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All I want……… December 13, 2017

Posted by Waking Up With A Broken Heart in Christmas, Infinite Pain, Love & Grief.
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All I want for Christmas…..and every other holiday and birthday…..is my baby back.

That’s it, nothing else.    Just him.    Just my Sal.    Just my precious baby.

So he can wrap his arms around me and tell me he loves me.  So I can kiss him good night. So I can hear him say “mama hug me”. So we can stay up late and watch silly movies. So we can have some more midnight snacks. So we can play video games and laugh at how terrible I am.  So we can have late night Target runs for a new toy or 2 or 3.  So we can have another war with his toys. So I can make him pińa coladas while he plays in the pool with his sister & brothers.  So we can go to the flea market and scour the entire place looking for blue toys.  So we can go see inappropriate movies and  I can cover his eyes and have him yell at me. So we can sing in the car.  So we can dance in the bedroom.  So we can jump on the bed.  So we can eat blue cotton candy and blue snow cones.  So we can drive around looking for new toy stores.  So we can argue over whether Ruby is Max’s mother or sister.   So we can go out for pizza. So we can watch Spongebob.  So he can dress up like the Blueranger. So he can be Captain America again. So we can have another birthday cake. So we can find another little toy to collect.  So we can go to Disney.  So we can ride the waverunners.  So we can play Club Penguin and feed his Puffles.   So I can cook him his favorite steak.  So I can read him 5 books before bed.  So he can stick his head out of the sunroof when we pick up Sergio from school.  So he can win at every game we play.  So he can ride his car around the house.  So we can visit Papi and play with Johnny.  So we can buy some more Red Bull.  So he can make me read more books about bugs just to see me cringe.  So we can watch Jaws again.  So I can kiss his sweet soft head.  So we can count the freckles on his nose again to see if there’s any new ones.  So we can go for a walk.  So we can shop for blue toys online.  So we can cook 15 different things for dinner. So we can go to the park.  So we can go to New York and visit all his favorite places.  So we can fall asleep on the couch.  So we can eat ice cream for breakfast.  So we can eat pizza for lunch and dinner. So he can tell me again how he was going to marry me when he grew up.  So we can fight over who loves who the most again.   So I can kiss his cute little nose.   So he can give me 4 inches of bed space again.  So I can make him another bubble bath.  So we can order room service.   So we can barbecue his favorite food.   So he can eat chocolate cigars.  So he can make me watch horror movies and not let me close my eyes.   So he can tell me how beautiful I am and I can tell him how handsome he is.   So I can hug him and never let go………………..

So we can decorate his little blue Christmas tree…….

So I can wake up on Christmas day, kiss him and see the excitement, happiness and joy in his eyes………..


Christmas FB

A Hurricane, PTSD, & SAL September 23, 2017

Posted by Waking Up With A Broken Heart in Infinite Pain, Love & Grief, Love & Pain, PTSD after Childhood Cancer.
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Hurricane Irma was devastating on so many levels.

Most of the state was evacuated. Some people evacuated 2 to 3 times running from the storm. Here in Miami,  I happen to live in an evacuation zone right on the water. We were told the storm surge could reach 10 to 20 feet. The decision to leave was a very difficult one for me. The thought of losing my baby’s things was something that I just couldn’t grasp.  You see, his belongings, his toys, his blankies, his clothes, everything he owned is in that house. It’s all I have left of him. I will never EVER have anything new that he loved, that he had touched.  The turmoil that I experienced was just incomprehensible.  I live in pain every day of my life, but what happened in the days leading up to Hurricane Irma, well, it’s so hard to describe. The gut wrenching feeling, the exasperation and anguish, the physical pain caused by mental exhaustion is difficult to describe.

We secured our house as much as possible.  I wrapped as much as I could in plastic and stacked what I was able to up high in case the house got flooded due to the storm surge. There was no way I could wrap everything, It would be impossible to raise everything up. This new house we moved to is only one story and we weren’t sure how it would hold up in a Category 5 hurricane.  The thought of the roof being ripped off of our house and my baby’s things being blown away, well it’s a feeling that only another mother who has lost a child could possibly understand.

Yes, material things are replaceable as they say, for most, but that is not true for me. Sal’s things are NOT replaceable. His favorite street sharks, his toys, his clothes such as his favorite jeans and blue shark shirts, all his dozens and dozens of blankies that he cherished. His Power Rangers, his Captain America toys, his favorite videos, all his different collectibles as well as all his handheld games. Those are not replaceable. The unseen fingerprints on everything he touched, the clothes he wore, his blankets that he always carried that made him feel cozy and warm. Those things could NEVER be replaced. They are the only things I will ever have.  I couldn’t  bring it all with me. I did the best I could.

