Thursday, February 24, 2011

Day 188: Sacred Moments

Monday February 21, 2011

I don't know why I did CPR on Nina. It just seemed like the thing to do. With each breath I blew into her precious mouth, I told her I loved her. After a couple of breaths it dawned on me to check her pulse. I could feel a slight heart beat. Todd was calling our families telling them to come asap. I had already texted our friends and told them to join us. Todd came back into the house and I vividly remember seeing the deepest most agonizing pain written across his face. Tears were cascading and he covered his mouth to muffle the gasps that were pouring out. I felt my own heart race, like nothing I had ever felt before.

I must have breathed into Nina about 12 times. I listened for her heart and felt nothing. As soon as Nina exhaled her last breath, I told Todd to come sit with me and talk to Nina. I told her that we loved her, that we adored her, thanked her for being a ray of sunshine in our lives. I reminded her how grateful we were to be her parents, how much Teddy adored her, how her grandparents and cousins loved her to pieces, and how we would all miss her terribly. Todd also told her that mama and dada loved her so much and were so proud of her. I kept kissing her precious mouth and face. I must have covered every inch of her beautiful face in kisses. The last thing I said to her before sitting up was that I was so proud of her, that she had been the bravest and strongest person I would ever know and that now she didn't have to be sad anymore, be in pain anymore, she could just be happy in Heaven and be our angel forever. I remember (as if I were doing it right now) that I kissed her lips and held mine on hers for extra long, trying to memorize the warmth of her precious mouth on mine.

For almost 6 years I have kissed those prefect cherub lips. Up until August 19th I had taken it for granted that I might not always have the privilege of doing so. At the very moment of her death I discovered how truly sacred Nina was, how the very warmth of her body was a miracle. The very atoms that comprised Nina's lips were a miracle!!! I kept my lips on Nina's because I wanted to forever sear into my mind the sensation of Nina's warm lips on mine. I wanted to do this desperately because I knew the coldness I had prayed against for so long would soon take over!

Todd kissed Nina and I reached for his hand. We hugged her together, knowing all to well that it would be the last time we would get to hug our warm Nina.

Our angel on earth was now our Angel in Heaven.

Tears fell from my eyes, but I recall that they were not tears of sadness. They were tears of relief and longing. They were tears of relief because Nina was no longer suffering. They were tears of longing because I now knew for real how much I was going to miss Nina. For 6 months I had speculated about this moment and what I would feel. I had thought about it over and over again, but it had never been REAL. Now it was REAL!!!

At this moment, Dan Brennan walked in and sat next to us. I asked him to check to see if her heart was beating. He checked her pulse then said he needed to go to his car and get his stethoscope. When he returned, he confirmed what we suspected. Her heart was no longer beating. Todd walked outside no longer able to contain himself. Dan walked into the bathroom. I sat alone, caressing Nina's face and hold her precious hands. My mind went blank for a split second.

For months I had pained and toiled about how we would handle this situation with the kids. All along I had thought that if we had to lose Nina we would try to have her die at the hospital instead of at home. Personally I had wanted to keep her at home but I wasn't sure that would be the best thing for Teddy. Just two weeks ago Todd and I had made plans to keep Nina at home as long as possible once we started sedation and then when she was no longer conscious take her to the hospital. I had made contingency plan after contingency plan but never had it crossed my mind that we would lose her so quickly and be unprepared. The kids were all upstairs asleep. I had heard Joe, Silas and Teague use the bathroom a while earlier but Teddy, Adelae and Sosie were fast asleep in our bedroom.

Todd came back in and I told him we needed to wake up the kids and tell them we needed to take Nina to the hospital and that they needed to say goodbye, that they loved her, and give her a hug if they wanted. I asked him if we wanted to go get the kids or stay with Nina. He opted to stay with Nina. I asked Dan if he could figure out if we could take Nina to the hospital and he squeezed my hand before saying yes and walking outdoor.

Teague. I explained that they needed to finish getting dressed and to please stay in the bedroom until I returned with the rest of the kids. We were going to have a quick family meeting.

I then went into our bedroom and woke up Teddy, Adelae and Sosie. I told them I needed them to quickly go potty and get dressed. Teddy asked, "What's going on?" I sat next to him, holding his hand and explained that dad and I needed to take Nina to the hospital and that we needed him and the cousins to say goodbye and remind her how much they loved her. I will never forget how his perfect most precious face went pale when he asked, "Are things bad now mama?" I don't know how I didn't vomit right there and then, but by the grace of God I didn't. My heart shattered all over again, a millions times over and over again!!!!! This was so cruel!!!! Teddy and these kids should not be going through this!!!!!! This was beyond unfair. It was torturous!!!!!!! I pulled Teddy into my arms and hugged like I had never hugged him before. I took his face in between my hands and told him I really needed him to be brave, now more than ever. He buried his face into my neck and sobbed, "I don't want my sister to die!" If I could have torn through Heaven and given my life in exchange for Nina's I would have. I would have thrown myself before the Maker of Heaven and Earth and begged for mercy beyond mercy!!!!!!! But the Maker had chosen to not listen. He had chosen to take our angel instead and now I was left with the destruction before me!!!!!!!!!!! Why had He abandoned us????????????????????????????????

Instantly Sosie knew what had happened. She went pale, tears welling in her eyes. I helped Teddy get dressed and the girls finished quickly as well. We then all piled into Teddy's bedroom where I explained what was going on. I told the kids we all needed to be brave and remember all the good times we had with Nina, what a gift from God she was to us all. I then told them we needed to go downstairs and tell her goodbye and that we loved her and that if they wanted to give her a hug. I then added that after they were done we needed to meet outside and group up so we could go get breakfast.

