teddy summoned me over to him and he wrapped himself around my neck (he was standing inside the car!) He held onto me for a long time and whispered into my ear, "I love you mama!" I repeated the sentiment to which he added before smooching me, "I love you more!" What a precious boy!

Day 151

Saturday January 15, 2011

Spending time with Bruno and Michelle just brings us joy! For the first time, Michelle's baby bump is really visible. She is simply darling, glowing! Bruno dotes on her. It's breathtaking to watch!

After breakfast, Bruno and I went to Vons to stock up on supplies for a picnic. We packed up a variety of yummy sandwiches, chips, fruit and Naked Juice! We loaded into their amazing new car, a Buick Enclave, and rode in high style to Ellwood Park. Bruno and Michelle had gotten engaged here and returned each year to take an anniversary photo. I asked if they wanted to go there and take a photo with their baby bump and they eagerly agreed! My brother loves taking photos but he equally enjoys taking photos with Michelle. I have always admired this about him! He is just so proud of his wife, and now family, and happily participates in all events, irrespective of how silly they may be. He takes after my father in this manner. My father is a jovial person through and through and loves to document his family's joy.

Wild Man

Run Mama Run!

Strolling through Ellwood

While we hiked around, Teddy ran around like a wild puppy, hair flying in all directions :) I love watching him run. He is so innocent and free! Like a little lion cub. At one point, he challenged me to a run. If I'd had on running show and hadn't been carrying about 10 pounds in the backpack I am convinced I could have beat him! Bruno, Michelle, and Todd were impressed that I was even able to stay in the race as long as I had :) I guess all of my running has paid off....I can semi-keep-up with an 8 year old....yippy!!

Our picnic was delicious and we had a wonderful time exploring the bluffs. Michelle and Bruno took beautiful photos on the bluffs and Nina was in a good mood. During lunch, Bruno taught the kids a new trick...to put chips directly into their sandwich so that with each bite they get a crunchy surprise. The kids thought he was a genius! Ha!!! If they only knew :) Nina especially thought this was brilliant, "It's too yummy!" she exclaimed in between bites of turkey sandwich laced with Ranch Doritos. Oh Uncle Bruno, what a guy!

We spent several hours playing around at the bluffs. By the time we got home, the kids were thoroughly tired and plopped onto the living room mattress to play Wii with Todd. Nina suggested playing Super Smash Brawl and every one (except for moi who took a tiny snooze at the foot of the bed for about 15 minutes) had a turn. Re-energized, I collected myself and suggested to Bruno and Michelle that we take some sunset photos at Hendry's Beach and then grab some appetizers before returning home for the Las Fuentes dinner. The sunsets at Hendry's are spectacular and we caught an especially gorgeous one!

I have always loved photography, well before high school. As an adult, I have always been classified as the dork that never forgets her camera and is constantly snapping away. I even got in trouble at Bruno and Michelle's wedding by their photographer because I was taking "too many" photos. Puh!!! As it turns out, some of my photos were better than his! Anyhow, life become very clear through the lens of a camera! There is something sacred about capturing a moment in time....capturing it forever!

When we returned home for dinner, we found a special delivery for Nina. It was from Patrick, Spongebob, Gary and Sandy and had come all the way from Bikini Bottom (courtesy of the Serenas!! Thank you so much!!!). Nina was thrilled!!! It was even better than gifts from Santa because who in the world ever got deliveries from Bikini Bottom!! Inside the treasure chest she found a myriad of gifts from the beach and a couple of scans of silly spray!!!! Teddy proclaimed war and thankfully Uncle Bruno immediately jumped in and suggested we wait to launch battle outdoors in the morning! I guess he is ready to have a son after all :)

Day 150

Friday January 14, 2011

Prior to Nina's illness I could honestly say that I was not a huge LA fan. It's crowded, filled with traffic to the brim and in all honesty I couldn't really see what all the fuss is about. However, having spent quite a bit of time there now, I must admit that it has grown on me! Now, LA is a place of refuge for me and today that is what I found there....refuge. The Marbans have opened their hearts and  home to us and I am forever thankful!

