Day 181

Monday February 14, 2011

I woke up early, worried that Teddy would have a hard time getting out of bed, wake up crying or resist going to school all together. However, none of my fears were validated. Teddy woke up in the most incredible mood. Of course it may have helped that I woke him up by massaging his back, "Mom you're the best massager in the world!" When I took him to school he asked, "Are things bad?" and I replied that not yet. He didn't cry. He just nodded matter of factly. Teddy is doing exactly what a healthy person does; he shares his emotions, gets sad, gathers fact, and presses forward. Teddy is my hero!

Nina had another miserable night of no sleep. She tossed and turned and could never get comfortable. She woke up in a disastrous mood of course and nothing could make her happy. My poor parents did everything they could to brighten her mood but nothing worked. Then around 10:30am, Mario arrived with a surprise.....a giant Patrick Pinata! The look on Nina's face was nothing less of spectacular!!! She beamed with joy!!!! For weeks we had been pouring all over the internet trying to find the perfect Patrick pinata for her upcoming birthday party. She didn't like a single one. Apparently, Mario had the one he bought custom made in Bakersfield when he went to visit his family. My parents were so happy to see Nina's joy!!! I was so happy to see Nina's joy. We are all willing to do whatever it takes to bring her happiness!!! Before leaving, my mom turned to Mario and said in her beautifully thick Portuguese accent, "Thank you for making my granddaughter happy!"

Nina was most definitely happy. She turned to Todd and said she wanted to buy candy to fill Patrick. First she was made that we couldn't take his head off to make candy insertion easier but she quickly recovered and they spent about an hour filling that ginormous beast up!!! I'm not sure a rope is going to be able to hold him up!!! After lunch, Yael Brennan brought chubbster Mattie over to love on Nina and she also helped with the fattening of Patrick. Nina was so happy! We were all happy!

After school, Yvonne arrived to spend the beginning of the week with us and I took Teddy to get a hair cut. He was not happy because he was worried the hairdresser would cut it too short. In actuality this was his first haircut. Todd has always buzzed his hair but now Teddy wants to let it grow out. When the hairdresser was done, Teddy was stoked and I was thrilled not be looking at Chewbacca any longer :)

Today was suppose to be Valentine's Day and for the kids it still was. They enjoyed opening their Valentines. Teddy's classmates made Nina her own Valentine's bag and filled it with goodies. When Teddy got home, he sat down and helped her open them all. Then Teddy made us hand-made Valentines . He is the sweetest boy!!

We spent the rest of the night trying to make Nina comfortable and happy. We were desperate. We gave Molly a bath, rented movies, made popcorn, did whatever we could but nothing seemed to help!

At bedtime, Nina wanted Todd to sleep with her downstairs so he did. I put Teddy down who fell asleep instantly. I went to bed with a sense of dread.

Breathe

I have always been able to use words to convey what I am feeling, thinking, and experiencing. Every one who knows and loves me knows that I am probably the world's most verbose person. But there are no words to express the horrifying pain we all went through today.

As it turns out, both of our families and are most dearest friends were here with us today. Tomorrow we are planning on celebrating Nina's birthday (which is on the 23rd) and everyone had planned to come up. Unfortunately, perhaps I should say fortunately, every one came when Nina fell off the cliff.

We spent the day, huddled in our condo, watching our honey-girl begin her downward spiral. By 2:30 pm, we had to start Nina on oxygen because her breathing was so labored! She was miserable beyond misery because she couldn't swallow or breathe properly!!! All of the challenges are neurological. There is nothing wrong with her lungs or respiratory system....it's just that the tumor is compressing her brain stem in such a manner that the signals are all decimated, making her feel like she can't breathe.

We decided to increase her medication substantially and Dr. Greenfield made a house call around 8pm to deliver some morphine patches. I put one on Nina right away. The good news is that she is now comfortable. She can breathe and is not miserable!!!

She can breathe so I can breathe!

She Has Fallen Off The Cliff

As I write this, Nina lays quietly sleeping but today was not a peaceful day!

Today Nina fell off the cliff.