I went downstairs and asked Todd if he was ready. He was kissing Nina's head and I knew what he was doing, trying to memorize her smell. He said he was, so I climbed up the stairs and asked the kids to come down. I took Teddy by the hand and walked him to Nina's side. I sat down next to Nina's right side (Todd was on her left) and had Teddy sit on my lap. What transpired over the next number of minutes will remain one of the most sacred moments of my life. From my lap, Teddy reached over and hugged his baby sister and whispered, "I love you Nina, I am going to miss you." When he looked at me, his eyes were blood shot, deepened by an unimaginable sadness. Silas was next, he hugged her tightly and told her he loved her. I had him and Teddy sit on the chair directly behind me. Teague walked up and paused. Todd tried to speak, but his voice caught before he was able to say, "It's okay can come up and hug her." As Teague approached Nina, Sosie starting balling, followed by Adelae. Little Teague embraced Nina and then stopped when he pulled back, looking at her as if he was trying to convince himself that was really his Nina, the same Nina he had loved and played with since he was one month old (Teague and Nina were only a month apart in age). Both Sosie and Adelae came to Nina's side simultaneously. Sosie wrapped herself around Nina's neck and kissed her cheeks before releasing the sweetest and most pained sigh I have ever heard and God willing will ever hear. At first, Addie quietly stroked Nina's arm, trying to command herself to manage the pain. She then leaned forward and hugged Nina and in the tiniest of whispers said, "I love you Nina!"

For months I had ached about how to prepare and support the kids for this very moment in time. Never had I imagined it would turn out like this but as I sat there next to our precious honey-girl, cuddly on her bed, surrounded by her brother and beloved cousins, I knew that we had been blessed. My plans were just that...... plans. Nina had died peacefully in her own home in her bed and was now surrounded by the children who cherished her most. Even though I felt abandoned, God had provided and the provision was perfect.

I asked Joe to have the kids follow me outside. I ran out to find Eileen and Mario and ask them to get the cars ready to take the kids to Anna's Bakery. As I walked out, I saw Yvonne and Sander running in. Yvonne looked panic-stricken, tears running down her face. Again, since this day I have apologized to everyone I commandeered but I think that if ever I deserved an all encompassing hall-pass, Monday was the day!!!!! I leaped toward Yvonne and demanded that she STOP. In a forceful tone, I told her to calm down; that we needed to proceed with care and caution with the kids. "Is she dead?" Yvonne asked. Yvonne had loved my children since birth. She and I have cared for each other's children as if they were our own. The haunted look in her eyes reminded me that the adrenaline rushing through my veins was poisoned, that my baby girl was indeed gone, dead. Nina was dead. I had known for 6 months that we were walking down this awful path but now it was real. How could my honey-girl be dead? I had just kissed her a couple of hours ago. Now she was gone.

I had Yvonne and the family follow me into the porch. Joe and the kids were already waiting. Dan came out and told Eileen that we couldn't take Nina to the hospital, that the protocol was to call the funeral home. I asked that he find out if Todd wanted to join us on the porch or stay with Nina. From indoors, Todd said he wanted to stay with Nina. I knew what I needed to do. I leaned up against the condo wall, the same wall Nina had painted with sidewalk chalk, the same wall she had leaned her bike on, the same wall she had she had counted for hide-n-seek so many times, and told every one to gather around. I thanked the kids for being so brave and loving to Nina and explained that even though our hearts were broken and we were sad, we needed to be thankful for all the time and fun we had with Nina during the past 6 years, that she was a precious gift from Heaven and that she was now and forever our Angel. I asked the kids to gather in so we could pray. I closed my eyes and prayed:

"Heavenly Father, We stand here heart broken. Nina has been a treasure in our lives.
 We love and adore her and even though we are so sad, we are thankful for all the 
ways in which she was our gift. Please help us be strong. Help us remember
how special we are to one another and help us to feel love. 
In Jesus' name we pray. Amen."

I then told the kids how proud I was of them and reminded them how much Nina loved each and every one of them, how they had made her so happy and loved her so well. Then, I explained that they should all go the Anna's Bakery shopping center and have breakfast. Immediately, Teddy shook his head no. I asked him if he wanted to go and he hung his head low, whispering "No." Sosie immediately chimed in as well as said that she didn't want. I looked at Addie who was pleading without a word to stay. I asked all the kids if they wanted to go or stay and practically in unison they said they wanted to stay. We were a family that had lost the greatest loss and I understood why they wanted to stay. I wanted to shield them from pain but it was no longer possible. This pain was theirs. It was realer than I could have ever mentally prepared myself for. They owned it and would wear it forever just like I would, so it made perfect sense that they wanted to remain intact as a family in the middle of the storm.

I delegated breakfast and taking the kids to our neighbors place. The Lauers were out of town and had offered their place for our family to use. It was now our safe haven! I took the kids inside and sat next to Teddy. Immediately he started to cry quietly. Silas sat next to him, tears in his eyes as well. "Mom, is Nina okay now?" I kissed him and said that she was in Heaven and that she was more than okay, that she was perfect, that she was his angel. He buried his face into my chest. We talked for a little while before Teddy told me he didn't want to talk anymore. I asked him if they wanted to watch some tv and they said yes. Niels joined the boys on the couch and we flipped through the channels until we found Underdog. Joe came into the house and I asked him if he could sit with the boys so I could go check on Todd and Nina.

The courage and love exhibited by these kids in the face of death was breathtaking. I had worried and worried but now everything was sacred. They had loved Nina in life and now were loving her with even greater depth. I was so thankful!!! I was so humbled!!!

The remainder of the day was filled with continuous sacred moments.

Our friends and Todd's parent's arrived shortly after we took the kids to the Lauers and poured their love into Nina one last time. As I walked into our condo and found my dearest friends (Eileen, Sharon, Crystal, Larisa, Katie, Mi Na) huddled around Nina, quietly crying and kissing her, my heart burst with unyielding gratitude. Nina had spent the last moments of her precious life in her home, not tied up to machines and cords in a cold hospital room. We didn't have to make the decision about when to snow her with extra medication so she wouldn't know she was going to the hospital. People didn't have to come say goodbye in an unfamiliar room. Instead, everyone got to return to the place (the living room mattress) that had been Nina's headquarters for 6 months. From that spot, she had commandeered an entire battalion of people who loved her. From that spot, she had kicked our butts in Wii. From that spot, she had laughed her gorgeous and infectious giggle. From that spot, she had yelled at me "Bad mama!". From that spot, she had fallen over from laughing at her brother's antics. From that spot, she smacked us over and over again. It was perfect, albeit painful beyond explanation, that from that spot Nina had gone to Heaven.

Our family and friends had carried us through this journey and throughout this day they continued to do so.

