On Thursday August 19, 2010 we found out that our precious little girl has an inoperable brain tumor in her brain stem. The overwhelming amount of love we have received from our families and friends is a testament to God's grace and provision in the darkest of hours. To help keep all our loved ones informed, as well as, process everything we are experiencing, we decided to create this blog. We adore our sweet Nina and we need a miracle!!!
"Mama....is it time to go to the beach house yet?" Nina asked me at 6am!!!! I laughed as she rolled in towards me, lips puckered, and gave me the juiciest kiss, hoping I would be convinced it was time to leave by her grand gesture of affection :) I explained it was too early to wake up and reminded her that we would be leaving after we picked up Teddy from school around lunch time. "Ooh!" she whispered. Ooh had become her favorite response, and she said it in a very particular way, slightly winded and very young sounding! It had become one of my favorite new things about this Nina!
Two hours later, she rolled back toward me and once again tried her charms on me, "Mama....is it morning yet?" I just shook my head. The girl was strong-willed there was no doubt about that, but damn was she ever tenacious. I smiled and this time I poured the sugar on her; I kissed her chubby, beautiful cheeks repeatedly until she laughed and announced that she was ready to go to the beach house. Tenacious little monkey!!! I sat up and pulled her in for a tight hug. I explained once again the plan for the day: we needed to finish packing, cook the cookies and chicken, pick up Teddy, eat lunch, and wait for Dada to arrive home from work. Once Dada was home then we would be ready to leave. She pulled away from my embrace and said, "Ooh...let's go cook." So we did!
We spent the morning cooking a sundry of treats...peanut butter cookies, chocolate chip cookies, and cupcakes. We covered every one's favorite baked goods since we weren't going to have a working oven and it was now or never :) Our family is very spoiled....when we go on vacation, Brandi and I spend the entire time cooking and baking. It is a blast (although I normally end up feeling like I need a vacation to recover from the vacation :)) and everyone delights in the home-cooked goodness. Given the current cooking situation, Brandi and I had decided that we would prepare meals ahead of time and bring our crock-pots so that we would still have great meals but without the fuss :)
Sticky hands from making peanut butter dough.
Mama's little helper
After the peanut butter cookies were in the oven, we proceeded to grill some of Nina's favorite chicken tenders. She loves this recipe (Asian-fusion) and will frequently ask for this chicken. Last night as I seared the roasts, she inquired if I had remembered to make this chicken. I told her I hadn't but that as always she was full of brilliant ideas. I ran to the store, picked up the ingredients and she and I made the marinade. Once the chicken was off the grill I had it on a tray on the kitchen table so that it could cool off before I packed it up for the drive. As I pulled the second batch of cookies out of the oven, I heard her say, "Mmmm". I looked up and found her nibbling on a piece of chicken. She saw me and gave me the biggest smile, letting me know that she approved of my grilling skills :)
We finished our last tray of chocolate chip cookies and put them in the oven around 10:45am. Nina went outside to visit the twins next door while I brought all of our bags into the kitchen. After I had gathered all of possessions, I joined Nina in our neighbor's patio. There I found her helping feed Charlotte and Etienne. Nina loves the babies and they love her! It is precious and we are so thankful to have such amazing neighbors like the Turlindens!
Nina helping Charlotte and Eitenne with their bottles.
As we played with the babies, all of the sudden I got a whiff of something...."The cookies!" I shrieked! I am notorious for not setting the timer when I bake and for burning stuff. As I ran like a mad woman to rescue the cookies, I heard Nina cracking up and telling Janice (the Turlinden's nanny) that I always burn the cookies! Little stinker!
We saved the burnt cookies just in time to pick up Teddy from school. By the time we returned home, Todd had arrived and we packed up the car. The kids were elated!!! Luckily I had picked up some new movies at Blockbuster so for the majority of the 4 hour trip they watched DVDs, I napped, and Todd drove :)
Then it happened....the moment Nina had been waiting for arrived. We got to the beach house! To say that Nina was happy does not do the joy she demonstrated justice!! She was joyous, she was thankful, she was elated beyond words....her little spirit beamed!! About 5 minutes after we arrived, Papa and Nana arrived with Adelae, Silas, and Teague. The screams of bliss that erupted throughout the neighborhood when those 3 and Teddy and Nina saw each other will forever be seared in my heart (as well as my ear drums:)) We will be indebted to the Sypcher Family and their kindness forever!!!
For the first time in a really long time, Nina slept in. Not only did she sleep in, she didn't wake up in the middle of the night. Since we started fading the steroids we've noticed that Nina has been eating less and is more easily satiated during mealtimes. Additionally, she's asking for smaller meals during her midnight feast :) Now that we don't have to fast after midnight, we are no longer doing the midnight meals and she hasn't asked for them! Overall, it seems like she is sleeping better and is most definitely waking up in a better mood! I am so grateful because this means that she is resting more soundly!
The strange thing is that ever since we returned from Cedars, I spend very little time upstairs. Prior to all of this, the kids shared a room upstairs. The downstairs room (which is now Nina's) was a guest room/playroom. Now I practically live downstairs 24/7. The only time I go upstairs is to get clothes for myself or put laundry away. What I miss the most is our bedtime routine. I am really trying to make sure that we equally take care of Teddy....so that he doesn't feel like he is being left out and resent his sister. I am very aware of how he could feel abandoned. I've seen it for years with the siblings of the kids with autism that I work with. The reality is that the siblings of the child with autism don't understand that all of the adults coming into to home to "play" with their brother or sister is not a good thing....they just see it as brother or sister always getting the attention. In my supervision groups, I have always encouraged our staff to incorporate the siblings into the therapy and even reserve a few minutes of special one-on-one time with the sibling at the end of the session. I used to do the majority of the care-taking for Teddy and now Todd is. I see how much Teddy is adoring all of the extra Dada attention but I am also keenly aware of how my absence, albeit it necessary and as minimal as possible, could impact his little heart! I just pray that God will protect his heart and shield it from building up too much anger!
After Nina woke up, we leisurely had breakfast...oatmeal with brown sugar:) It was a gorgeous day so I suggested that we go out shopping. We arrived at the La Cumbre shopping center around 11 am. For the next two hours we meandered from shop to shop. I had decided that we should take advantage of Nina feeling better and continue with our "Gifts for Teddy" quest. By this point, I have collected about 10 gifts. My goal is that by the beginning of November I have collected about 30 gifts, mainly for birthdays and then some for special milestones like high school and college graduation and then wedding. We had a wonderful time going through Pottery Barn and Nina picked some really cool gifts for her brother. The neat thing is that she doesn't ask why we are picking so many gifts. It is his birthday month and we have been talking about Christmas shopping (which she has always loved to do!) so maybe it all just makes perfect sense to her.