Today we fell off the cliff.

Today was the day we have all been praying would not come.

Today hour by hour Nina slipped further and further away from us.

Today Nina started having major difficulties breathing.

Today Nina can barely swallow.

Today Nina said that her spit was stuck in her neck (the worst possible indicator!).

Today death planted his hideous, monstrous being next to my precious daughter.

Today I am dying slowing myself!

No Words Necessary

When I look at this photo Sosie took all I see is LOVE!!! Nina is well loved!!!!!!! 

Smack

Nina fell asleep with Sosie around 12:30am. She had a restful night of sleep in spite of periodically sounding like she was struggling to swallow her own spit. I slept over head on the couch, watching her. She seemed like she had difficulty swallowing, like when you have heavy mucous from a cold. Then she'd start coughing to clear her airway! At one point, Sosie rolled over and caressed her face ever so gently right after Nina coughed. What preciousness before my eyes!!!!

Around 1:30am I sat next to Nina and just watched her sleep. I watched her breath peacefully, watched the tiny line of drool fall from her mouth, and watched her beautiful pink lips quiver as she dreamed. I watched her for a long time in the stillness of the night. I assumed she was sound asleep. Well, you think I would have learned by now NOT to assume a thing!!!! So....I did what any mom in my shoes would do, I kissed my honey-girl's arm, but instead of being met with just the perfection of my sleeping daughter I was met with a PHWACK!!! Out of the blue, Nina smacked in the head and growled, "Don't kiss me!" I just laughed quietly!!! That's my girl....my fierce fighter!!!! How I love her!!!

Day 180

Sunday February 13, 2011

Holding Teddy's gifts as she sleeps in!

Teddy woke up in the most excellent mood ever!!! My folks got up and went to Vons to pick up supplies for breakfast. The girls were fast asleep. Nina had woken up about every 3 hours. This time she didn't stay awake for very long, maybe a few seconds. It reminded me of our summer before she was diagnosed. The first symptom we noticed was sleep disturbance. Summer of 2010 seems like a lifetime ago. I feel so old and depleted, like I'm running on empty but yet have 5,000,000 miles to go.

As I lay on the couch, I heard Teddy stirring. I went upstairs and crawled up into his bunk bed. He didn't say a word, just lifted the covers so I could lay next to him. Instantly his little legs were wrapped around me and he had his face nuzzeled in my neck. "Good morning love bug." I whispered into his ear. He pulled back and gave me the biggest smooch, "Good morning gorgeous!" I burst into laughter and so did he. We cuddled for about 15 minutes before I reached over and turned on iCarly on his laptop. Eventually the smell of bacon sizzling downstairs beckoned loud enough that we couldn't resist :)

Napping and holding hands with Mama

We had an amazing day!!! I was convinced when I had gone to bed that Teddy was going to be depressed and severely upset today. He had spent the majority of Saturday crying off and on. He must have pulled me aside into a bedroom about 3 times to ask me a question about Nina's illness and then burst into tears. On Saturday this most precious of boys had grieved exactly like we have and it killed me! But today, it was like he was filled with an overwhelming spirit of joy! When Nina woke up he ran to her side and hugged her. Everything she wanted he insisted on getting. Whenever she yelled at him and tried to smack him he laughed and took in stride, noting that it was okay and that he could wait until she was calm!!!!!!!! We all watched the miracle before our eyes!!! Quietly I thanked God.

While my folks finished preparing breakfast, Teddy pulled me into Nina's room and closed the door, "Is she dying now? Is it happening right now?" My heart sank. I hugged him and reassured him that she was fine now and that we would tell him when things got bad. He squeezed me back, relief noticeably spreading over his body. I thanked him for not saying anything in front of Nina and asking me instead of worrying. As we cuddled on the bed, Nina kept shouting for me, "Mama come here!", "Mama, come right now!" I shouted back that I needed a moment. She did not like that response at all and said, "Mama come here right now or I'm going to kick your butt!" Teddy and I burst into laughter and with that, he was out the door. I went to the Queen's side and asked her who she thought the boss around here was. Without missing a beat she said, "Me!" with all the authority in the world. My folks, Sosie and I just laughed hysterically. By this point it was mid morning. Todd had slept in but all the commotion and threats of violence must have woken him up. When he came downstairs, he was greeted with sugar from Nina :)