I asked Todd if he wanted me or him to take the boys to the beach. They needed to get out and run around. The girls wanted to stay. I understood. Todd said he, Robert and Joe could take the boys for a hike. I was glad. Sitting around was not how the boys needed to spend their day. They needed a boy-kind of way to process their grief. What was better than running around on the beach?!?!?

My friends and the girls (Sosie and Adelae) helped me bathe and dress Nina. I wanted her to look beautiful, the way she always liked to be. Just a few days ago (last Tuesday) we had gone shopping at Gap Kids with Todd and Yvonne where Nina had picked two new dresses and a beautiful pair of shoes.  We dressed her in her beautiful blue flowered, spaghetti strapped dress. All I can say is that Nina looked peaceful, radiant, with the most beautifully angelic smile on her face. As we bathed her, I kissed her over and over again. I leaned in extra close to her head and tried to memorize her smell. Her stinky head. How I loved her stinky head!!!!

As the boys and daddies went to play and hike at the beach, our friends all gathered around Nina. Sosie and Addie sat on either of her side, stroking her little arms, that were now getting colder by the hour. We sat around and shared our favorite memories of Nina. We cried and we mostly laughed as we remembered the spunky ray of sunshine that was our Nina. My heart and soul wept like the crashing Niagara Falls but I also felt great peace and love. Nina had brought us infinite love but SHE was also well loved!!!!!!!!! The room full of people that very moment reminded me of that!!!!

The remainder of the day was filled with such sacred moments. Everyone who had supported us through this journey had an opportunity to love on Nina, in her own home. Todd's parents came before the guys and boys left for the beach. Gordy's weeping filled the condo and he assured Todd and I that Nina was in Heaven that very moment. The Brennans, the Marbans, the Vineals, Holly, and the Becchios all wept as they kissed Nina one last time.

At one point, before they left for the beach, Teague and Sander came in with Yvonne. They boys had written a story about Nina that they wanted to read to me and Nina. I had then huddle around me as I read, telling them that Nina could hear their beautiful words from Heaven.

Nina died when she was six years old.
We all loved her.
And we will always carry her in our hearts.
Even though Nina died and she'll never come back,
even though she want to. And now Jesus is carrying
her in her heart. She was our very best friend.
I loved her. 
She was very special to us.

Sander & Teague

All day, the kids roamed around the house, occasionally sitting next to Nina. Death had become a new found reality to them because of their precious sister, cousin and friend. However the reality was not a grim, hysterical or scary one. It was sad, so sad, filled with longing and pain but it was also calm and peaceful. The kids will grow up with a profound sense of the preciousness of life and a security in that life does not end on Earth but continues forever in Heaven. Am I devastated that it was my honey-girl who had to teach them this, absolutely. But as I have been telling Teddy for months, actually his entire life, there are only two options in life: be destroyed by the negative things in life or own the pain but then  grateful for the blessing in life and step toward happiness. Today, that mantra I had been stamping into his head and my own had become REAL!!!!

Before my parents and brother and Michelle arrived, Nina had a potty accident. I had Linda clear the house so we (my friends, Sosie and Addie) could re bathe Nina and get her settled again. By now her sweet body was completely cold and bruises (red spots) had begun to appear across her legs, back and bottom where all the blood was settling. I turned on the Tinkerbell soundtrack, her favorite and asked the girls to lift her onto my lap after we took off her dress. We pulled her dress off and I commented how perfectly Nina it was that she had picked two new dresses. I then sat on the couch as Linda and Eileen put her in my arms. An overwhelming flood of pain and heartache took over me right then and there. I asked them all to leave and give me a few moments alone with my daughter. I held her there, naked in my arms, just like I had the very moment she had been born. I rocked her back and forth, kissing her sweet face, calling out to her "Sweet baby girl!" just as I had the moment she had been born almost 6 years ago. I thanked her for being my darling daughter, the ray of sunshine that had filled me with such love. I told her over and over again how much I loved her, how sorry I was for all the times I had lost my temper with her and not played enough with her, I told her I would miss her every second of my life on this earth but that I promised I would see her again and that I couldn't wait to hear about all of her new adventures. I cried and cried, rocking the lifeless body of my angel in my arms. This was the cruelest day of my life, but there was still peace. My most precious daughter was no longer suffering and that was the first thing I had worried about back on August 19th!!!!!

Eventually, I called the girls back in. I couldn't stop kissing Nina, especially her lips. We bathed her, I cleaned her little nose out with q-tips one last time, and then I had us all take turns rubbing Kiehl's lotion on her perfect body. Once we got her dressed, Addie combed her hair one last time and Sosie put her make-up on again one last time. Nina was surrounded by the group of women who had loved and nurtured her through her greatest battle. I held her curled hand and sobbed as I thanked them all for the profound love they had poured into me and I explained that although for a very long time I felt abandoned by God, I knew He had never left my side, each and every one of them was evidence that God loved me. I then turned to the girls and proclaimed my never ending love for them. I promised that I would spend the rest of my life supporting and loving them, that they had carried Nina and me like no one else, that their capacity for love and grace reached beyond understanding and I apologized for all the time-outs I had given them over years and all the times I had lost my patience and I promised to guard their hearts forever, just like I had promised Nina 6 years ago when she took her first breath.

Sosie and Adelae blew my mind this day! The only other person that surpassed them was Teddy!!! I am forever changed because of these children!!!

When my parents arrived my grief came crashing again. The 5 of us hugged in the kitchen, my mother begging the question why and my father fervently telling me how much he loved me. For an hour we all sat around Nina, sobbing. I held my mother and rocked her as cried out in pain, the pain of a grandmother and mother. Nina's journey on this earth was complete and now with her Vovo, Vava, Uncle Bruno, Auntie Michelle and baby cousin surrounding her, her passing was whole. I turned to Bruno and Michelle and reminded them how the only person Nina had kissed at her party (when they were leaving) was the baby!! As everyone said goodbye, Nina didn't want kisses, but she reached for Michelle and the baby and gave the baby belly the most beautiful kiss!!!! We sobbed as we remembered how much Nina had loved that baby boy and I told them that she would be his angel all the days of his life!!!

