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!


  1. I have never met you or sweet Nina, but grew to love Nina deeply since learning of her battle a few months ago. I thought of Nina every morning, every night, constantly through the day. Her spirit during her fight leaves me speechless. It is a spirit full of determination that is fully inspiring.

    My son also has a tumor in his brain stem. Although, the future is uncertain, I hope if his fate is heaven sooner than we wish, I have the strength you do. The ways you handled this situation, explaining it to the children, and finding grace admist the devastation is admirable. I hope I can be half of that. You have made some of the most beautiful posts, clearly speaking from your heart letting Nina guide your every word. Please know here in Virginia, Nina will forever be remembered for her zest, will power, and sheer joy. What a beautiful angel heaven now has!

  2. Thank you for sharing, in the deepest of ways. Even through her death, you were a solid rock. I will continue to pray for you all. Your family is loved by perfect strangers. You are an example of an incredibly Godly mother, an inspiration to me.

  3. You are an amazing, wonderful and beautiful mommy Rosy Fredeen. God has blessed you with such love and angels in your life. He has given you the greatest of gifts. To have Nina for the day and to say good bye with such grace, strength and everlasting love. You and Todd brought her into this world together with an abundance of love and together you helped her gracefully, peacefully and with so much love surrounding her enter into pure eternal happiness.

    As much as this post has me heart broken and in many tears, I am in awe of your family and friends devoted love to Nina. It is no wonder as she is a true treasure...but their devotion to care for her that day and to pour themselves over her is beyond words..and is truly the most beautiful of examples of love I have ever heard of. You are surrounded by amazing unconditional love.

    I am astounded by the cousins reaction and love. How they were so strong and so understanding. Nina has forever changed many lives around her, but for the children I believe that the ways in which she has changed them is immeasureable. They are fabulous beautiful beings that Nina's spirit will shine through. I am so proud of all of them.

    My heart is pained by the sorrow that is being felt by You, Todd and Teddy..I pray that God continues to shower you with blessings and strength for each moment. I pray that Teddy feels and knows the love that he is surrounded by and how much Nina adored him.

    I am thinking of all of you with love and many prayers.

    Love and Hugs always...

  4. Rosy,

    You and your family are absolutely incredible. So much love, such strength, courage and devotion to one another. Thank you for sharing your life with us. I hope you will continue sharing. I will keep praying for you, Todd, Teddy, Vova, Vava, Sosie and all of your precious friends and family.

    Much love to you,

  5. There are no right words. I read this and I am deeply grieved. And, yet, all throughout this post, you speak of peace! Only God could give you that during this storm. I am deeply sad for your family, but know that your strength in Jesus blesses me, and challenges me!

  6. I have no words...what a sacred experience, being with your sweet Nina as she left this world to be with Jesus! Your faith and sweet, assertive spirit are a balm to your family--we can read it clearly every time you post. Thank you so much for sharing this experience with such people as us-mostly strangers to you. Thank you for baring your soul in such a powerful way, with grace and honesty. I pray God holds you tightly in His arms throughout the coming weeks.

  7. Words are so little, so inadaquate and yet I must leave a comment here so that you will know that I read every single word, stopping several times beceause I was crying so hard. Through my tears and sorrow for your loss, I was also struck by the peace and strength that you and your family all displayed in your daughter's final time at home.

    I do not know you and only found your story today, when it is too late for my prayers to be used for Nina's healing. But I will now use all of my prayers for your healing.

  8. Rosy thank you for sharing! I am crying so hard right now reading this post. Your journey has been a reminder to me how wonderful God is by blessing you with a great support system. Praying for you and family during this journey. Blessings, Corinne

  9. No words.

    "In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express" (Romans 8:26)

    Praying for you. Many thoughts, and hugs if I was closer. Praying.

  10. Wow...what to say to that beautiful narrative of the worst and best day.

    Teddy and Nina ARE so lucky to have you as their mom...and are so blessed to have the family/friends that you have.

    Sending love and hugs


  11. Not a day goes by where I don't think of your family, although I have never met any of you I cant help but feel apart of you through this bolg.

    My heart and soul are with you and your family in this time. My deepest love and compassion are with you in prayer.

  12. My every prayer, thought, wish, and anything and everything I could possibly give or do to provide any condolence goes out to you my DEAR ROSY and your precious family. Which FOREVER will be a family 4, forever. I'm deeply sorry for this pain Rosy...I really am.