Irrespective, I am so happy we are doing this. It is incredibly painful but it also brings me happiness to know that for at least a couple of decades Teddy will always get a gift from his sister on his birthday. With each gift she picks, I either take a video of her picking it out or take a photo of her with the item. This way, Teddy will get the actual gift plus the photo every year. I've had some people question why I am doing this...and I understand that it is a bit morbid, but I desperately don't want Teddy to forget his sister, forget how much she loved him, adored him, worshiped him! I am very aware that he is 8 years old and that if Nina has to go to Heaven that he will carry a tremendous amount of pain for the rest of his life. Nonetheless, he is 8 years old and his memory of her will fade, that is what happens with childhood memories....they fade until they are just blurry images. I don't want Nina to become a blurry image in Teddy's mind! Above all else, the potential of Teddy losing his sister is what kills me the most! I could care less about my own pain or the pain of any other adult....but Teddy's pain is unbearable! I look at his freckled little face and how his beautiful blue eyes deepen with sadness when he asks how she is doing and if she is going to be okay. Watching your child be in pain and not being able to do much about it is a living hell!!!!
We spent the majority of the afternoon shopping and picked up another 12 gifts. It was amazing! We had lunch at Miss Nina's favorite hot spot....Panda Express! She ate a ton of broccoli and green beans this time and very little orange chicken. Personally, I prefer it that way:) Then it was time to pick up Teddy. We drove to Kellogg. Originally, Teddy was suppose to have a playdate but his buddy had to go to the dentist so I decided to meet him at the entrance of the school yard. When he saw me he shot me the stink-eye! Both of my children are Ph.D.s in shooting me the stink-eye!! Funny thing is that it didn't bother me that he had done so; previously I would have been totally mad and how disrespectful he was being. But now....I was just happy that it was a normal little boy behavior. Normal little boy behavior (regardless of how annoying it was/is) is still normal and I crave normalcy for Teddy! If Nina has to go to Heaven his life will never be normal again so I will take as many normal moments now as I can have for him!!
After Todd got home, I decided to run a few last minute errands. As I wandered through Paseo Neuvo picking up a few birthday gifts for Todd and Teddy (we were going to celebrate their birthdays at the beach house) I suddenly started feeling extremely overwhelmed! In essence, I had spent the day shopping with Nina for gifts that she may never be able to personally give to Teddy. I actually started feeling dizzy! A million different thoughts started pouring through my mind...I was angry all over again with the situation....why should I have to be buying for my dying child to give to her brother!! My life was not suppose to be this way!!! But God is never distant....once again He threw me a small life line.
At that precise moment, I felt my cell phone vibrate in my back pant pocket. I took it out and it was my friend and colleague Mario. He had some supervision questions and wanted to know if I could briefly meet. Luckily he was in the neighborhood and within a few minutes we were meeting at the Coffee Bean & Tea Leaf. I was so happy to see Mario! And so relieved to be distracted from my mind! Sometimes, I feel that my mind is my own worst enemy! With Mario I laughed and momentarily (just a moment!) was able to concentrate on something else, helping the Latino families we serve. At least while I met with Mario I felt like I could give someone hope...help their child with Autism...but then again I quickly fell into sadness because I deeply lamented that in spite of all my training and hard work, there was nothing I could for my own sick baby! All I could do was pray and pray I did!
As I sat there and chatted with Mario, I started to smile. I smiled because as Mario spoke I could see how God was reaching out to him through Nina....it left me in awe! I have never purported to know why this is happening to Nina or to understand what the purpose is. I know that there is a purpose and I submit myself to the fact that I may never know that purpose until I meet my Maker but God is working in people's hearts through Nina. I know God is working in my heart, He is working in my family and friend's hearts, and He is working in complete stranger's hearts...all because of a perfectly beautiful little girl named Nina!
After I met with Mario, I got a call from Gordy that the stove and oven at the beach were not fixed therefore we were going to have to improvise our regular menu. Finally...a task :) I immediately went to the grocery store and grabbed several roasts and some chicken. I do best when I have things to accomplish. As silly as it sounded, not having the oven or stove work was a great gift....it gave me and Nina an important objective....prepare a bunch of meals ahead of time :) So...prepare is what we did. We made four roasts, a ham, and peanut butter cookie dough that evening! At one point, all four of us were in the kitchen dancing to Dynamite by Taio Cruz!! Nina was just in complete hysterics as her Dada sang (perfectly because Todd has an incredible voice), her Mama danced (ridiculously!!), and her brother bounced off the walls (one second break-dancing and the next belting out some tune). All in all....it was a comical scene and we loved it!
Mama and Nina making our favorite peanut butter cookies!
Elsa left bright and early. When Nina woke up she actually started crying when she realized that Elsa was gone. Elsa is magical...always has been and the kids had loved that about her. Teddy slept in and I took him to school late. I loved hearing his classmates holler "Hi Teddy!" and "Teddy is back!" I most of all loved seeing the sheepish grin on his beautiful face!
Nina and I went home and unpacked some more. We had quite a bit to do before Thursday. On Thursday, we were leaving for the beach house. Todd's Uncle Wally and Aunt Bonnie have a beach house near Santa Cruz. They generously let the family use it for vacations and all of the vacations that we have taken as a family with Todd's family and mine have been there. The kids have incredible memories there and for weeks Nina has been asking to go there. Initially, I had said no but Nina was so strong now that Todd and I felt like we could go. So...we had two days to get all the details taken care of. Nina was delighted....more like gleeful!
While Teddy was at school, we did some grocery shopping. As we passed an aisle, Nina shouted, "Stop Mama...we need that!" She was pointing at a bag of sour cream and Cheddar chips. I smiled. It had been years since I had those chips. I grabbed a bag and we were off. Once we got in the car, she asked if we could open the bag, which we did. To my surprise and Nina's delight, those chips were addictive!!! Dang it! The bag was practically gone before we got home. As I pulled her out of the car seat, Nina said, "Mama those chips are super yummy...can you buy more, one bag just for me?" Sweet girl!
After school, Teddy and Nina played with Cami and Katie. The girls are such good friends to our kids and the Vineals are an incredible support for us! In fact, after dinner Larry came and picked up Todd and they went to Dargons (a local Irish pub) and played darts in a local league. I am so glad that Todd has good friends and can get out a bit!
While Todd played darts, Teddy and I butted heads over homework! With all the routine changes, he had started complaining about homework again. I stand corrected...he wasn't complaining....he was tantrumming at horrifying levels. Finally, I had enough and pulled out the token system that we had used in previous years. He was angry and said that he wasn't a baby anymore. I explained that I didn't want to spend our evenings arguing and this was how we were going to solve the current conflict. After so more arguing, he came up to me, wrapped his arms around my neck and said, "Okay mama....you're right...let's do better!" How I love this boy! He is incredible!!!
Unfortunately our peaceful slumber did not last very long! I woke up at 5am and showered once again to help me wake up. Eileen's parents arrived at 5:45am to pick up our stuff. I literally put Teddy's pants on and carried him to the elevator. He was such a sweetheart....didn't tantrum or fuss....just curled up next to me in complete exhaustion. The drive to the airport was perfect....no traffic. We hugged Jessie and Ken goodbye! They are such dear friends and in the middle of their greatest happiness their hearts were breaking for us!!