Eventually, the funeral home called. They explained that there was no room in the car for any adults to ride with Nina but that we were welcome to follow them. This was NOT an option. Instead, I informed them we would bring Nina to them. There was no way in hell my baby was going to leave her house without us. We all gathered around Nina and said one very last goodbye. Then, Todd, Elieen, Sharon, my mom and I lifted her into her favorite Hannah Montana blanket and wrapped her up tightly. Earlier we had asked Teddy if he wanted to come. Everything was now about following his lead. He had declined and had asked that I take Nina and Todd stay with him.

Todd carried Nina out of our home and placed her into my lap. We all cried!!!!! From our bedroom window, I saw Teddy's shadow, his pointy-dointy sticking up. He watched the entire thing from the dark upstairs bedroom. I called Todd and told him to go ask Teddy if he wanted to say goodbye one last time. Earlier, he had declined. This time, he did. Todd carried him downstairs to the car, where he climbed across me and hugged his little sister for the last time. Tears fell as he told her "I love you Nina!" and lay his head on her chest for the final time. I kissed his perfect lips and told him I loved him beyond measure and that I would be back soon. Todd carried him back into the house.

Inside the Pilot, Bruno drove and Michelle sat in the front passenger seat. Nina sat in my lap, with my mom to her left and Eileen to her right. My dad sat in the back row. As we pulled out of my complex, we all sobbed. There are no words, in any language, to describe the pain we all felt. It was searing and turned our souls inside out.

As we drove, I kissed her and talked to her. I grabbed my iphone and created a play list with her favorite songs. We drove all the way to the funeral home, sobbing and singing to Taio Cruz and Usher. Nina had lived life with gusto and vibrancy. Her ride to the funeral home, albeit marked by unearthly heartbreak, would be no different!!! I was determined about that!!!!!!

Once we got to the funeral home, Scott (the funeral home director) met us out back. Eileen opened the door and I stepped out, carrying Nina alone!!!!!! I had brought her into this world, with excruciating pain and suffering. I alone would carry her into this sad place, with the greatest pain and suffering of all!!!!!!

I followed Scott through hallways until we came to a back room. He tried to help me but I snapped and said I could do it. Nina weighed 70 pounds and felt even heavier but she could have weighed 200 pounds and I still would have carried her in!!!! No one would ever know the weight of the pain I had carried since August 19th and would carry for the rest of my life.

I carefully lay her on velvet gurney. I kissed her entire face, her hands and precious feet. We all kissed her goodbye and I instructed Scott to take care of her and that we would bring new clothes and shoes tomorrow. As we walked out, I felt the pain wrap itself around my neck. I turned to my brother and said I needed a moment and started to run. I ran into the darkness and before I turned the corner I screamed the loudest, most painful scream any one in Santa Barbara has probably ever heard and God willing will ever hear again!!!! My scream tore through the Heavens, that I am sure of!!!!!!! It was a scream that surpassed all screams, and echoed across this awful world. I ran and ran and ran. If God had not known my pain He knew it for sure now!!!! As I ran, I saw Our Lady of Sorrows Catholic Church on the left hand corner. I ran to front doors and tried to open them. Closed!!!! Of course they were closed. In my greatest sorrow, the doors to church were closed!! Perfect!!!!!!!

I ran across the street and tore through the green fields of Kid's World park. Fitting that I was there. All along I heard footsteps behind me. Eventually, the footsteps gained on my and a pair of strong arms wrapped themselves around me. They were my father's arms. He grabbed me and held me, sobbing, telling me he loved me, longing to take my pain away, reminding me of the Grace God above was pouring into me, telling me what a glorious and mighty mother was I, how valiant and brave and courageous I had been all these months and how I needed to press forward because Teddy was waiting for me at home. He hugged me, never letting go, as we walked to my mom, reaching her before she collapsed to the ground. Within a couple of minutes (Bruno had hopped into the car with Eileen and Michelle and followed us) Bruno had run toward us too. The four of us hugged and cried in the empty darkness of that park. My parents had come to this country to give us the best life possible and now, 37 years later, we held each other in the greatest suffering known to mankind.

As we calmed down and walked back to the car, I thought of a conversation I had a few weeks earlier with my friend Katie Levinger. She had told me that the pastor at their church had given a sermon about the original Hebrew meaning of the word "blessing". She explained that it wasn't what we thought of as the meaning of blessing today in modern times, that is a good thing. In fact, the original meaning was the complete opposite. It meant to be consecrated by God through great suffering. It was fitting that my entire life mantra, as long as I could remember, had been to suck up my sorrow and step toward blessing with a grateful heart. As I walked hand in hand with my parents and brother in the cold dark night, I felt so abandoned by God...... but the fact.....the truth......was that I was BLESSED!

Monday, February 21, 2011

Day 188: Our Angel In Heaven

Monday February 21, 2011

Yesterday we celebrated Nina's birthday, surrounded by our family and friends. When Nina woke up at 11am, her face beamed. Eileen and I had decorated the entire house a la Sponge Bob. There were streamers, balloons, wall decorations galore. She opened her eyes and looked at me (I was atop the ladder) and said, "Oh Mama, thank you so much!! It's beautiful!!" I jumped to her side and kissed her sweet mouth. She asked me to help her sit up. Then she pulled me in for the biggest smooch ever! It was perfection, covered in love!!! Then she said, "Mama aren't you so proud of me for waking up in a great mood and being happy? Do I get all of my stars?" I giggled with delight as I kissed her mouth again and told her she got all the stars in the world.

Nina had the most beautiful birthday party ever! She was surrounded by every one who loved her dearly!! When we sang Happy Birthday to Nina it was the most sacred moment. Nina lay on her living room bed, surrounded by 40 people who loved and cherished her. She was in perfect Nina form. Hollered that we were too loud when we were singing so we softened our voices. She beamed when she blew out the candles! She even tried to smack the cake. Best of all, she demanded the biggest slice of cake ever!!!!!!

In the afternoon her breathing became very labored and difficult. We gave her more medicine to try to calm her down and help her rest. Before her breathing became even worse, she demanded and took a bite of her cake. Eventually we got panicked enough that we called Dan Brennan to come over. He helped us suction all the extra secretions she had and showed us how to lay her down in a way that would help keep her airway optimally opened.