I went into the kitchen and hugged my sweet folks. How I love them! We talked about Teddy's amazing strength!!!! Tears welled in our eyes and we watched him pour sweetness over Nina! We all crave information. No one wants to be left in the dark. Teddy has known Nina was severely sick for a long time and he has worried that she might die. I understood the calm spirit that now rested in him. He knew the game plan. He was part of the game plan to the fullest degree and as strange as it sounds that brought him comfort. I understood all too well!!!

While we got ready for the morning, our friend and Nina's pediatrician Dan Brennan stopped by for a short visit. I was upstairs getting ready but Todd and Sosie told me that upon seeing Dan, Nina immediately scolded him, "Your boy Andy said I have chubby cheeks!" Oh my goodness does the girl have balls!!! Back in December when the Brennans had come over for dinner, their 3 year old had very matter of factly stated that Nina had chubby cheeks. She had never forgotten this injury!!! She had been slighted and now she was saying something about it! True to form, Dan didn't miss a beat and apologized, explaining that they all have big cheeks in their family so it's really more like a compliment :) When Sosie told me this story, I burst into laughter. Nina would take on the President of the free world if he bugged her!!! What a hoot!!!

Sweetness

After breakfast, Teddy proclaimed that we needed to do something. So.....we all showered and got dressed. Nina loved her wagon. She physically felt comfortable in it versus feeling trapped and squished in the stroller. Consequently, she was eager to go shopping for shoes and dresses. Teddy jumped into my lap and asked if we could go to a toy store so he could use some of his allowance money. I suggested Kernahan's

Man, was I ever right. Nina went full on nutso on me. All the way to the mall she screamed and hollered, calling me names. When that didn't work to get a response from me, she proceeded to state that Teddy was stupid. I got very firm and told her that Teddy adored her above all things and that I would not tolerate her being mean to him. I warned her that if she said something mean to her she'd lose all of her stars and allowance money. That pissed her off!!! "You're stupid Mama!" she yelled at me. It was practically impossible for Sosie, my mom and I not to laugh!!! We avoided eye contact with each other because we knew that we wouldn't be able to contain ourselves. She proceeded to insult me a couple more times. When I didn't respond she said, "Mama don't you know how much I love you? Don't be mean to me!" I melted and told her that I loved her dearly but that she still couldn't be mean to Teddy!

Nina wasn't mean to Teddy at all. She behaved at the toy store and hung out in her wagon. She seemed so fragile laying there :( After the toy store she said she didn't want to go clothes shopping but wanted to get lunch. After a round of tossing around lunch ideas, she settled on CPK. At the restaurant, the sweet girl tired to sit in the booth but couldn't get comfortable. Nina is in misery. It is written all over her face and perfect strangers can see it, I see the sadness reflected in their eyes when they look at her.

During this entire time, Sosie and Teddy were delightfully upbeat and positive! I couldn't thank God enough! They are so strong, so loving, and so precious!!!!!

Playing around at CPK

Vovo pulling the wagon...yummy vanilla ice cream!

Hanging out at Paseo Nuevo....just relaxing under the beautiful Santa Barbara sky

We spent the afternoon out on State Street and wrapped up our day by watching a movie with my folks. Teddy sat on my dad's lap while Nina tried to get comfortable. One second it was too cold and the next she'd insist on us opening the sliding glass door because it was too hot. Poor baby!!! We all sat in the dark, watching the movie, hearing Nina suffer, praying for our miracle!!!