Unlike our previous two recent visits to the airport, this one went without a hitch! We quickly went through the line, got through security, found some breakfast and boarded the plane....into Economy Plus not First Class :( Funny thing was that Teddy was so tired that he didn't notice a thing. He simple grabbed a pillow I had brought and tucked it under his perfect face). Teddy slept on my lap for almost the entire 5 hour trip! It was perfect! At one point he crawled into my lap and put his sweet puppy mug right up against my face. His stinky breath fell on my face each time he took a breath. It was so peaceful, so delicious, so amazing! There really isn't anything like the perfection of your sleeping child to quiet a restless spirit.
Teddy woke up with 20 minutes remaining of the flight. I finished writing a few emails. Once we landed I texted Todd and he told me they were on their way. We grabbed our carry-ons and made our way to the baggage claim area. As we rounded the walk way, Todd and Nina (in the stroller) popped out and surprised us! Teddy was elated to see his father and sister! Nina smiled bashfully as we hugged her. She reached behind her back and pulled out gum she had bought for us, orange for me and sour apple for Teddy. She was so proud! Teddy thanked her without having to be reminded. I kissed Nina another time, so happy to see her perfectly chubby face!
We drove home and Teddy told Todd and Nina all about his adventures. He spent an inordinate amount of time talking about the squirrels he had chased, and how on multiple occasions he had almost stepped on one, "Dad...I almost stepped on his head...I was so super fast, it was crazy!" Todd just laughed! Nina was a bit puzzled, but then again she is a girl and we don't generally find chasing squirrels as diverting as boys do:) Once we got home and Teddy started playing, I told Todd about how Teddy had developed a mad crush on Eileen's future sister-in-law and how at one point when she, Eileen and a few of Eileen's friends were dancing to "Single Ladies" I caught Teddy starring at her. Wherever she went on the dance floor his gaze followed. What was best was that he was eating his chocolate cake and dancing himself. It was so stinking cute that I had to point it out to Eileen's brother...I warned him that he better watch out because he had pint size competition! Sweet boy! I remember when I used to be the most beautiful girl in the world to him. Those days are long gone :(
When we got home, I curled up next to Nina on the mattress in the living room. The next thing I knew it was dinner time! I had fallen asleep. Apparently I had slept so deeply that I hadn't felt the kitty jumping all over me and playing with my scarf. Todd said that all three of them had sat on the couch laughing! Nice! I was tired!!! That much was true!!
A bit after dinner, my cousin Elsa arrived. She had recently returned from South Africa where she is doing research and was on her way to a conference in LA. She had stopped by to spend some time with us before returning back to South Africa. It was so great seeing Elsa. Growing up she had been my best friend! I had always wanted to be like Elsa. She was beautiful, talented, fearless. These are qualities that I still admire in her!
The rest of the evening was spent unpacking, playing Club Penguin, taking baths, and reading Captain Underpants. I was so happy that Teddy and I had gone to Boston. It was an incredible event to be a part of and I cherished the time with Teddy. Now, back home...it was time to return to reality! Once the kids were in bed, Elsa and I climbed into bed ourselves. We talked for hours...literally! We had so much to catch up and it felt so good to have my childhood best friend listening to me. We talked until 3am and then fell asleep holding hands! Elsa and I barely saw each other as adults. We lived in different states (and now in different countries) but it did not matter....we always picked up where we left off. We loved each other deeply, to our cores, and that is all that matters! Time and distance can never change that kind of love and I praise God for it!
Today was an incredible day....full of tears....tears of happiness for my friend's joy.....tears of happiness for my son's birthday....tears of sadness for all the things Nina might miss.....and tears of sadness for all the things I will miss out on with my daughter if she has to got to Heaven now! I tried to contain myself. I even asked Dave's best man, Jay, to try to redirect me when he saw me losing it, but it was to no avail. I couldn't control it! The emotions were too heavy! Fortunately, the wedding was a sunset wedding and the Rabbi placed the best man and me in a strategic position to block the sun from Eileen and Dave's faces. From where we stood, Eileen couldn't see me sobbing throughout the ceremony. I was thankful for that! Although for the rest of their lives, my sobbing will be recorded on their wedding video :(
Me trying to convince Teddy not to chase squirrels and get dirty! If you look closely there is one in
the foreground to my left taunting my poor boy!!
Eileen looked incredible and Dave was beyond handsome! It was evident to everyone there that they were deeply in love! The ceremony was beautiful and the Rabbi included a beautiful prayer for Nina...of course I sobbed! Luckily, Teddy was seated with Eileen's brother and fiancee Lauren (which Teddy had a mad crush on!) and preoccupied playing Club Penguin so he didn't notice my crying! I tried to control myself but it was impossible. What made it worse was that I was facing the entire audience. I am such a guarded person when it comes to my negative emotions and there I was standing in front of about 70 people crying! It was torture! The worst part was when I'd inadvertently make eye contact with someone. They would look at me with such kindness and empathy....but all I could do was cry!
After the ceremony, we had a gorgeous reception on the roof top (a gorgeous enclosed area atop of the Taj Hotel in Boston, right across from Boston Commons). As it grew closer to the time for toasts, my heart raced! I really wanted to do a great job for Eileen but I was terrified that I was going to sob the entire time. Luckily, the best man Jay had given me some material the previous night that would add some much needed humor to my speech at the beginning, hopefully helping me avert disaster. Below is the speech I wrote and said:
Good evening everyone. For those you who may not know my name is Rosy and for the past eight years I have had the privilege of calling Eileen my best of friends and sister. Eileen and Dave, thank you so much for having us be a part of this incredible day! It has been amazing and we are so happy for you both! Normally, I don't need notes to deliver speeches but it has been a long trip and I am a bit overwhelmed so I apologize...please bare with me!
So last night during the rehearsal dinner, Jay and I were teasing Eileen and Dave about our toasts and all of the material we were going to use. Dave was quintessential Dave...totally calm, laughing at how silly Jay and I were being. Eileen on the other hand was totally squirming around in her chair, trying to finagle details from me (to no avail) and what I loved most was that Dave was enjoying this scene.
So...as we sat there, Jay said that he was confident that he had the whole "best" speech of the evening thing in the bag. Now, I am fiercely competitive so I asked Jay what would give him the audacity to think this, to which he replied:
It really doesn't matter what I say....all bridesmaid's speeches are the same:
1. They talk about how the bride is their sister
2. They go on and on and on and on about how they love the bride (their sister) in an incoherent fashion
3. They blubber like a baby
I sat there seething b/c he had pretty much nailed my speech. So...I was up all night long rewriting my speech. Thanks Jay...hope you're proud of yourself!
Okay, so now I'm going to try to deliver the latest version of my speech without being completely stereotypical.
As I said, Eileen and I have been sisters for a very long time. As her sister, I have known that Eileen's biggest desire in life was to find her soul mate and build a family. What most of you probably don't know is that I am Portuguese. I was born in the Azores and was almost 3 years old when my parents immigrated to this country. I knew that Dave was the "one" after Eileen told me he was born in the Azores. That was it...I didn't need to know anything else about Dave...so I decided it would be the perfect touch to read an Elizabeth Barrett Browning poem from her book "Sonnets From the Portuguese" as a little nod to Dave's birth place.
The poems is titled: How Do I Love Thee? Let Me Count the Ways.