  13. All my heart to you ad your family. Words can't espress how you and your beautiful family have impacted me. You're an amazingly strong woman, no wonder Nina wasa warrior.
    Love to you all

  14. I heard this song yesterday and instantly though of you Rosy. I don't know how to post it other than by posting the link. I hope some day you get a chance to listen to it, it truly is beautiful. You all continue to be in our thoughts and prayers.
    The Lenssen's

  15. Rosy

    Thank you for sharing your daughters love with us. Forever will it be in our hearts

  16. Rosy-

    Thank you for continuing to write to us. Your words have deeply reached a large group of people that care and will continue to pray for you.

    Your final day with Nina sounds like it was beautiful. I know (from real experience), how hard it is to let someone else take the shell of the one that we love, and to beg them to treat them with all the respect in the world.

    You are amazing Rosy. So it Todd, Teddy, and your family. I continue to think about you several times a day, and hold you all close in my heart.

  17. I am continuing to pray for you and Todd and Teddy and all the cousins and grandparents. This might sound tright but God is Good All the Time No Matter What
    My heart is breaking as I read your post and it doesn't seem like God is good but Nina is in heaven now in no pain.

  18. Thank you for sharing, raw and real. You, Todd and Teddy, along with your extended family have been on my heart and prayers constantly. I am so thankful that God gave you such an outlet as this blog. You have drawn us in and made us love you all and with that comes much support and love beyond what you can imagine! When you feel like you can't go on another step, there is someone out here lifting you in pray! What a blessing you have been to so many and pray you know so many of us want to do the same for you as you walk this path. Much love to you!

  19. My wife and I are praying for your family! Nina is looking at the face of Jesus, embraced by His presence. I am so sorry, Rosy, there really aren't words! We're praying!!

    See that you do not despise one of these little ones, for I say to you that their angels in heaven continually see the face of my Father who is in heaven. ~Matthew 18.10

  20. My heart is breaking for the loss of your beautiful little angel. You and your family are in my prayers.

  21. Rosy, Nina went from the loving arms of her dear parents and her tender-hearted brother and some very special cousins into the welcoming arms of her Savior. I so appreciate the way you have shared your love, grief, frustrations, rage, raw pain, and God-given peace with all of us. Your Father will bless your openness in the lives of others traveling through the Valley of the Shadow. Although death is so ugly you faced it with grace and courage. And you were so blessed to be able to have Nina at home with the people she loved when she took that final breath. Your account of that last day reminds me of what mothers have experienced for thousands of years as they held their dying children, bathed and dressed them, kissed them goodbye, and comforted their other children as they said their final farewells. The days ahead of you will be sad and difficult so I will continue to pray for God to enclose you in his comforting arms.

  22. Dear Rosy and family,

    I too am just a stranger that was compelled to read Nina's story told through the eyes of her mother.

    Rosy - you are a fierce, loving woman who opened her heart to the world. Your daughter is just as fierce and she learned to fight and love with you and your amazing family as guides. Her peace now I hope brings you some relief and healing in the days and years to come. But please know that these words are so little and no one knows the grief and loss like you and that beautiful family of yours.

    Thank you for sharing your touching story with the world. If it helps, please know that your honest account of a truly horrific experience has left a profound mark. Just as your feisty little Nina has.

    God has not forgotten or overlooked your love and strength through all of this. You and your family are an inspiration and truly show us that this life we live is fragile.

    You all are in my thoughts and prayers.

    p.s - your entry where you stated THIS IS F******** BULL**** had me in one could not have said it better. Thanks for the raw honesty that we all can learn from. :)

  23. Rosy,

    Because of you and your beautiful family, I am trying to not take my family for granted.

    If I could take some of your pain away I would. Just know that people are praying for all of you. Nina's precious life will not be forgotten!

    God bless you with strength for yourself, Teddy, Todd, and all the rest of your family and friends.

  24. I have never met your sweet Nina, but I feel as if she has flipped my wolrd upside down. Not only was she the strongest, sweetest, most silly and sassy girl-she also was a fighter! She won the fight!! She made it home first! How lucky she is to be in gods arms living the most gloriously! She has taught so so many people to love more, look to god for everything, and to hang on to our loved ones through the thickest of times. And you, Rosy, are THE most courageous mother I have yet to meet. You are truely a person of admiration. I can only hope to be half the mother you are. you love those two kiddos of yours and taught them both the way of god! You are AMAZING!!! My thoughts and prayers are with you and your family during this difficult time. xoxo

  25. I feel your pain, I see your torn heart. I cried reading your blog post. I am so sorry, there are no words that will comfort you, only time will ease it just a bit but the pain will always be as if it was yesterday. Our children will be pain free. No matter how many times as parents we pleaded to trade spots with our sick child, you would do anything just so you know your child will live, but those prayers never seem to be answered. Its a part of life we have to except even if we don't like it. My prayers are with all of you in this painfull time, I pray for strength and peace for your hearts.