After Dan left, Todd and I each lay beside Nina. We cuddled with her and all three of us fell asleep. About an hour later I woke up. Teddy asked that I sleep with him so I did. All night long, Todd and I kept vigil. Although her breathing was labored, Nina slept throughout the night peacefully!! I checked on her at 8:30 and she was breathing. Todd was asleep on the couch. I check on her at 9:10 and she was breathing. I kissed her and went into her bedroom to work on the blog. At 9:30 Todd raced in and said that she wasn't breathing. I raced to her side and started CPR. I don't know why. I just felt I like needed to do something. I breathed into her precious mouth about a dozen times. She took several breaths then I could no longer hear her heart beat. I called Todd over and told him we needed to hold her. I caressed her face over and over again, kissing every inch of her face and told her how much mama and dada loved her, how everyone loved her, how she was the greatest gift from heaven, our angel. Todd and I cried, he kissed her and told her also how much we loved her. I kissed her lips and told her our hearts belonged to her and that we would never ever stop loving her and that we would miss her terribly but someday, I promised, we would see her again in Heaven!!!

Todd and I then texted everyone that she had stopped breathing. Around 10am, Dan arrived and confirmed that her heart had stopped.

Our sweet angel was in Heaven!!!!!!

Nina was our angel on Earth and she is now and forever our Angel in Heaven!!!!

We loved you from the moment you we knew you existed, we loved you even more the first moments we held you, and we love you the most now and forever!!!!

Day 185

Friday February 18, 2011

Teddy had the day off from school and slept in. I can see the growing sorrow in his eyes. On a daily basis he asks, "Are things bad?" I keep hoping that I wake up from this nightmare to find them both sleeping together on the bottom bunk. So much has changed since August 19th. Six months does not really sound like that long but my life has been turned upside down and tossed around so many times I've lost count. All I can do is hold onto my anchor and pray for strength.

Praying. I am so thankful thousands are praying for us. Sometimes I feel like I don't even know how to pray any more. Since Teddy and Nina were born, I have prayed a very specific prayer every night for them. I would always thank God for the gifts that they are and then ask that He send a battalion of angels to surround them and protect them from anyone and anything that would hurt them emotionally, psychologically, physically, that He would guard them from illness and help me to be the best mom possible. I have literally prayed this since the moment I found out that I was pregnant with Teddy.

I am grieved beyond all grief that God did not grant me my prayers. I have asked for so little in my life. I have endured misery upon misery myself, never letting it destroy but continuously picking up my cross and stepping forward, with a smile no less because that is what a believer does. Cognitively, I understand that God did not cause this, nor that this is something we brought upon ourselves. But emotionally, I feel so abandoned!!!!!! Until recently, God was the only being with full disclosure of my pain and suffering and yet all that I have already endured is not enough??????? Now I must lose my precious daughter!!!!!!! How much pain and suffering is enough?????? The worst part of all is that now Teddy must carry this pain and suffering. I am willing to carry all the pain and suffering that is dished out at me but to see my precious son be wounded like this is unbearable!!!!

I am so heartbroken!!! I know that we don't deserve our miracle more than any other family. We are all equal in God's eyes. But this is fucking bullshit!!!!!! Nina's illness and suffering if cruelty beyond cruelty. I write and try to document how I feel and what we experience and although I am able to capture an essence of our struggle, it remains that, an essence. Even those who spend time with us, have lived with us during this journey, aren't privy to the magnitude of the pain and sorrow that pounds through our veins with each breath we take. There are no words to describe that pain and sorrow. Only people who have gone through this kind of hell can truly understand. Hell it is!!!!!!!!!!

And even though I am shaken to my core, I have not lost faith! I am heartbroken and strained with God. This the truth and will probably remain my truth for a very long time!!!! I feel abandoned but I refuse to stop believing. Instead of losing myself to the heartbreak and strain I focus on the blessings I do have. I submit to that. I do not lose faith because I recognize that the mighty strength I have was given to me by God. God created me this way and in spite of me feeling destroyed by God's current plan I understand that I have also been built to stand any storm. God is the only one that can see time, beginning to end. I take comfort in knowing there is a purpose, one that I will not understand until I see Him face to face, but there is a purpose, just like there was a purpose in God giving me the spirit of a lion. People ask how I can keep doing what I do, how I can sob one second and smile the next. There is no rational explanation. I don't understand it other than this is how God made me and He made me this way for THIS purpose. For that I am thankful.....but I still feel abandoned!!!! I am still pissed off!!!! I am still heartbroken!!! God knows that even without me muttering a word. It is written in every drop of my blood. But God is God and He can handle me, in any form I come!!!!!!!!!!!!!

Speaking of blessings, Eileen's company is magnificent. Even when we are engulfed in darkness, together we can always find a way to breathe and laugh. Together we have always encouraged each other through our own struggles and as such have built an incredible bond. One gift from this journey is that I have discovered how truly hilarious Eileen can be. We have always loved laughing together. I LOVE laughter, it is one of life's greatest treasures! But it wasn't until now that I genuinely discovered my friend's irreverent and sarcastic sense of humor! The girl is a hoot!!!

Friday also marked the beginning of Nina's birthday weekend. Originally I had thought this was going to be an easy fun filled weekend. I know it will still be joyous but now it has turned into a sorrowful joy (what an oxymoron!!!) I know it was not coincidence that everyone we most love was planning on spending this weekend with us before Nina took a turn for the worst! The awful irony of it all is that it was part of the plan, just not my plan!!!! So, I spent the morning preparing for the arrivals. We all did some last minute tidying up. Teddy was beyond excited that Niels and his cousins were coming! I was so grateful for the relief I saw in his eyes when he talked about them!!!! At least in the midst of this fucking horrifying turn of events, Teddy would have the company and joy of his best buddies. At least they would have each other to have fun with.

While Eileen and I cleaned, Nina wanted her daddy. Again, I was thankful that he had this time with her both for his sake but also for mine. As Todd and Nina hung out and ate a smorgie of food, Teddy went with Mario to Kmart to buy some nerf guns. In spite of my extreme focus on Nina's illness and needs I have never lost sight of planning for Teddy's care. I knew that he felt a heavy burden and that he would be all torn up, filled with mixed emotions about his sister's birthday party. He needed a little something and nerf battles always help boys (My liberal friends hate me right now! Too bad!!!!). I gave the guys specific instructions. Buy each of the boys a cool nerf gun and don't spend more than $25 on each gun. I don't know why I didn't see this coming. I expected they'd buy some regular nerf guns, you know the small ones, but when they returned from the store I was greeted with massive Tommy guns that require batteries!!!!! Teddy was stoked so that was all that mattered. To make things even funnier, Mario bought himself the daddy of all Nerf guns!!! The thing was a monstrosity and Teddy was totally salivating over it but it cost more than I had allowed. He whispered to me, "I'm gonna save my allowance to get one of those!" I smiled and kissed his warm cheek.