I spent the day with Linda and my spirit was renewed! Yvonne kept me appraised about Nina. The morning had started off rocky with Nina screaming her head off that I was gone (feel good for me!). However, Todd had helped her calm down and eventually she and Yvonne had a lovely day together, shopping, taking down the Christmas decorations, and being goofy. I am so happy that Yvonne gets to have this time with Nina. She loves Nina like her own child and Nina adores her, especially Yvonne's flair for fashion : ) Apparently, the two of them had spent quite a bit of time shopping and shopping for me! Oh my :)

On my way home, I picked up Las Fuentes. Bruno and Michelle were on their way down to spend the weekend with us! Nina was beyond tickled! She couldn't wait to see how big the baby had grown! I couldn't wait to hug my brother and my precious sister in-law! Pulling myself away from Teddy and Nina is extremely hard to do because I worry that I won't be there if something happens. However, I'm beginning to recognize that the occasional moment away does me wonders and helps me be re-energized to mother them to my fullest capacity!

I got home before Bruno and Michelle, however, their arrival was met with fireworks! Nina was elated and couldn't stop rubbing Michelle's belly! Precious girl! Oh how I yearn for her to meet her baby cousin, to change his diaper, to love him as he grows!

Day 149

Thursday January 13, 2011

Nina is in love with Larisa! Larisa was on duty this morning and the two spent time looking at Nina's new collection of earrings! Larisa loves accessories too so they bonded even further :) As previously, Nina fell asleep and Larisa had to leave. Larisa left her a note telling her she'd come back to visit but when Nina woke up she yelled at me, "She never getta stay!" and chucked the note at me as hard as she could! I love how I'm the innocent bystander and still get creamed with all the wrath!!

I texted Larisa the insanity of Nina's response and joked about their love affair! Larisa felt terrible that Nina had gotten so pissed but I could tell she was equally, if not more, ecstatic that Nina had claimed her as her True Buddy :)  I joke, but in all seriousness, we are so blessed to have so many people love Nina!!! She is blessing so many but at the same time she is being blessed by the thousands of people who love her, even if they have never met her in person! This is humbling! Simply humbling!!!

Larisa inquired about stopping by after dinner, which I thought would be perfect. The two of them could make-up over discussions about how to coordinate accessories with outfits :)

Before I knew it, the day had passed and it was time to pick up Teddy! Teddy has decided that he wants to let his hair grow out. For years, Todd has buzzed Teddy's hair super short. The reason he has done this is two-fold: first, Teddy's hair grows like a helmet...no real pattern or style to it; second, Teddy has two cowlicks at the back of his head that grow in opposite directions and therefore push the top of his hair into an exaggerated Alfalfa-like crest he affectionately refers to as his Pointy-Dointy! Bottom line, we are not sure there are many options for Teddy's hair but we are willing to work with him :)

Anyhow, as we walked toward the car, I told Teddy that I liked his hair longer and that he looked cute. As soon as I said this, he looked at me and scowled so I corrected myself and said that he looked handsome. This time he said, "No way!" I asked, "Then what can I say if I can't say you're cute or handsome?" The little rascal said, "Cool!" So....I proceeded to say (assuming with his approval) "You're so cool!" to which the snot quipped, "You sound so uncool when you say cool!" and took off running! He is such an imp!!! I had on boots with heels so there was no way I could race after him. When I caught up with him I asked him if he thought he was clever. He smiled his million dollar grin and said, "Yep and you love me!" He's got me there!!

Our afternoon and evening flew by! How does that happen? Around 7:30pm Yvonne texted me to say that she was on her way. My loving Yvonne had eagerly agreed to spend the day with Nina on Friday so I could go to LA and spend the day with the Marbans. Linda knows that I occasionally need the respite to feel like a grown up, use my brain in a different capacity other than to document the presence or absence of Nina's symptoms. The Marbans and LA are my escape and Linda is right, I need the respite! So, Yvonne was the bestest of friends and agreed to giving me the break!