Day 179: The Heart of A Warrior

Saturday February 12, 2011

Throughout the past week, I've had a growing pang about Nina and that we needed to give Teddy more information. He's known all along that she has a tumor in her brain that is making her extremely sick and that we are hoping and praying for her to get all better. What we've been torn about was first burdening him with the heaviness of the tumor being "terminal" too early where all he would focus and perseverate on was her dying and because we refuse to give up hope that she will be healed. Secondly, and most importantly, we have been very worried about him accidentally saying something about her dying to Nina. We do NOT want to burden Nina with that fear. She knows that she is sick. She is struggling. But she is an almost 6 year old little girl. Even though she loves God, death to her means being taken away from mommy and daddy. From the beginning, Todd and I agreed that we would do everything and anything to keep that fear for Nina.

However, we are also painfully aware that Teddy needs to know what is happening so he can prepare himself. On multiple occasions this week, Todd and I talked about how to handle breaking more of the news to Teddy. We decided we would systematically tell him more details, first by telling him that the medications weren't working and that is why she is getting sicker. We also agreed that we would follow his lead and answer all of his questions. Mid week when Brandi had decided to come spend the weekend with us, Dan had invited Todd and Teddy up to Petaluma for a boys weekend get-away. I had really encouraged Todd to do this because Teddy has been yearning for more one-on-one time with his daddy. Initially Todd had thought this was a good idea but on Thursday night he decided he didn't want to be in a 6 hour car ride with Teddy where the likelihood of these questions coming up was almost guaranteed. So we agreed that I would talk to him either Friday night or Saturday morning.

I ended up deciding Saturday morning would be best because then he would have the rest of the day to process the information and talk to us, versus having to go to bed and having thoughts mull around. After breakfast Teddy and I went to Best Buy to buy the Halo game he had earned. We then walked across the parking lot to Anna's Bakery and bought some treats and a drink.

The day couldn't have been more glorious. The sun was shinning, the sky a perfect crystal blue, and there was tiny breeze keeping it all perfect. The art walk aslo being held that day so the marketplace was hustling and bustling more than usual. We were surrounded by children playing, adults sipping their Starbucks, and a very loud man playing his guitar and singing (more like belting) songs a tiny bit off key. In fact, when we found a table in a corner, removed from the hustle and bustle, Teddy and I actually started to make fun of the man slightly. The guy was relentless. Each person that walked by would end up with him following them, serenading them even louder! The guys was eccentric and Teddy found him to be hilarious, especially the looks on folks faces as he practically got nose to nose as they walked by :)

We started eating our snacks and for a long time talked about school and his buddies. Then I suggested we go to Sportsmart to see if they had a wagon for Nina since she no longer fit in her stroller. That did it. He turned to me and asked if the medicine was working and I responded no. He went pale and immediately but his juice down and in an elevated tone said, "What do you mean no?" "Is she dying?" I knew that he would probably ask me this question. Teddy is an insightful little boy with the world's biggest heart. He has been mourning the loss of his Nina, the little sister who ran around with him, played with him, bantered with him, since August 19th like the rest of us. However, nothing can ever prepare a mother to hear her son ask those words...."Is she dying?" For a few seconds I sat there quietly. He looked at me, blue eyes darkened, fearing growing on his precious face, and muttered, "Mom tell me the truth!" I reached for his hand and said, "Yes, she is dying honey!" Those were the single worst words I have ever uttered in my entire life!!!!!!!!!!!!!!! Teddy screamed!!!!!!!!!!!!!!!!!!!!!!!! "NOT MY SISTER!!!!!!"

Instantly I pulled him into my lap. He wailed and screamed and pleaded!!!! Over and over again he said, "Not my little sister. Oh God, not my little sister!!!!" "Mom, please tell me that there is hope!" I explained that there is always hope but that we also need to start preparing for the worst, that she is dying and that she may end up going to Heaven!!! His little body convulsed in my arms, tears pouring out of those most precious eyes. No child should have to be going through what Nina is going through, but also no child should EVER have to be going through what Teddy is going through!!!!!!!

__________________________________________________________________________________
The following is a summary of our conversation:

Teddy: Is the medicine working?

Rosy: No honey it isn't"

Teddy: Sorry it's for sure she's going to die.

Rosy: Yes honey it looks like it but we will never lose hope!!

Teddy: But who is going to be my little sister? Who is going to play with me?? Who is going to tell on me?