Soon there after, the Marbans arrived. Teddy retreated to his lair to plan his attacks, Mario took care of Cristina, and we sat down with the Marbans to talk about Nina. It had been a week since Linda had last seen her and about a month since Eduardo had last seen her in person. Although the Marbans are world famous physicians and researchers they are first and foremost my friends so I was able to see the look of deep sadness in their eyes. They didn't need to say a word.

Nina had a good day today. She ate and swallowed decently. We just needed to watch her very closely. She slept in almost until the Marbans arrived and was responsive. She smiled and laughed at our silliness and got annoyed and angry if we did something that pissed her off. Most of all, she was eager for Sosie and Adelae to arrive. "When are the cousins coming?" she would ask, barely audible. The Marbans got to see how much she struggled with her speech first hand and I had to remind them that today was a good day for her communication. In fact, today was a good day for Nina's overall functioning in comparison to the rest of the week. At one point when I said that, I saw Linda flinch! I could imagine what she was thinking, This was a good day?? But true to form, Linda said well's a good day! No wonder we are such amazing friends!!!

Not only had the Marbans come to spend the day with us, they brought Las Fuentes!!!! Over the best food in the world, the Marbans asked what I needed from them and I explained that I needed them to help me coordinate with our new nursing team and Dr. Greenfield a medical plan for Nina. This week had been a nightmare because I had no plan. All I had was my daughter going through hellish pain and misery. We did not want Nina to be in misery!!!! As such, I needed to have a concrete plan about which medications we were going to use and how and when we would take Nina to the hospital. There is nothing like planning the end of your child's life over Mexican food!!!!!!!! Actually, it probably couldn't have been better. I love Mexican food. It is comforting!!!! And eating comforting yummy food is incompatible with panic and distress over the most heinous of topics! is grim and sick!!!!!

Eduardo and Linda understood my needs. I called the supervisor of the new nursing team and Dr. Greenfield to make appointments that Eduardo could attend. At the beginning of this nightmare I had asked him to advise me as if Nina were his own precious daughter. Nina and Cristina are the exact same age so this makes it very, very real for Eduardo and Linda. Every step of the way, the Marbans have done exactly that!!!

Right after lunch, the Dawsons arrived!!! Teddy was elated to see his buddy Niels and they ran off. Yvonne just hugged me, trying to pour every ounce of strength into me! After a few hours of playing, they took Teddy and the boys to Zodo's for bowling and food. I was thankful, so thankful, to have someone I could trust to take care of Teddy. Yvonne had loved Teddy from the very moment of his birth. It was fitting she help me now!!!

We met with Susan, the supervising nurse and clarified what their role would. Starting Monday they would come daily for a couple of hours. Then we went and met Dr. Greenfield at the Starbucks in Vons. Todd came along as well. I was glad he did because he needed to participate, for his own sake. With Dr. Greenfield we discussed exactly (as much as these matters can be exactly planned) what the plan of action should be, which medications should be used, when medications should be administered and how we would decide to enter the palliative sedation phase. I made it clear that if Nina had to die from this awful monster we wanted her to stay at home, in the comfort of her home, as long as possible, and that we did not want to transport her to the hospital until she was permanently unconscious. We did not want to give her anything more to fear!!!!! Dr. Greenfield is a gentle and loving man. He has children the same age and he understood clearly what we needed. As such, he and Eduardo agreed that before transporting Nina we would snow her so severely with medication that she would never know what was happening. Todd sat and quietly cried. I reached for his hand and tried to provide him with some comfort. But what comfort is there when you are sitting at a table discussing how to help your precious daughter die peacefully!!!!

I left our meeting feeling secure. I hadn't felt secure all week but now I knew we had a plan. I understood that this plan could and would probably change but its existence helped me feel more secure, grounded. Seeing your child miserable in pain is the worst thing any human can ever go through. If having a plan of action helps then why the hell not!!!

The best piece of information I got from the meeting was that we could use morphine patches to give Nina narcotics. Since swallowing was becoming an issue by the day I wanted to have something on hand instantly. I knew I could learn how to access her port and add medication through an IV but I also wanted something more, I just didn't know what. After Dr. Greenfield mentioned the patches, I signed a huge sigh of relief.

We went to Rite-Aide to see if we could pick up the patches but Dr. Greenfield needed his triplicate so we agreed to get them from him tomorrow. I hugged Dr. Greenfield and thanked him for his support! Every one we have met has been such a blessing!

When we returned home, the company Life Solutions came and brought us a suction machine and oxygen tanks. They showed us how to use them. I listened but didn't think we would need to any time soon. Linda and Eileen cleared a corner to store them. I looked at them carry those things off and shook my head!! How could this be????? How can this be our life!!!!!!

Thankfully, my moments of sadness are short lived. It was dinner time and I had to focus because my sweet girl was hungry, "I'm starving mama!" Mario had taken Cristina to Chuck-E-Cheese, so when he returned the Marbans said goodnight. At that point, Mario asked if I had found his gun. Mysteriously his massive gun had disappeared :) When I had asked Teddy where it was he gave me a shocked (but guilty) look and said he couldn't believe I wouldn't trust him, that I was accusing him of taking Mario's gun!!! Mario and I looked around the condo and found his gun, all set up in the garage. My guilty son and his accomplice Niels had spent the afternoon building an arsenal in the garage. From the looks of things it was obvious they had planned to ambush Mario! We both laughed and Mario asked for a sheet of paper and pen. He then wrote the following note and left it on Teddy's bed:

A minute after Mario had finished his letter Joe and the kids arrived!!!!!! The kids were so happy to see Nina and gave us the biggest hugs!!! I grabbed my keys and Eileen and asked Todd to send us a Taco Bell order for the kids. We grabbed some grub and then picked up Teddy. The look of happiness on Teddy's face when he saw his cousins was priceless!! I reminded myself that above all, this was a birthday weekend!!!!