How do I love thee? Let me count the ways. I love thee to the depth and breadth and height My soul can reach, when feeling out of sight For the ends of Being and ideal Grace. I love thee to the level of everyday's Most quiet need, by sun and candlelight. I love thee freely, as men strive for Right; I love thee purely, as they turn from Praise. I love thee with the passion put to use In my old griefs, and with my childhood's faith. I love thee with a love I seemed to lose With my lost saints,--I love thee with the breath, Smiles, tears, of all my life!--and, if God choose, I shall but love thee better after death.
I remember when I first read this poem. I was a freshman in college and I vividly remember thinking, "Whoa...her husband Robert must be something else!" because you can feel the magnitude of their love in her words. I remember thinking....does such love really exist?? Bottom line, at my core I am a hopeless romantic, but I have not really seen this kind of love in my life many times. After tonight we can all go home and say that we have seen this kind of love...we have seen it in Dave and Eileen!
Eileen and Dave, the love that you two share for each other is breathtaking. Dave, when you look at Eileen you look at her as though she is your queen and it visible that Eileen feels like a queen. When you look at Eileen, you lock eyes with her and don't let go...neither does she. It is intimidating and unbelievably beautiful!
What is especially amazing about you two is that not only do you love each other fiercely but you love your friends and family with the same magnitude and sincerity. That much was completely evident when you two completely changed your wedding plans and flew out to Santa Barbara last weekend so that my family, my Nina could be a part of your most sacred day! Thank you! Thank you! Thank you! For the rest of my life....thank you!
Ladies and gentlemen, can you please raise your glasses for one more toast to Dave and Eileen.
Dave and Eileen....may you spend the rest of your lives counting the ways that you love one another. God has blessed you profoundly and we pray for a lifetime of happiness and joy!
To Dave and Eileen!
L'Chaim
I delivered the speech without having to read it from notes (except for reading the poem) and hit it out of the ballpark....total home run! At one point, the best man Jay stood up and said he conceded and that I won!! Laughter erupted! I was so thankful for being able to do a good job! I wanted Eileen and Dave to know how much I loved them and I wanted to make Eileen proud! I think I accomplished both!
Shortly thereafter, a birthday cake arrived for Teddy! We all sang him Happy Birthday but he refused to blow out the candles, asking me to do it instead....my boy does not like lots of attention and 70 people singing was quite a bit :) Later on he told me he was thankful and that it was very special :) During the remainder of the wedding we visited with Eileen and Dave's wonderful family and friends. Intermittently, I would burst into tears, madly wiping them away so no one (especially Teddy) would see. The worst part was during the father-and-daughter dance. When Eileen and her dad started to dance it was too much to bare....the pain was too severe! I asked Jay and his wife Jen to watch Teddy while I rushed to the bathroom....again....to cry! I cried and cried! Dave's sister Erika and Eileen's Aunt Donna found me and gave me great big hugs! The kindness and compassion of strangers is astounding! Every single person there at that wedding knew of our pain and they each made sure we were well taken care of. Thank you Kleins & Feldmans!!!!!
After I recovered from my breakdown, I invited Teddy for a night-hike through the Public Gardens as a birthday celebration. He immediately jumped at the opportunity for adventure and we were off. We meandered through the park with Teddy telling me stories about each and every squirrel he had chased earlier in the day (Eileen's brother, fiancee, and father had taken Teddy to the Commons while Eileen and I got ready. Teddy had an absolute blast!) I love listening to Teddy's stories. They are incredible and I can listen to them for hours! I pray that he never stops being a story teller!
After our stroll through the park, we said goodbye to Eileen and Dave and their families and friends! I hugged my beautiful friend one more time before her father walked us to our hotel! Once in our room, Teddy was eager to break into his chocolate birthday cake. So we opened the box ready to devour the cake when we realized we didn't have forks. I put my heels on and off we went to get utensils. What happened next will remain one of my favorite memories for the rest of my life. There we were in the Plaza Hotel at 11:30pm running through the hallways, my blue chiffon dress gliding through the wind and Teddy's giggles permeating the air. Teddy beat me to the elevator both times....completely delighted with himself! On our way back up, Teddy pounced onto the railing inside the elevator and swung his arms up and around in a grand gestures. He then looked at me and said, "Mom you look gorgeous!" He then leaned in and gave me the biggest kiss right on the lips. He simply took my breath away! We raced back to the room...he won again....and then he climbed into bed where he munched on chocolate cake and watched the Pirates of the Caribbean. I took the opportunity to take a long hot shower! I let the steaming water pour over my body and....I cried....I just cried and cried! I cried for longing that I feared with Nina and I cried for happiness over my little man! After I cried, I crawled into bed with Teddy and feasted on chocolate cake. We took a few more bites then put the cake away and turned off the television. Teddy wrapped himself around me and whispered that he loved me! I was in heaven! We fell asleep!
We almost missed our flight again!!! It was an unbelievable morning! We arrived at LAX with plenty of time to check-in and get breakfast. We got in line and then were told we needed to go to another line because we were first class. This happened 3 other times. Before I knew it we were in a completely different terminal. I asked an agent where our gate was and she told me we were in the wrong terminal. I almost had a heart attack! Teddy actually started panicking...poor guy, "Mom, are we gonna miss our flight?" he pleaded. I explained to the agent that we had been told repeatedly to keep getting into different lines because we were first class. I had known something seemed fishy...first class is special and all...but normally that doesn't mean you go to a totally different terminal from the commoners. The agent tried to reassure us that we had 20 minutes and go catch the flight....if we ran....so ran we did! Poor Teddy....his anxiety was through the roof and so was mine!!! I kept reminding myself and him to take deep breaths.
We ran as fast as we could...then we saw a woman in one of those little airport golf carts. I raced up to her and told her our sob story. She felt bad enough that she gave us a ride to our terminal. It took us 5 minutes to arrive at Gate 71A by cart when it would have taken us 20 by foot! I enthusiastically thanked the women and Teddy and I ran to the gate. They had just started boarding first class....so on board we went! As soon as we boarded the plane, Teddy's anxiety was gone! He literally sighed and said, "Boy that was a close one!" I laughed! He was right!!! We walked on-board and found another passenger sitting in my seat. She apologized and realized that she was in the wrong one. The funny thing was that the passenger was none other than Dilling Yang, the wife of Chancellor Henry Yang of UCSB. What a small world!
Once we got our bags in the overhead compartments, Teddy and I were able to absorb the reality of first class! I have never flown first class. Now I know why it costs so much! Teddy was in heaven! From the moment we sat down until we landed in Boston we were served and pampered like nothing else! Teddy could not believe how wonderful flying was. The kid is now ruined for life!
The flight was wonderful to say the least! Teddy ate all of the snacks we were given, played a few video games, watched an episode of Star Wars, and spent the last hour of the flight re-enacting a fight sequence from the movie with his fingers as substitutes for action figures....and non-stop sound effects! One of the things I most love about Teddy is his imaginary play! Teddy has incredible pretend play skills, way better than Nina. He has always had a talent for imaginary play and kids are drawn to him because of that! Part of his pretend play consists of sound effects. I have never known another child to have better sound effects than Teddy! It is an incredible talent and one that I cherish dearly. On multiple occasions as his index fingers battled (one was Anakin and the other Obi-Wan) the flight attendants or other passengers would smile at me, enjoying the sweetness of his sound effects and pretend play! What a cutie-pie my peanut is!