Before bed, the kids helped me cut and slice apples for an apple crisp for the Marbans. I wasn't able to get them one for Christmas and it was over due! There's nothing like a warm, sweet apple crisp to let folks know you love them!

By the time Yvonne arrived Teddy was fast asleep and Nina was hanging out. It was delightful to see my friend and I gave her my biggest thank you hug! Soon after her arrival, Nina also drifted off into slumber. This gave Yvonne and I a tiny bit of time to catch up! Yvonne and I have been the best of friends for over a decade. We have been at each other's side through everything. It is only fitting that she is at my side now. We sat quietly in the living room, sipping tea, watching Nina sleep and talking about our kids. We have done this for years but now it is different; it is marked by heart break and longing. Eventually, Yvonne gave me on last, tight squeeze before going to bed herself. I crawled into bed next to Nina and tried to sleep....even if it was just for a few hours!

Little bakers!

Day 148

Wednesday January 12, 2011

Nina and her True Heart!

The first thing Nina said to me this morning, "I'm so glad I got my ears pierced!" Precious honey-girl!!! We spent the morning arranging all her new earrings in the jewelry box Teddy had given her at Christmas time. She delighted in the fishy and froggy earrings she had bought, but LOVED the flower earrings the most!

After breakfast she asked if we could go shopping for more earrings. All I ever needed was Nina's enthusiasm for shopping and I was ready to go! We jumped into the car and drove to La Cumbre mall to the other Claire's in town. We spent about 15 minutes looking through each tower of earrings before she decided upon which batch she wanted to take home. We bought a series of animal earrings (e.g., lady bugs, worms, chicks, elephants) and more flower earrings :)

As we drove back home, Nina said, "I bet Ryder is going to be excited about my earrings. I think he is going to be very happy!" That's when it dawned on me....she had done this all for him :) Just as the thought crystallized in my head, Nina asked, "Can we go take Ryder the picture I colored for him?" Aha!!! I was totally right!!! The little rascal had gotten her ears pierced because she wanted to look pretty for her true heart! My heart melted!!! We are all the same, whether we are almost 6 or 66....we want to look pretty for our true hearts!!

So....after we picked up Teddy we stopped by to see if Ryder was home. Teddy growled at the idea and insisted that he was staying in the car :) Lucky for us, Ryder was home and was a complete sweetheart!!! Nina piratically came unglued as she gave Ryder the WALL-E picture she had colored and he said "Thank you." She was so elated to see him!!! She couldn't stop smiling and after he hugged her, she looked over at my lap, as if calculating whether or not her weakened knees could hold her up :) My precious honey-girl was on cloud nine because she was with her true heart!! Myself and Kelly (Ryder's mom) just smiled, delighted by the joy emanating from Nina and the kindness pouring out of Ryder!

Ryder is simply a precious and gentle boy!!! It is obvious that his parents have loved and nurtured him because he has a heart of gold! He did not once hesitate in interacting with Nina. He hugged her without a second thought and he never gave her that Gee you look different look that she so often gets from other kids. Ryder was simply a gentleman, through and through! He was her buddy from preschool, a buddy that loved her and now that she was visiting, it did not matter that she looked different...she was still his buddy! All I wanted to do was scoop up Ryder and thank him for his generous spirit but I knew I'd probably freak him out....sweet little guy!!

As we stood there, I asked Nina if she wanted to tell Ryder what she had done the previous day. She blushed and said, "I got my ears pierced!" Without hesitation Ryder replied, "They look pretty. I like it." That was all it took. His affirmation and admiration sealed the deal for Nina and she proclaimed, "I love Ryder!" Kelly and I gently giggled as we suggested that the kids sit in the living room.