  26. Rosy: Through sobbing tears, I just wanted to thank you for your raw, personal, very touching account of Day 188, also known as Nina's Day 1 in Heaven.

    My prayers for you, Todd, Teddy and the entire family continue wishing you much peace in the hours, days, weeks, months and years to come. And thank you for bringing Nina into all of our lives. We are moreso blessed now than words can ever express.


  27. Rosy,

    I have always thought of you as a very strong, extremely caring person, and most importantly, a wonderful and loving mother. I have been following your blog and read every word since you received Nina's diagnosis. Words feel so inadequate right now, but I wanted to let you know that I've been thinking of you and your family every day and my heart goes out to you. Your honesty and ability to appreciate blessings in the middle of this storm is truly incredible. I am not yet a mother, but when I am, I will think of you and be reminded of what it looks like to be the most amazing mother any child could ask for. The love, protection, dedication, and fun that you, as Teddy and Nina's mother, have provided to them is inspiring, to say the very least. My heart goes out to you, Todd, Teddy and the rest of your family.

    lots of love,

  28. I don't know you personally but I want to send you the strength of heart and love to evolve through this tragedy. Your words have made me stop and remember to never take my family for granted. Peace be with your family Rosy.


  29. Rosy, my prayers and thoughts go out to you and your family. I have a son that will turn 1 on March 1st. Lately I find myself feeling sad about him getting older. I can't help but constantly think about the fact that he will one day get older and not need me anymore. Your blog has helped me to set aside some of those worries and dwellings and appreciate the time I have with him here and now. I don't want a day to go by without us telling him and showing him how much we love him like you did with Nina.

    You are a strong and awesome mother. You are an inspiration to all mothers out there reading your blog, I'm sure of it. Growing up I remember looking up to you as a fun loving woman who enjoyed her life and made the most of it. Through this blog you've proved you are that and much more.

    Like many of you blog followers have said, thank you for the raw, real story that you've shared with all of us. God bless you and your family in this time.


  30. I am so glad you were able to carry her to her rest. God never abandons us, even when we feel he has, your heavenly father gave you your earthly father so he could wrap his arms around you in your darkest hour. I wish I could do the same. I hope God's peace and grace fall on you in these next weeks, months in years.
    with best wishes and sympathy,
    Chris Oursler

  31. Rosy,
    There are no words to express how deeply sorry I am for your loss. Although I have never met you or your sweet little Nina, I know that my dearest friend Crystal loves you and Nina very much. I will not pretend to understand what you are feeling but please know that by sharing your story, your little Nina has touched countless lives. She has reminded me how precious life is and how each day with our loved ones is a gift. Your family has shown tremendous faith and strength during this difficult time and it has truly been inspiring. I pray that you find comfort and peace knowing that your little Nina is no longer in pain. Your family will continue to be in my thoughts and prayers.


  32. Rosy & Family,
    I have been following Nina's story since the beginning. My cousin had been diagnosed the year before and beat her leukemia. When I heard of Nina, I was just devastated. I felt the pain and persevered to find a cure for your angel and others. No child, nor their family, should go through this pain. You are so strong and such an incredible inspiration. I was in the midst of a fundraiser for sweet Nina, when I checked your blog and she had earned her wings. I will continue and donate the money to you or an organization to find a cure for DPIG. I have gone to church, prayed, and rallied everyone I know for your family and Nina, and will continue to do so. You are an inspiration! Nina is an inspiration and will never leave my heart. I don't think my heart has felt so much pain since my own cousins fight. I balled my eyes out but I know she is safe and in heaven watching over you all. This just shows how much of an impact your angel had on this world. Me, a person not ever knowing her personally, loved and cared so deeply for you family and fought ten times harder in your honor. Im so incredibly blessed to have virtually met your family. I will continue to find a cure, in your honor. Nina and Rosy, you are my heros. I will keep you in my prayers and thoughts everyday.

    With so much love <3

  33. Rosy,

    Over the past year, I have been following Daisy's story. When the Merrick family requested prayer for your precious Nina, I started reading your story from Day 1. My heart ached for both of these families, and I prayed often for these little girls. I told my friends about Nina and Daisy, and about the gift of perspective their stories had given my life.