Holding hands with Sosie

Watching Pink Panther with Addie

Of course it had rained all day!!! All I hoped for was that it wouldn't rain on Sunday!!!!

Sunday, February 20, 2011

Restful Sleep

Nina got some much needed rest last night. The morphine patch plus the atavan really made a huge difference!!! She even requested to keep the oxygen mask on all night, sweet precious girl!!!

Although Nina rested it was almost impossible for Eileen and I, who were laying next to her, to rest! Her breathing is so labored. You can hear the fluid build up, the accumulation of spit. Periodically she would burst into a violent cough, clearing her airway!!! Each of these coughing spells would shoot through Eileen and I like a bolt of lightening. We are remaining calm but it still hard to not be in constantly petrified when your child is fighting to breathe and here is nothing you can do!!!

Twice in the last hour she has woken up and said she was hungry. I explained Vovo an Vava were on their way to make breakfast. She didn't protest but quietly went back to sleep. She knows when Vovo and Vava make breakfast it is good times!!!

As I publish this post, she is still comfortably sleeping.

Day 184

Thursday February 17, 2011

Eileen and I cuddled with Nina all night.

Nina slept. Some tossing and turning.

Teddy woke up in a great mood. Said I was the best cuddler in the world.

On the way to school, asked me if things were bad. I reassured him that they were the same and that I was so proud of how loving he was being to Nina.

He held my hand all the way to his classroom.

Friends came to visit.

It hurts to see the ghostly looks on their faces when they see Nina.

I hate seeing how behind the pain in people's eyes death looms....they look at Nina and see death. I hate that!!!!!!!!

Nina enjoyed her bowl of Lucky Charms. Had dad hold the bowl but insisted on feeding herself.

She can't walk any amount with assistance.

She can barely hold onto to us when we stand her up to clean her up after she goes potty.

We have her bowel movements under control. Doctors worried about constipation because a major side effect of narcotics.

She can still swallow her pudding with the pills.

Swallowing becoming increasingly harder.

Gags on food.

Gags on water and liquid in particular.

Extremely frustrated when we can't understand her.

Can barely speak.

Sometimes only 1 in every 10 words is intelligible. Takes multiple tries for us to understand her. She looks panicked, pissed, scared!!!

Keeps saying she feels like she is falling out of a car :(

Constantly struggling with temperature regulation.

Asked to go swimming again.

Wanted to wear her orange swim suit. Said she liked them all but insisted I pick one :) I told her I loved the blue polk-a-dot one.

Wanted Panda for lunch! Who would have guessed.

Teddy had a wonderful play date with his buddy Will.

His teacher said he is doing extremely well.

Teddy is a rock!

Talked to my friend Susan about bringing her boys to see Nina before she got worse.

I want every one who loves Nina to be able to see her and love on her.

Made Eileen hold Molly. Systematic desensitization of animals! Eileen's husband very happy!

Nina went swimming with dada again. This time not as long because she was cold.

We laughed when we could.

We cried when we needed to.

We tried and tried to make Nina happy!

The Becchios came by with the boys.

The boys were so sweet to Nina but were sad and scared. I tried to use Molly and dressing her up to bring in some levity.

Nina struggled to be nice.

Got happier with chips and the cheesecake cup from Panda Mario brought her when he picked up Molly.

Nina mocked Mario in front of every one. Reminded us all that he is going to be Pearl from Spongebob for her birthday and has to wear a skirt :)

Nina wanted to cuddle with Daddy for bedtime.

Both kids fell asleep easily.

We tried to rest :(

Day 183

Wednesday February 16, 2011

The oxycodone worked a miracle. Nina rested!!! Thank God she rested!!!!

When Nina woke up she requested to go swimming in her new swim suite. She loved her new swim suites and had bought 4 :) A girl can never have too many swim suites. For the past couple of weeks, Nina has been increasingly asking when we could go swimming in our condo pool. Each time I had to explain we would need to wait until summer and time I'd get smacked.

I had breakfast with Dan Brennan and brainstormed ways to deal with our Hospice nurse being out of commission. Poor Laura had broken her arm earlier in the week and required surgery. It seemed like such a long time ago since Dan I sat in his office trying to figure out what was wrong with Nina. We cried and hugged!

When Yvonne arrived on Monday, the first thing she did was call around town until she found an indoor heated pool. The YMCA had generously offered for us to use their pool and we had an appointment for 11:30am which made Nina very happy!!! As we got ready, Nina asked for Teddy to come too. By this time, it was 10:30 am, Yvonne had gone on a donut hole safari and Todd was upstairs. Thankfully, Larisa was able to come save the day again and hang out with Nina while I went and picked up Teddy. At first, Teddy was hesitant to come because he didn't want to leave school and be stuck with extra work :) I explained that wouldn't be the case. When he arrived home, he gave Nina the biggest hug. His enthusiasm was just bounced off the walls!!! It made my heart sing to see Teddy be so strong and supportive....all for Nina's sake!

We had a wonderful time at the YMCA, who ended up giving us free passes. At first, Nina cried because the water was cold (not as warm as she expected) but eventually she settled down on the ramp with Todd and the two of them just sat there, in the glare of the sun, for almost an hour. Nina just seemed so comfortable, so peaceful, floating in the water, leaning up against her daddy. Teddy swam around and performed tricks. He was seriously disappointed that the YMCA has a no one under 15 rule for use of the jacuzzi. The one thing Teddy had looked forward to most was using the spa. Teddy is like his mama in that request....we both prefer spas :)

Earlier in the morning I had called our families and told them they needed to come asap, that I strongly believed Nina was slipping and that they needed to see her now. I also called Eileen and told her she needed to come earlier than planned. Originally, Eileen was planning on coming at the very end of the month. I knew Eileen would be devastated if she wasn't here before Nina fell into sedation. Within an hour of speaking to her, I got a text from Eileen telling me she was on her way to the airport. I sighed a huge breath of relief!

After a wonderful time of floating and swimming in the pool, it was lunch time and Nina requested.....Panda Express!!!!! Larisa and I went to pick up food while Todd, Yvonne and the kids relaxed at home. I could not take another bite of Panda so I snuck over to Baja Fresh.