Rosy: Honey, Nina will always be your sister.

Teddy: But she won't if she's not here.





Rosy: I know honey. This is awful!!! It is a nightmare!! And it's okay to cry and have a broken heart. I am constantly crying. (I just held him tighter, kissing his sweet face, rubbing his little back. All I wanted to do was love him, pour every ounce of love I have for him, so he could know beyond a shadow of doubt that I adore him with every molecule that I am made of!!)

Teddy: But what is going to happen to her?

Rosy: She will go to Heaven and become an angel!

Teddy: (he just wailed, screamed into my chest, little hands wrapped around my neck!!!)

Rosy: Teddy, just let it all out. You can't keep any of this sadness inside. You need to talk to me and dad and let us always know what you are feeling. We will get through this together, each step!!!

Teddy: This is terrible!!! (wailing and sobbing!!!) How could this happen to my little sister, not my little sister!!!!!!! Why Nina????

Rosy: Honey, you are right. This is the worst thing that could ever happen. This IS the worst thing that will ever happen to you. There will be other things in your life that hurt you and disappoint you but this is it, this is the worst. I am so sorry that this is happening and that you are hurting. We didn't do anything to deserve this, it just happened. We couldn't have stopped it from happening. It just did.

I held Teddy for a very long time as he sobbed, hiding his precious face into my neck, where I could hear every sob, every hiccup, every pained breath.

Teddy: What is going to happen to Nina when she dies?

Rosy: She will go to Heaven and become the most beautiful angel.

Teddy: Who will take care of her?

Rosy:  Jesus will (I wiped the tears from his cheeks and kissed his sweet face).

Teddy: Will I see her again?

Rosy: Yes, honey, when you are an old man and go to Heaven you will see her. We will all see her again. (I pulled him in tighter so he could see my face, I wanted him to be able to make eye contact with me for this part). Honey, you will live to be a very old man. Mom and dad will live to be old people, annoying you with all of our calls when you're a grown up because we want attention. We will all see Nina when we get very old and then go to Heaven.

Teddy: You promise me?

Rosy: Yes Teddy I promise. That is what God promises!

For a minute, Teddy just lay his head on my chest. The sun was warm, people were happily wandering around us, and the weird man was singing "Swing Low Sweet Chariot" (how weird!!!). Then he started to cry intensely all over again.

Teddy: If Nina dies I can never show my face again at school, I can never see anyone again.

Rosy: (I hugged him tightly!!) Oh love bug!!! Do you remember how we've been talking a lot about how life is full of negative things?

Teddy: Yes

Rosy: And that we have two choice as to how to live....we can either be destroyed by these negative things and live sad lives....or we can choose to own our sadness but then decide to step forward, to build happiness with a grateful heart and to bless others. Our choice is going to be to step forward and build happiness and to bless others. Teddy, we will always have a piece of our heart broken but I promise you will a wonderful and happy life. You will never forget your sister but it is okay to also still live.

Teddy: (started to cry more!)

Rosy: (I'm not really sure why Star Wars came to my mind at this point but it did. Teddy loves Star Wars and the analogy seemed like something that he would be able to understand)

Hey buddy, do you remember when Anakin Skywalker lost Padmae, when she died.

Teddy: Yes

Rosy: Did he let his pain and grief destroy him and lead him to the Dark Side or did he choose to be sad and then walk toward the Force and live a good and happy life?

Teddy: The Dark Side

Rosy: And did he have a happy and good life?

Teddy: No a terrible one

Rosy: Right

Now, when Luke Skywalker lost his entire family, did he choose to be destroyed and go to the Dark Side or did he choose the Force?

Teddy: The Force

Rosy: And did he have a good life?

Teddy: Yes

Rosy: Teddy you are the most amazing boy!!!! I have never known a boy to have more force in him than you....and honey, that force is God.

(At the point, Anna Thomat, a colleague of mine, walked up and gave Teddy a valentine's cookie and reminded us both that we are loved!)

Teddy: (cuddled closer to me!) This is the worst day of my life.