As I apprehensively walked out the door with my loving family, tightly clutching my precious baby’s ashes (which is not normal and also another beyond devastatingly difficult thing to do) and leaving his cherished belongings behind, I asked him to please take care of his things because I couldn’t bear to lose any more of him. I realize no one truly understands. Even those especially close to me couldn’t and will probably never totally grasp the extent of my excruciating pain and anguish. The 48 hours I was away from home with the wind blowing and howling as if it were to rip apart the massive and strong building where we were staying, felt like weeks. All I wanted was to take my baby’s ashes securely home and check on his things. I knew my kids were safe with me and anything that happened to the house could be fixed. I knew the power  would be out but would eventually be restored. I knew trees could be replanted, fences could be repaired.  But my treasures could NEVER be replaced.

Finally, we were able to get home. I was born in Miami Beach and have lived thru many hurricanes, but driving thru the devastation and flooding in the neighborhoods this time truly was eerie.  No power anywhere, giant trees uprooted blocking city streets, power lines down, sunken boats, and debris everywhere. Finally, in what seemed like hours although it was only minutes, we arrived home.

It was as if there had been a dome covering my home. No damage, no flooding……..the angel wing pool float along with the others were still in the pool. With hurricane force winds lashing all around our Miami home for 48 hours there could only be one explanation. Sal stayed home to guard his things for me. It’s the only possible explanation. #ThankYouSal

My Life……… January 29, 2014

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My life is dedicated to saving all these precious suffering children………..

My life is dedicated to doing everything I can to making their time in treatment as “fun” as possible………

My life is dedicated to raising awareness of the “HELL” called Childhood Cancer………

My life is dedicated to finding a Cure………

My life is dedicated to you my precious baby…………..

IMG_5644 Our last Christmas together 2010

Miami Childrens Hospital Oncology party.

They made this a very special day for you, didn’t they??

Because of you……….

We now have Family Fun Night every week on the inpatient floor of Miami Childrens Hospital, Once a month our Mystic Force Foundation sponsors it. Mommy & her amazing volunteers bring decorations, music, crafts, goodie bags loaded with candy, snacks and drinks, LOTS of toys donated by amazing people & companies,including Enyd, Derek’s mommy & her Derek Marcos Never Give Up toy drive, Jakkks Pacific, the Ty Company, Pat & Charlene Hazzard and so many others. We bring food also donated from some of your favorite restaurants and people who care so much, your favorite Superheroes have joined us and of course your favorite doctor……”Guillermo” is always there.  We bring love, fun and laughter, just what you would have wanted. I always feel your presence, no matter how difficult it becomes, I know it’s what you would want me to do.I know this is what you would want.

I see your smile and your laughter in all of these amazing kids.

DSCN1619IMG_5166 IMG_51591st Family Fun Night 1st Family Fun Night 2DSCN1603 DSCN1573

IMG_5749IMG_5181 IMG_4356       DSCN1586 DSCN1581 IMG_5746 IMG_5679 IMG_5681 DSCN1530 DSCN1471DSCN1495IMG_5675

He reminds me so much of you………. You must have told him to dance for us…………

MCH Nov Fun Day  IMG_4982Family Fun Night DecemberDMNGU toy drive 2014Family Fun Night January



My True Love

Seconds in the actual realm of my reality…… March 10, 2013

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Next week, March 19th will make 2 years that you are gone….. that’s  24 months, 730 days, 17,520 hours, ….. no matter how you look at it, its a long time. An eternity really,   but,  just seconds in the actual realm of my reality. I hear your voice calling me from across the house……

“mooooooooommmmmmmmm”……. I look up, anxious, then realize it’s not really you.

I’m cooking dinner, I glance and see you sitting at the bar playing on your iPad…then you are suddenly gone…………….

I go to your room, I lay in your bed, I hug your Build-a-bears…….. I go in your closet, my fingers caress your shirts that hang so neatly, waiting to be worn……………

I look at your toys, your most prized possessions that Sergio guards for you…..but you will never return to play with them will you?????  What will happen to them when Sergio grows up?????????????

What will I do with your “stuff” ?????? I know I will keep it all………. but when will you be back???? When will you come play again??????? When will we cuddle in bed and watch midnight movies??????? When will we have midnight snacks at 4am???????

Can it really be that this will never happen again…….REALLY????????

That’s so hard to accept.

I walk past your pictures, kissing each one as I pass, my lipstick stains on every frame……………..it’s just not the right…….

I talk to you as I drive…………. punch buggy blue, yellow or white…………. did you see it?

“Mom, what did you say?”….. “Oh, nothing,…..I was talking to Sal”………………..

Do my kids think I’m crazy? Do they understand?

Will they remember their baby brother 10 or 20 years from now? Will they remember his laughter? His fighting spirit? How much he loved Club Penguin? His love of music? How much he loved Pitbull? How much he loved to dance? How he always wanted to go out to a Chinese buffet? Will they remember his favorite color was blue, or that he loved to watch Spongebob & iCarly? Will they remember he was the blue Power Ranger? Or that he was Captain America? Will they remember his 80 birthday celebrations? Will they remember his love of swimming and pina coladas in the pool? Will they remember his voice as he sang I am Blue………………..