With our tummies full, the rest of the afternoon was calm. Nina and Todd napped, while I hung out with Teddy in his room watching iCarly episodes. Around 4pm I told Teddy to put on his shoes and get ready to go to the park or beach. Teddy has been doing amazing but I don't want to take anything for granted. The last thing I want is for him to hole himself up in his room playing video games and watching tv. Of course when I suggested we go out, Teddy got super annoyed and threw a medium fussy. I ignored and pressed forward. Within seconds of arriving at Goleta Beach, he was running around with Molly having an absolute blast!!!! Also within seconds of arriving at Goleta Beach, I realized I locked the keys in the car. Thankfully I had my phone so I called Yvonne and had her bring the AAA card. Yvonne joined us at the beach. It was refreshing, almost cleansing to walk along the beach, to smell the ocean water, feel the wind race past us, smile at Molly's hair fly all over the place, and relish the happiness on Teddy's face! Each time Teddy ran past us, all I could do was smile! He is such an astounding person!!!! He is only 8 years old but he has walked through this journey with more grace and love than most adults. Teddy is destined for greatness and he already proving me right!!!!!!!

Yvonne had been under the impression that Todd had called AAA. When they didn't show up for a while I called to check on the status of the tow truck and discovered that the call hadn't been made after all!!! That meant we had to wait extra longer but Teddy didn't mind. He just ran up and down the beach like a manic puppy! It was so good for him to get that energy out!! Eventually the tow truck guy showed up and opened the car. We went to the store and picked up flank steak, Nina's request. Back home, Teddy took a warm shower while I grilled the steak. Nina was deliriously happy to eat the steak. Her swallowing was ok and because of the medications her emotional misery was under least better. Bottom line, we were relieved she wasn't miserable. Misery for our honey-girl is unacceptable!!!!

Once everyone was settled after dinner, Yvonne and I met with Sharon, Crystal and Larisa. I don't want to go into details about our meeting other than it was the kind of discussion I had hoped and prayed we would never actually have to put into place!!!!!

At 11pm Eileen arrived. The brilliant Bostonian didn't bring a jacket so when I took longer to pick her up she froze! Even though we live in temperate Santa Barbara it is still winter. I hugged my ding dong friend. I was soooooo thankful to have her by my side!!!

Day 182

Tuesday February 15, 2011

Our night was wretched!!! Although Todd slept (ha! there was do damn sleeping!!!) with Nina, Yvonne and I lay wide awake in the bedroom, a few dozen feet away but close enough to hear every single moan, toss, plea for comfort!!!

Each plea for comfort that Nina made, was like being stabbed through the heart with a billion fiery rusty nails. She needed comfort. I needed comfort.

As soon as I dropped off Teddy boy, I cried for a very long time. I sobbed and wailed and cursed the doom that had now parked itself overhead. Then, with strength regained, I started my rampage of calls to doctors. I spoke to the Marbans and Dr. Greenfield for what seemed like an eternity trying to figure out how to alleviate my precious Nina. What seemed like an eternity was not very long at all. Eventually the team decided oxycodone would be the right medication to help alleviate Nina's pain.

Nina's pain!!!! Those are two words no parent should ever have to utter!!!! Sure our kids get cuts and scraps and bruises but genuine child should have to go through agonizing pain and that is what Nina is precisely going through....agonizing pain!

My mind easily slips. I think of something and then the next second it is gone. I have to fight it from going to horror of Nina's pain. Letting myself go there is of no use.....nothing gets accomplished there. But if I pull myself together, if I can make myself think, if I can secure myself....then I can do something....even if it is the smallest of somethings. As my mind raced and I fought myself for dominion, the oncology office called me to say that I needed to pick up the written prescription and hand deliver to the pharmacy. I raced over there and was back on the freeway in no time. As I took the exit to the pharmacy I cop flashed his lights to me. Damn it!!!!! I was on the phone!!!!!!!!!!!! Perfect!!!!!! My morning was a fucking nightmare and now I was going to get a ticket.

As it turns out, I didn't get a ticket. Officer Robles came to my window and asked me if my call was very important. I turned and said that if was, that my almost 6 year old daughter was home dying from a brain tumor and had been in pain for two days and that I had been talking to doctors about how to help her. The man practically turned white. He gave me his lamentations and then added that he had first pulled me over because of the massive crack on my windshield. I apologized and said we'd get it fixed. Eventually, he forgave my indiscretions and sent me on my merry way. Who says cops don't have hearts?!?!

I called Yvonne and told her I had gotten pulled over. Just the day before, I had asked her to help me get it replaced but she informed me that Todd had told her to stop and that we should wait until I got pulled over and got a fix-it ticket!!! NICE!!!!!!

Although my morning was shitty, once I got the oxycodone, things slightly improved. First, Nina was elated to see me when I got home. She has been all about Todd these last couple of days and I am so grateful! Todd needs her to need him!

As soon as I saw my honey-girl all I could do was kiss her. As soon as my honey-girl saw me, all she could do was boss me around ;) She wanted Panda and wanted to go shopping for shoes and swim suites! I couldn't have thought of a better replacement behavior!!!!

Don't Go Numb, Just Love

I just got back from a long walk in the freezing cold darkness of the night. I am numb from the cold!! Fitting that I'm now physically numb when earlier today I was emotionally numb.

Our lives keep plummeting into greater sadness!!! Yesterday was the worst day of my life. I thought we were losing Nina right then and there!!!!!!!!! After we got more medication and stabilized her, I went upstairs to take a shower. I had sent a massive group text to family and friends informing them of our heart ache and noting that I was numb from all the pain.

Then unexpectedly I got a reply text with the most glorious of words......

Don't go numb, just love!

Those 5 singular words instantly filled my heart with thankfulness and direction. My friend was right!!! My purpose in this nightmare is to love Nina!!!!! and Teddy, the rest of my family, and all of those around me!!!!!!!!

I am Rosy and the one thing that I can do for sure, irrespective of how nutty I get, is love!!!! I will fight to love and keep the numbness at bay!!

Please pray that we get fortified with strength and courage!!!

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.

Saturday, February 19, 2011


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'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!!!!!!! 


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 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!!!


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.