Rosy: Yes honey it is! But it is also the day your life will forever be changed!!! Because of Nina you will understand something that most adults don't even understand...that life is precious and to be lived to the fullest.

Honey, do you remember how I've always said that you are amazing and destined to do great things?

Teddy: Yes

Rosy: Well, Nina is going to be the force in your life that propels you to greatness, she will be what makes you reach for things that all of the other kids around you won't dare to reach for. You are destined to do amazing things and your sister will be your inspiration!

Teddy: I understand mom!

(We sat and cuddled for a very long time.)

Rosy: Teddy have you been worried about this?

Teddy: Yes from the beginning. I think about it at night time.

Rosy: I'm sorry honey. Do you wish I had told you earlier?

Teddy: No I wish you hadn't told me at all!

Rosy: I know honey but you are at the heart of this journey and you need to prepare and know everything we know.

Teddy: Mama, can we buy Nina a present?

Rosy: (amazed at his astounding strength and ability to think of caring for his sister!) Of course honey! That is a perfect idea!!! (I kissed him repeatedly!)

(Teddy walked over to a table of hand-crafted jewelry).

Teddy: Can I get her some earrings? She loves earrings.

_________________________________________________________________________________

Teddy picked two beautiful pairs of heart earrings and a gorgeous heart necklace. The artist only took cash so we went to the ATM and I taught him how to use it, which he was super proud of. After buying his sister the jewelry he took my hand and we proceeded to walk to several stores looking for a wagon. Eventually we ended up at Kmart where Teddy found the wagon. This entire time, he held my hand and only whispered to me (barely audibly!). I went along with it, following his lead. If I had to let go of his hand for some reason (to pick up a box off a shelf) he wouldn't immediately grab it the moment I placed the item down.

After we got the wagon into the car, Teddy said he wanted to go home and cuddle with Nina. We
held hands the entire way home. Twice he turned to me, tears in his eyes and said that he loved Nina!! I reminded him of what an incredible brother he is and how no one can make Nina smile the way he can. When we pulled into our driveway, I made sure Teddy understood he couldn't say anything to Nina about her being sick, that she wasn't getting better, or that we are worried she is going to die. His blue eyes pierced my soul as he said, "Of course mom! I'm going to take care of her!"

Inside the house, Teddy was so excited to give Nina his gifts. He proudly watched as she opened and saw her smile grow. She was very thankful and gave him a hug. He then proceeded to tell Todd that the wagon needed to be assembled, then he plopped himself on the bed next to her, touching her arms ever so gently. By this point, my parents had already arrived and had joined Brandi, Sosie and Todd in the living room. Each of us sat in that living room, breathless at the sheer love and grace Teddy was showing his Nina. I have always known that Teddy was made for great things and he is already proving me right!!! What a treasure from Heaven he is!!! And we adore him!!!!

About an hour later, all the girls (Sosie, Nina, Brandi, Inga, Me and my Mom) went downtown to shop for make up. This gave Teddy an opportunity to spend time with Todd. As it turns out, he really needed that opportunity. My dad told me that he sobbed with Todd for about 30 minutes but then afterwards he went on a walk with my dad and was in great spirits.

Our shopping adventure was a blast! Inside Sephora, Sosie painted one of my eyes hot pink and the other electric blue. I don't think she thought I had the nerve to walk around the mall that way but I did with pride. Pus, I told Sosie there would be severe payback :)

Who wants $5 for a ride??

The rest of our evening was a delight. We hung out with Inga pie, watched Beauty and the Beast, laughed at my singing, and of course ate yummy popcorn. At bedtime, I joined Teddy who was crying in bed with Todd. I answered more of his questions and after getting his last answer, he turned to us as he folded his hands and said, "Let's pray....Dear God, thank you for such a good day, help Nina and me and Mama and Dada....we believe in you more than ever, bless us and help Nina get better!"

Teddy is the most incredible person I know!!!!! I am speechless at the greatness of his heart!!! I wrapped him in my arms and told him I wanted to rock him like I used to when he was a baby. He didn't say a word, just relaxed his entire body in my arms and fell asleep.