Nina sat down on the couch and Ryder proceeded to show her his legos! Kelly asked if Nina had gotten her hair cut and Nina recounted that I had cut it. Again, Ryder didn't miss a beat and said, "I like it. It looks pretty." Nina melted like butter and proceeded to tell Ryder that she loved him about another dozen times! Luckily Ryder is super mello and kind and never said anything to indicate that he was uncomfortable with Nina's continuous declarations of love :) At one point, Kelly spoke on Ryder's behalf and added that they loved her too and prayed for her every night! After one more declaration of love and a final hug, we said goodbye and agreed to plan a future playdate soon!

Nina did not stop smiling all the way home. She turned to Teddy and said, "Ryder liked my earrings." Teddy scowled! When we got home, Nina sat on the mattress and within seconds fell asleep! Honey-girl!!! Teddy walked upstairs, grumbling under his breathe how lame it was that he had to wait in the car! Oh Teddy!!!

Day 147

Tuesday January 11, 2011

For years I have known that God uses our children to teach us very important things, such as patience and unconditional love. However, God is specifically using Nina to speak to my core deficits and demons! To put it simply, my life has been dominated by fear. Through Nina's tenacity, fire and outright courage in the face of turmoil, I am learning to live without being shackled by fear!

Today, Nina woke up and immediately started crying. I asked her what was wrong and she said she wanted to get her ears pierced. For the past several months Nina has wanted to get her ears pierced but was too scared to have it done. In fact, Nina has wanted her ears pierced for years but for totally lame reasons (because I was 11 when I got my ears pierced) I had told her she needed to wait. So many times in my life I have postponed doing things because I thought I had time! How I was wrong!!!

Anyway,  I told Nina she didn't need to cry because she didn't need to get her ears pierced. Through a flood of tears and snot, she explained that she wanted to get it over with because she really wanted to get her ears pierced! I said absolutely we could get her ears pierced! She smiled through sobs and proceeded to cry for another 30 minutes :)

During the rest of the day, Nina would periodically burst into tears, "I'm scared!!!" she'd lament. I tried to assuage her fears by saying that it was just like getting a mosquito bite. Nothing helped. When we picked up Teddy from school the first thing she did when he hopped into the car was start to cry and say, "I'm scared to pierce my ears!" Teddy looked totally confused, sweet boy! When I explained what was going on his response was, "Nina you don't have to do it! You're pretty just the way you are!" Goodness...how I love this boy!! Unfortunately, not even Teddy's poetic words were calming!

After Todd got home, Teddy and I went to a basketball game and dinner. During our dinner, I got a message from Todd that Nina had been crying for the past hour, fearing her ears being pierced. I knew we needed to get it done so Teddy and drove home and picked up Todd and Nina. On our way to Paseo Nuevo Mall, Nina cried. Through the parking garage, up the elevator and through the mall, Nina cried. Inside Claire's and while I filled out the paperwork, Nina cried! The sweet woman at Claire's was used to crying girls and was very encouraging toward Nina! Todd placed Nina in my lap and for the next 15 minutes she cried. Eventually, I just told the woman to do it and I held Nina's head tightly!!

Click, click....her ears were pierced with two beautiful amethyst (her birthstone) studs and she STOPPED crying!!! I looked over and saw Teddy hiding in Nina's stroller, canopy drawn and hands covering his ears :)

Two seconds after the dreaded piercing!

Beautiful lobes!

No more crying!!! Nina was elated!!! Everyone could tell she felt beautiful!!! "I'm so happy my ears are pierced!" she repeated over and over again! "Dada, aren't you so happy my ears are pierced?" She was pure sweetness!!! Teddy proceeded to help her choose some earrings. Before I knew it, she had loaded up on about 2 dozen assorted earrings with her brothers assistance!!! She was so happy!!! She beamed!!!

Checking herself out in the mirror at home :) "I'm so pretty!"

Nina had feared getting her ears pierced forever but then she woke up and grabbed her fear by the earlobes and conquered it! I want to be like Nina!!!!

When we got home, Nina raced to the bathroom. She looked at herself in the mirror and said, "I'm so pretty!" I couldn't remember the last time Nina had said such a thing about herself. I kissed her on the check and agreed, "You're beautiful!" She was beautiful....she was and is stunning!!!!!