Loving First Class!!
We were greeted at the airport by Eileen and Dave's fathers! Mr. Klein sweetly had a tiny pumpkin for waiting for Teddy, which Teddy immediately incorporated into his pretend play. We drove about 20 minutes to Dave and Eileen's place in Lexington. Their house was darling in a picturesque New England neighborhood. As soon as I saw my darling best friend, I wrapped her in a huge hug! She had been waiting for this moment in her life for a very long time. I was so happy I could be by her side, albeit incomplete without Nina and Todd.
We hung out at Dave and Eileen's for about an hour then we were off to the rehearsal dinner at the Capital Grill, an incredible upscale and gorgeous steak house. I was worried that after a 5 hour plane ride that Teddy would be a monster during dinner. Not only was he not a monster, he turned out to be Prince Charming! It sure helped that he had his Macbook and played Club Penguin the majority of the evening but he was amazing! Everyone fell in love with him. He had perfect behavior and manners! Eileen's father talked about how Teddy was the most photogenic child he had ever known and he was right. Teddy had never taken a bad picture in his life. A few years back he had told me that he couldn't remember how to smile. Adelae was present when he said that so she told him the trick was to pretend he was laughing. So...since then Teddy has always had the perfect smile on command because he makes himself slightly laugh (it's barely audible but is there!). As we ate our appetizers (me the most incredible crab cakes ever and Teddy Cesar salad) photos were being taken left and right. Everyone started cracking up because all I had to do was tell Teddy, "Now!" and he'd stop what he was doing and flash a perfect smile! Eileen and Dave's family could not believe their eyes...but then again there is only one Teddy Fredeen!
After dinner, we returned to Dave and Eileen's. Teddy played with the Lego gift Eileen's parents had given him and Eileen and I finished packing her bags! Eileen was the perfect calm bride. Dave was her living Prince Charming so there was no need for nerves! I could not stop smiling for her! After another hour of visiting Teddy and I said goodnight and went to bed. Teddy kissed me and told me he loved traveling with his mama! My heart melted. He fell asleep and I proceeded to polish my speech for the toast! I was determined to give a great speech....just needed to figure out how to avoid all of the land-mines when it came to talking about Nina :(
I had a hard time sleeping last night and woke up even earlier than usual. Today was Nina's last radiation treatment and I had a flurry of mixed emotions running through my mind. Part of me was relieved that it would be over, that Nina wouldn't have to fast, that our mornings wouldn't be occupied by hours at the Cancer Center, that she wouldn't be so tired or easy to anger about having everything revolve around treatment, that she wouldn't be worried about others touching her port, and that we would have a bit more freedom. However, another part of me was tormented by concerns about what impact if any radiation had on the tumor, how quickly would Nina remain stable, how quickly would symptoms re-emerge, how long would it take for Teddy to start asking questions about Nina's long-term health, would we get through the holidays, what would life look like now. In essence, the unknown seemed so all consuming, so unfathomable, so uncertain. All of this lead to us living in a permanent state of "What now?"
Originally, Thursday was suppose to be Nina's last day of treatment but because of power issues at the Cancer Center her Wednesday appointment had been canceled and her last appointment moved to today. Normally this wouldn't have been an issue except for the fact that Teddy and I were suppose to be leaving for Boston at 10am....today. Obviously, there was no way in heck that I was going to miss Nina's last day of treatment. I spent a number of hours with United agents and we were finally able to find a flight that had two spots open.....a red eye leaving Santa Barbara tonight at 9pm. We would arrive Saturday morning at 7am and have plenty of time to rest before all of the festivities began.
Teddy was exuberant about leaving for the trip. He tried (repeatedly but to no avail) to convince me that he should stay home from school today. I actually contemplated taking him to a treatment session but after seeing Addie's response (and she is extremely calm and collected, not a bit anxious like Teddy) Todd and I decided that wouldn't be a good plan. Part of the reason I have painstakingly recorded all of these thoughts and experiences, taken so many photos, and video recorded so many events, is because I want Teddy to have this available to him when he is older. God willing, Nina will be the miracle child and if so then she would have this entire experience documented in detail. I want to preserve as much as possible for every one's sake!
Long ago I had decided that I would do something special for Nina on her last day of radiation treatment. The actual details hadn't come together until Nina decided we should have a Fairy theme for Halloween. That is when I decided I would dress up as Queen Clarion, wings and all. Nina and I had always loved playing dress up. For her 5th birthday party, Nina had decided she wanted a princess theme and that I should be the queen. I ended up finding the most exquisite colonial ballgown on Ebay and got completely dressed up on the day of her party. The funnest part was showing up at Nina's preschool in all my queenly glory and seeing her radiant face, full of delight at how silly her mama was! Prior to her actual birthday Nina and I had planned all aspects of the party. She had decided she wanted to invite her 7 best friends from preschool, that everyone should have a princess dress and crown, that we should have a Taco Bell picnic while wearing the princess gowns :), that there should be a manicure, make-up and hair station, that everyone should sit down for a teaparty, and that we should make pink and purple cupcakes. She had every detail planned but never had she imagined that I would show up in full regalia to pick her and her friends up from school! I loved seeing how happy my silliness made her! I knew that at 5 my dressing up as a Queen would be cool, but very quickly it would become embarrassing so I decided to fully take advantage of her enthusiasm. Nina's 5th birthday party was every girl's dream and in retrospect I am so thankful that I did it!!
Princess Nina, Queen Mama, & the Pretty Princesses
Princess Honey-Girl February 23, 2010
The Princess & Her Royal Court
Beauty & the Dada!
So....I decided that today I would be Queen Clarion. As I got all of my accessories together and ironed my fairy dress (another Ebay treasure!) that damn lump began to reemerge in my throat. I have never liked crying....always feel like I lose control when I do so....but these days I cry a ton....daily. I tried to redirect myself by thinking about other things I needed to accomplish before leaving for Boston but nothing seemed to work. However, God's timing is exquisite. Each time I feel fear gaining control over my heart, He intercedes and sends me a bit of hope, laughter, distraction, encouragement...sometimes all in one. As I ironed my dress, my phone buzzed with an incoming text. I looked down and it was my friend Mario checking in about coming by and dropping off Teddy's birthday present. Mario had helped me track down Teddy's gift the night before and had sweetly offered to drop it off in the morning when he wasn't around. Mario has impeccable timing for making me laugh so I was relieved that he was coming by.