    I am the mother of five, and two of our sons are severely autistic. They are four and three, and they are both completely non-verbal. So often I have had one of those days where I felt God was just being mean. Perhaps I had cleaned up poop for the umpteenth time, gotten a busted lip from restraining them during melt downs, watched as they pounded their heads against the floor, or wept over the uncertainty of our lives. Then God would bring your Nina to my mind. At a moment when I was feeling so sorry for myself, I would think of how you would probably give anything to have autism instead of an inoperable brain tumor.

    I have cried for days over the passing of Nina. Your little girl was a child I never had the privileged of meeting, but because of your gift in sharing her story, my life has been forever impacted. Thank you for being so real and raw, and thank you for being a beautiful example of a mother. We are praying for you, and Todd, and your sweet Teddy.

    Because of His great grace,
    Christen Verroi

  34. I don't know you but saw this on my friends Facebook page. We do relay for life together. I just feel terrible for your loss and am so sorry that you and your family have to go through this. I don't know how you feel but have been told that there is no worse pain than to lose a child. I will pray for you and your family and Nina was truly a gift from God. God speed!


  35. Rosy,
    Our hearts go out to you and your family. Your beautiful Nina, your ray of sunshine is so loved. We are praying for you, Teddy, and Todd every day. Keep your faith. I've never met anyone with such a profound and reflective relationship with God as you have. We wish you the gift of inner peace.
    Scott, Bridget, Jack, Katherine, and Maggie Cienkus

  36. This comment has been removed by the author.

  37. Rosy,

    My heart goes out to you, Teddy, and Todd. As I read your blog through tears, I knew that there is no way that I could even imagine the pain that you and your family are going through. I am so sorry for your loss. Yet, your amazing strength and unrelenting faith shine through. Though I never met your sweet Nina, she has touched my life and the lives of so many others.... a true blessing indeed. What a beautiful, sweet, and loving Angel you have watching over you from heaven!

    I will keep you in my prayers.


  38. Rosi, Todd, and Teddy,

    I am so sorry that this journey had to go down this path. I prayed so hard for the miracle of her healting, but God has a greater plan in all of this. We will continue to pray for you and your family that God may give you continued strength and courage. Nina is a great loss, but is now in Heaven. She will never be forgotten. She has touched the lives of so many…including mine, that I will never forget her. How can I, she and my daughter share the same birthday. And I have come to love her these last six months even though I never personally met her. Have faith…she is in Heaven praying for you now. Find peace in knowing that she is no longer suffering, but is happy. Trust that one day all will be reunited in God’s kingdom.

    Your family has been an inspiration of strength and courage in the face of devastation and pain. May God bless you and continue to carry you through the pain and sorrow. He has not abandoned you, but is close to you.

    With love,

    Discoveries offer first new hope in three decades for lethal pediatric brain tumor

  40. Myself and my family have been keeping you, your family, and your little sunshine in our prayers. Although we do not know you all we want you to know that their are many lives out there that have you in their thoughts, prayers, and hearts.
    Our love is with you.
    May God be with you and your sweet angel.
    Jackie Sortino

  41. I just stumbled across your blog, and although we don't know each other I felt compelled to tell you how much your story touched me.

    I've never had to go through anything so unimaginably difficult, and I still find myself struggling with faith. The fact you've kept yours through this is a testament to how strong you are and gives others like me hope that we can grow to have that much faith as well.

    Thank you so much for sharing something this profoundly personal. I'll pray that you and your family continue to find peace.

  42. I am so deeply sorry for the loss of your precious Nina. I have followed your blog for a few months now and the strength and grace shown through your entries has been nothing short of amazing. I pray that the peace beyond all understanding continues to pour on you and your family. Thank you for sharing your story and your family will be in my prayers.

  43. Hi Rosy, just stopped by again today and wanted to let you know we're thinking about you every day, and missing Nina sooo much. I hope Teddy is doing okay, and will keep you all in my prayers.

  44. There are no words. Just love for you in Christ, and thanks for sharing your beautiful daughter with all of us.

  45. It was hard to read the entire blog through the tears. My heart, my prayers, my thoughts are with you. We may not know one another, but I assure you I am only one of many who stand beside you, holding you up in prayer. With much, much love.

  46. I have read this many times the past 6 years. Your words have stuck with me. Love to you and your family... praying for peace.