A few minutes later, Mario showed up with Teddy's birthday gift and a quart of cotton candy ice cream :) Nina will forever think of him as her Cotton Candy Ice Cream Man....Mario doesn't seem to mind :) Upon seeing me in my Queen Clarion costume Mario burst into laughter and my lump evaporated.....at least temporarily. When Nina saw me in my Queen Clarion costume, she didn't burst into laughter but smiled from ear to ear....beamed with giddiness! She loved it and I was so happy!!! Thankfully, Nina got into the car without a single complaint. Unfortunately, I realized then that we had forgotten to get her stroller out of Todd's car the night before so I called him informing that I was going to quickly stop by. Of course we'd forget her stroller on the last day of treatment...it was fitting given how insane our lives had turned. We raced down to Santa Barbara Junior High where Nina proudly shouted out through her window, "Mama's Queen Clarion!" I hadn't told Todd either. He was happy for Nina and I could tell he loved seeing the brilliance in her eyes. Nina kissed dada goodbye, we got the stroller and were off.
When we arrived at the Cancer Center, Nina just had a permanent grin on her face. She loved, loved, loved the fanfare the receptionists made when they saw me in all my fairyness! My wings were so wide that I had to slip through the doorway sideways...she found this particularly entertaining! As we rounded the hallway corridor, we heard someone say, "They're coming!" We turned another corner and what did we find but all of the nurses and staff crowded around a beautifully decorated hallway and in unison they shouted, "Surprise!" To our astonishment, they had decorated the entire hallway and the treatment room in white tulle and sparkling lights. Cindy was wearing a Tinkerbell flower and some of the nurses had glittering necklaces. The piece de resistance was a phenomenal table covered with layers upon layers of hand-decorated cupcakes, cakes, chocolate covered strawberries, and cookies. The entire place looked like a bridal shower. Nina gasped an audible, "AHHH!" when she saw the beauty in front of her. The love these women had for her was so thick it was palatable.
Nina surrounded by the amazing staff at the SB Cancer Center
Queen Clarion (wearing her hand-made crown) and our Guardian Angel Cindy
Amazing Decorations!
Treats fit for a Fairy Princess!
Cindy, Nina & Mama....Happy & Blessed!
For 6 weeks, Monday-Friday Nina and I had spent our mornings with these wonderfully generous people. The fact that they had taken the time to demonstrate their love for our daughter in this way was overwhelming to say the least. Nina could not stop smiling and even agreed to take photos. Then Cindy told me she had a gift for me. She pulled something from behind her back and I was left speechless....she had made me a crown to match the one that Queen Clarion had in the Tinkerbell movies. For weeks she had heard Nina and I discuss all the crowns available on-line and how none of them really resembled the crown in the movie. Apparently she and Nina had decided that she would make me one! It was perfect...just like the one in the movie! For what seemed like a very long time I couldn't say anything...I just starred at the crown. Cindy put it on my head and I hugged her tightly....then I started to sob...so I did what I always do....ran and hid in the bathroom! I just sat there (not on the toilet....thankfully they have a chair in there!) and cried. I was so thankful for the gifts God continuously provided during this journey but the beauty and amazingness of these gifts sometimes made the pain more piercing!
I composed myself just in time to hear another roll of laughter. I wiped my eyes and went outside to the hallway where I found my dearest friends Crystal and Sharon....all dressed up too!!! Sharon had dressed up as a crazy cowboy and Crystal a pirate! Nina was just grinning from ear to ear! Children are always amused by adults acting silly and there is nothing sillier than a fairy, a cowboy, and a pirate!! After hugging Crystal and Sharon, I found Cindy and gave her a big hug. I thanked her for my crown and explained how much it meant to me. I knew she didn't need those words....she had come to know me very intimately over the course of treatment but I've decided that it is imperative to let people know how important they are to you....you just never know if you'll see them again so why postpone what should be said now!
The Cowboy, The Fairy & The Pirate (sounds like the start to a really bad joke!)
The anesthesiologist came into the room a few minutes later....wearing a crown!!! Amazing!!! Every single person we have met at the Cancer Center has been delightful! Pretty inspiring how cheerful, giving, and enthusiastic everyone is at the center given that they in essence work in a living morgue! I've come to recognize just how incredibly gifted each and every single person here is and I praise God for them!! I pray for only continuous blessings in their lives!!
After all the fanfare simmered down, Nina left for treatment without a single complaint. I imagine it was pretty funny to have me in my fairy attire sitting in front of her and talking to her until she fell asleep! Precious honey-girl!
Although the morning and arrival for treatment went flawlessly, recovery was an entire other story! Once Crystal and Sharon arrived, I asked them to start videotaping the entire morning. This was the last day of treatment and I wanted every second recorded. I don’t know why…I probably won’t ever watch these videos. I guess I just want to have the option…the choice of reliving these events. There is security in knowing that events can be preserved forever, and available for us to hear and see in a way that our memories can never replicate. Well….if preservation of events is what I wanted well I got it today!!! When Nina woke up from sedation my sweet and happy girl had been replaced by a venomous serpent! She screamed and cried like nothing I had ever seen!!! The poor baby was over it!! She had held it together with amazing grace for 6 weeks and it was now all coming out!! I reminded myself of what Dr. Weisenberger had told her…. “Nina don’t let anyone control your emotions!” My heart broke and raced simultaneously. I felt dizzy and overwhelmed because there was nothing I could do to help her. I tried to redirect her and be funny but if just pissed her off even further! Then it happened….she was so angry…shouting that she wanted to go home….trying to rip her way out of the bed. Nothing worked so she did what anyone pushed to their limit would do….she reached for my arm and bit me!!! She latched on and didn’t let go for probably 5 seconds. It hurt like a bloody $%&*#@. Luckily, I have been bit a lot in my professional career so I’ve learned not to respond at all. I just waited until she released a bit then pulled my arm back. I looked at Crystal who was video recording and her mouth was agape! Sharon just flashed me a I’m so sorry but you didn’t respond good for you! look that only another behaviorist could give. Nina screamed and cried for over 20 minutes. It was awful!!! Just awful!!!
Then we had the brilliant idea of asking her if she wanted to sit in her stroller. She nodded in between screeches and within another 3 minutes was completely calm. Why we didn’t think of this earlier I do not know! The remaining 20 minutes of recovery were bliss. She happily watched Tinkerbell, ate cupcakes, drank tea, and took pictures!! In all honesty, I cannot blame her for losing it. She held it together beautifully for 6 weeks….better than most adults would. She had suffered and it all came out! In a way, I wished I could be like her and really let the world know how I felt…how I was torn up inside. Instead of tantrumming, I did what I do best…I waited until Nina was happy with Crystal and Sharon and then I went and hid in the bathroom and sobbed. I sobbed and sobbed. I sobbed because this last treatment marked the end of a stretch of this journey. I had grown comfortable here. Here things seemed stable. Now I didn’t know what would happen…how much time we had left. I sobbed and sobbed wondering if God was listening to our pleas for a miracle. Then my friend Jimmy sent me the following message:
“I know I’m not religious but I pray every night and believe in a higher purpose and reason with all my heart. I don't know why this is happening and why it is so hard. I'm so sorry to hear your pain and I will pray for you.”
I read this message and wept! God was listening to my pleas. He was working miracles all around me, I just wasn't paying close enough attention. He was using Nina to touch people, to call people to Him. Because of Nina, Jimmy’s heart was being softened towards God! He was praying, even going to church! This WAS a miracle! I cried and I praised God!!!
When I came out Cindy found me and gave me another big hug. I started to thank her but then a flood of emotions came out again. Aghhh!!!!! So….back to the bathroom I went and cried some more. I didn’t want Nina to see me upset but it was so hard to contain! Cindy knocked on the door to see if I was okay. I washed my face and came out. She asked me if she could pray for us and I nodded, knowing that if I said another word it would be covered by sobs. Cindy prayed over me…asking the Father of Heaven and Earth to cover our family with grace and peace. As she prayed, I cried and she cried. God knew that we would need Cindy and He gave her to us! Throughout this entire journey God has provided the people that we needed to walk each step with. God’s love and mercy is boundless, endless, and ceaseless!
After Cindy prayed over me, I was able to pull it together. We took one last picture with Nina and hugged our Cindy one last time. Sharon and Crystal walked us to the car and helped us load up. Then Nina and I did what we do best together…shopping! Nina wasn’t in love with the dress I was going to wear to Eileen’s wedding so she and I went to Nordstrom’s where she picked this exquisite gown that I would have never chosen for myself. Apparently Eileen, Nina and Addie thought my wardrobe was too “momish” whatever that means!!! Some of my favorite outfits have been chosen by Addie and Nina so I decided to follow my personal fashionista’s advice and buy the BCBG dress J She was very proud of herself! After shopping we went to Kahuna’s for a hotdog to celebrate. While we ate, Nina turned to me and said, “Mama I’m all done with treatment!” I kissed her pudgy cheeks. She was right! I was happy for her happiness but sad for my sadness!
After our late lunch, we joined Todd and Teddy at home! Teddy was coming unglued with excitement. Nina never said anything but I knew she was disappointed about not going. Earlier in the week, Addie had the brilliant of idea of coming down with her dad and Dan. Dan and Todd’s brother, Joe, had decided the previous weekend that they were going to come down while Teddy and I were in Boston. Brilliant Adelae recognized before any adult that her presence would make the weekend away from me easier for Nina! When she told me her plan we were all like, “Duh!” So Nina was ecstatic herself for Addie’s arrival. We called them to find out where they were and discovered that they’d be arriving at 6pm. Perfect timing! Right before we needed to go.
The four of us had dinner and afterwards I had Nina jump into the tub so she’d be all clean and cozy before Adelae arrived. Just as Nina climbed into the tub…Addie arrived J Nina was deliriously happy! I could have left at that moment and she would have been just fine J Thank God for Adelae!
We finished bath time, loaded the car, and hugged everyone goodbye. Then Todd dropped Teddy and I off at the airport. Teddy was like a puppy…so full of energy and excitement. He rolled his carry-on into the terminal, took his shoes off at the security check point, proudly told the TSA that the Macbook was his and that Dr. Eduardo had given it to him as a present. Excitement does not do justice to the happiness Teddy was experiencing. I was elated to have him all to myself. We had taken a mama-son trip to Boston when Teddy was in kindergarten. During the last 6 weeks I had tried to spend as much time with Teddy as possible but he knew that things were different. They were! I had always taken him to school and picked him up. I had always made his lunch and arranged his play-dates. Now Todd had taken over and it was different! I just hugged my boy and took a ton of pictures with my phone. He had no problem hamming it up for the camera!
Rebel Without A Cause!
Waiting for boarding to start....waiting....and waiting!
Finally on board!
We were suppose to leave Santa Barbara for LAX at 9:05. We had a connecting flight to Boston at 10:30. Around 8:30 the agent came on the loudspeaker and announced that we were experiencing a delay in boarding because of mechanical problems with the airplane. Aghhh!!! 8:45 came and went and nothing. Then finally at 9:15 we boarded. I had a bad feeling that we weren’t going to make it. When we arrived at LAX it was 10:35. We jumped out of the plane and ran down the terminal trying to make it to Gate 71A. We ran like the wind, Teddy pulling his camo suitcase and me yanking my red one. We arrived at Gate 71A at 10:40! We missed our flight by 10 minutes! The agent tried to see if they’d let us on but they were already off on the tarmac!!! Poor Teddy just collapsed on the chairs and asked what would happen repetitively. Given how crazy the past 10 minutes had been it was perfectly acceptable that his anxiety was going through the roof! Eventually we were given tickets for an 8:30am flight the next morning that would put us in Boston by 5pm L At least the wedding was on Sunday! I texted Eileen and told her the bad news. Then I texted our family and friends and said that I thought I should have my own reality show and that it should be called R.O.S.Y (Really Outrageous Shitty Year!). Although everyone laughed it was pretty much a consensus that the name fit! Now I just needed to find a television network that would be interested in recording my demise…shouldn’t be too hard to find in LA!
Missed flight...on our way to the hotel shuttle!
Teddy and I arrived at the LAX Westin by 11:45pm. Teddy loved the hotel! He was impressed by the “beautiful white linens”!!!! What almost 8 year old uses the word “linens”??? Teddy is such an astounding creature! We brushed our teeth and climbed into bed. He wrapped his skinny little legs around mine and asked, “Do you think we’re gonna make it tomorrow mom?” I reassured him that it was going to turn out alright. He yawned and snuggled up closer, allowing me to kiss his perfect lips. Sleep was setting in but before he let it consume him he barely pushed out, “Mom, you got the alarm set?” I laughed and kissed him again! Even at midnight, with the heaviness of sleep encroaching, my little man needed to remind me not to be an airhead! How I love this boy!!! How I thank God for the treasure he is in our lives!!
I find myself being way more thankful for the small things....things that otherwise I wouldn't been particularly excited about or grateful for. I feel like everything in my life has been divided into two separate dimensions: Before Cancer.....and.....After Cancer.
Before Cancer I wouldn't have really been thankful for Teddy getting ready for school without complaining, or the dog not piddling in the house because I forgot to take her out for a walk for hours, or for Todd cleaning the kitchen. I would have just expected these things and if they actually happened I would have nodded my head in recognition that things were as they should be. However, I would not have been necessarily thankful. If these things did not happen, I would have been extremely irritated and annoyed. Strange how I'd be irritated and annoyed but not really thankful? Seems backwards now!
After Cancer I find that it is much easier for my heart to be thankful. I am extremely thankful (and relieved) for Teddy getting ready in the morning without complaining, for Mel keeping it together, for Todd being helpful, for Nina sleeping well, for movie night with fresh popcorn and melted butter, for surprise deliveries of cotton candy ice cream, neighbors sharing warm right-out-of-the-oven chocolate chip cookies, text messages saying hello, for giggles in the middle of the night, and most of all unexpected hugs!! I always knew that having a thankful heart was important but I did not realize how VITAL it actually is for every aspect of life. Now I do and I try to remind myself of that on an hourly basis, especially when I am extremely tired.
This morning was uneventful (finally!). I took Eileen to the airport at 7am. Our excitement (and my anxiety) for the wedding in Boston had grown over the course of the week. Tomorrow Teddy and I would be leaving and we'd get to spend a wonderful weekend with our dearest friends. Teddy woke up in an a great mood, super excited about our upcoming trip. For being anxious, Teddy loved to travel. Teddy has a great sense of adventure, he has since he was a tiny guy. For this trip, he was particularly excited about taking his very own carry-on suitcase on board the plane :) Sometimes his sweetness and innocence just leaves me breathless!
Right before we left for treatment, Eileen called to say that her flight had been delayed. I was super excited because that meant she would get to spend one more day with us in treatment. I packed up all of our gear (which today included oatmeal, fruit salad, and yogurt all ready for when the Queen awoke!) and we picked up Eileen at the airport before arriving at the Cancer Center. As I finished parking I looked at the dreaded special "T" parking sign which reserved parking for cancer patients. All of the sudden I felt a growing amount of trepidation. Tomorrow would be our last radiation treatment but for as much as the fasting was a nightmare and I was ready for Nina to have a break, the last day of radiation treatment also signified that we were entering a new chapter of this journey, one that I really preferred to avoid altogether!
For the most part, Nina complied beautifully. The only thing she complained about was being weighed. She had grown to really dislike this activity. I assumed it was because the scale felt a bit unstable and she now avoided anything motorically that seemed insecure. Irrespective, we got everything done that we needed to and both Cindy and I reminded Nina of how proud we were of her. She didn't say a word...not even a stink eye...the girl has the best poker face in town :)
Once the anesthesiologist arrived and we made our way to the treatment hall, I decided to video tape this portion of the treatment procedures. During the past 5 1/2 weeks I had videotaped practically everything but when she got sedated. I decided that now was the time and that I would video this little piece of the journey. My favorite thing about Nina's ability to cope with treatment is how she uses her words to describe what she is feeling, fearing, wanting, and needing. Nothing illustrates this gifted spirit better than her saying that things are "Wiggly" after she is given Propofol. My stunningly smart girl has a way with words! In fact, both my children have this gift and I pray that they never lose it!
Eileen ended up leaving at 11am. Nina and I went to the La Cumbre mall and had a lovely picnic of Panda Express before picking up Teddy from school. Teddy could not stop talking about Boston....I mean Lexington. Actually we were calling it our Lexington trip (that is where Eileen and Dave live) as to avoid upsetting Nina since she had been begging to go to Boston lately :(
After school, we went to our friend's the Katzs for a play-date. Teddy and Trevor are the same age and attended kindergarten and 1st grade together. Nina and Justine attended preschool together for two years. Nina was ecstatic about going on a play-date. All the way to the Katz's house she kept saying, "I'm so excited to play with my friend!" Before leaving to pick up Teddy she had even reminded me to pack up some extra Halloween cookies I had bought so she could share them with Justine. We had a wonderful time at our play-date. The only problem, according to Nina, was that I always make play-dates too short :) That's my girl!!
When we got home, Teddy continued his enthusiasm for our upcoming trip :) All he could talk about was packing and what we were going to do. He packed his suitcase with his Nintendo DS, games, activities, and snacks. I love how he is a planner...it's just that he planned to take everything he needed except for clothes :) My sweet little man!
Dinner was quiet but the four of us needed some quiet family time. Once again, our incredible friends prepared an amazing meal and we delighted in it! I can't explain what a relief it is to not have to deal with organizing and preparing meals during the week. It just allows us to concentrate more on Nina and Teddy! Right before bed Nina reminded Todd that tomorrow was her last treatment with Cindy. Todd kissed her on the forehead and told her he was excited for her and how proud he was of her. We were both unbelievably proud and excited for her but we were also left with turmoil about what would happen next. We continue to pray for our miracle!!
After Nina got dressed for Eileen's wedding, she had to go to the bathroom. When we walked in and I turned on the lights, I turned around to find Nina with the biggest grin spreading across her angelic face. I looked at her and she smiled back saying, "Ahhh....I'm pretty!". I hugged her and reaffirmed her statement, adding that she was beautiful everyday but today it was fun getting to dress up extra special.
I cannot explain how important it was for Nina to be this flower girl. More recently, Nina has been discouraged and upset by her physical appearance. She has looked at herself in the mirror and lamented her situation by saying, "Ohh...I don't like the way I look." or "I don't look the same!". Each of these statements breaks our hearts so for our daughter to not just feel beautiful but to actually verbally comment about it was an unexpected and loving gift to wittiness.
The following photo of Nina and Eileen is my favorite of of the entire wedding (sorry Dave :)) in Santa Barbara because it captures the love that Eileen and Nina share for each other, but also because Nina does feel absolutely radiant there in her satin gown next to Eileen!
At 7:45 am my phone rang and woke me up from a deep sleep. I didn't recognize the number so I didn't answer. If you are not listed in my phone, chances are very low that I will pick up. I snoozed for another 10 minutes then listened to the message. It was Cindy from the Cancer Center canceling today's appointment because of electrical problems with the radiation machine. I was so bummed!!! Tomorrow (Thursday) was suppose to be Nina's last radiation appointment. She hadn't stopped talking about it all week long. Now with this cancellation she would have to go in on Friday. Dang it!!! What was worse was that Teddy and I were suppose to leave for Boston on Friday am to attend Eileen and Dave's formal wedding. There was no way I could miss Nina's last radiation appointment!! Now I would have to deal with the hassle of changing our tickets! Aghhh!!!
After listening to the message, I texted Eileen, who was already up (jet lag). I updated her on Cindy's call and told her I was going to sleep in with Nina. It felt great to sleep in...for 15 minutes. Nina woke up early! Of course she did! The one day we could sleep in during the week and she wakes up early! I should have predicted it :) She rolled over and whispered "Can I get up now?" I told her that the appointment was canceled and that consequently we got to hang out and have breakfast. I had told her about breakfast hoping it would ease the pain of continuing treatment until Friday a bit...but it didn't seem to matter. She didn't cry. Instead...she plugged her nose and said, "Mama, I don't like your smell!" Isnt' my lady lovely??? Apparently, she did not appreciate my morning breath :) I cracked up and shouted out to Eileen who came in and joined in the laughing. Eileen and Nina decided to go into the living room and watch some cartoons and eat breakfast while I slept for a bit longer!!! It felt so good to sleep a bit more!
I rolled out of bed around 9:45 am. I joined my critic and Eileen on the couch. We unanimously decided it was going to be a "Whatever" day and just rolled along, doing only what we wanted, which was mainly hanging out at home....and it felt so right!! Our friend Kelly came over with Totoro, another Japanese animae movie. Nina totally loved it! I loved it too! I think she and I relate to the quirky characters in these movies, whereas Teddy just finds them odd :)
After picking up Teddy from school, we brought home a few smoothies from Blenders. Nina was happy to drink one, even though it was doctored up with Miralax. After Blenders, Teddy and I worked on some of his homework. His reading has greatly improved and he is definitely showing a preference and easier time with math! He is not even 8 years old yet (a couple of days more) and he already at times thinks he knows more than me and Todd. Ohh...little man...you have so much to learn :)
Once dinner was complete, Eileen and I escaped for an hour and had drinks to celebrate her upcoming nuptials. I am so happy for my dearest friend. Love is hard to find but Eileen had found it! We had our drinks and didn't stay gone for long. Eileen wanted to return home and spend her last night this month in Santa Barbara with Nina. I love how everyone is savoring every second with her! She is something to be savored...but then again...aren't all our children??? I think we just forget sometimes :(