What will they remember???????????

How do I keep them…………..or anyone……………… from forgetting……………

How do I get people to think of you every day? How do I get people to understand how devastating Childhood Cancer is?

How do I go on living without you?


My Broken Heart……. July 20, 2012

Posted by Waking Up With A Broken Heart in Love & Grief.
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Have you ever woken up with a broken heart?

Have you ever felt as if all the blood has rushed out of your barely beating heart and your lungs are about to collapse due to the agonizing pressure?  Have you felt all the life leave your body and you lay there without an ounce of strength, barely able to breathe from the seething pain………….and hardly able to raise a limb?  You see people all around you, but no one seems to notice….. they go about their lives – oblivious to the dire state of your gravely broken heart. You somehow learn to live with this torment, this numbness, this acute sense of deprivation that very few understand. You live each day as you have to…….only partially conscious, going thru the motions as you have to until it is time to sleep……… you find yourself begging for sleep, that unconscious state where you feel no pain…………..

The world continues to revolve, the sun continues to rise, humanity continues to evolve…………….yet, for you, time has come to a halt…………..never to advance again.

Can you imagine living with this burning affliction day in and day out?

This is my life now……….

I was not shot in the heart as many of you may have assumed.

I am the victim of a broken heart from grief.

This blog is just a collection of random thoughts thru my eternal struggle to survive with out my true love, my amazing baby…………

Salvatore Antonio Vanni

Aprill 22, 2007 – March 19, 2011

Eternally 7

Those of you who know me, my husband or have followed my caringbridge site know of my agonizing plight over the last 5 years. For those who don’t I will recap…….

My baby was born full term & healthy, weighing 8lbs, 20in on April 22, 2003. He was a very happy healthy baby and toddler until one day in August 2007 when he suddenly said his leg hurt. We attributed it to a fall from a grocery cart a few days before. An xray revealed no abnormalities, or at least that is how the radiologist read it. Within a week my precious baby could no longer walk. Blood work ordered by his pediatrician thru my husband showed many abnormalities and I remember it seemed we were suddenly at Holtz Childrens Hospital, where he was sent for scans and a biopsy. My head was spinning, I didn’t understand, I was told to hope for Juvenile Arthritis but to pray for Leukemia. What? How could this be? He was fine a few days ago…….. He was running around with Sergio like a normal 4 year old……how could this be happening?????? I didn’t understand…… I still don’t understand……

On September 10, 2007 we were given the diagnosis of Stage IV Neuroblastoma cancer, with very little hope of survival. 20% chance to live 5 years they said…..can you imagine???? How could this be happening?????? The very next day my husband and I left our children with family and flew to New York City to Memorial Sloan Kettering Cancer Center, to the Neuroblastoma experts of the world. The rest, as they say…………….is history……

The following 3 & 1/2 years, in over 6 states, my baby went on to have 12 surgeries, over 55 cycles of chemotherapy, 50 rounds of radiation, and over 400 days of inpatient hospital stays. He went into renal failure several times and underwent numerous torturous toxic treatments. He had a scar from his original tumor resection surgery that reached from his mid back across to the front of his body down to his groin. Can you imagine your baby being split in half to remove something so lethal????? At only 4 years old????? 

He coded and died on the table at one point in 2010 after an extremely toxic experimental treatment in Philly, he was intubated for two weeks but somehow miraculously survived. I was then given an extra 6 months to say goodbye. I did not know that at the time. I was sure God had to give him the cure we so desperately seeked after all he had just gone thru. I was so wrong. The following 6 months were mixed with happiness, pain, joy, and more pain & suffering until finally his little body could take no more and he died a very slow and agonizing death on March 19, 2011 at 12:10 pm, laying on my lap in Holtz Childrens ICU surrounded by all the people he loved and loved him. I watched my baby take his last breath and wished with all my being I was taking mine at the same time.

This is why I have a broken heart………………

This is why each day is an eternal struggle to survive…………

In my baby’s short 7 years he taught me the true meaning of LOVE, COURAGE and HOPE.  We were never apart during his short time on earth. There were times I went 2 weeks without taking a shower so as not to leave his side. We slept together wrapped in each others love and comfort, whether it was in a hospital bed, his NY apartment, a hotel room near a hospital or our wonderful home, we spent every waking & sleeping moment TOGETHER. We fought this evil disease like noone has ever fought before.

Now I find my self alone, but not physically of course.  I have my family…..a husband and 4 other beautiful children that I adore…… but my heart is broken. There is no longer the joy and happiness that once dwelled within me. I may smile and laugh but the darkness and emptiness within is always there. The void in my heart is overwhelming  and will never ever be filled.  

I look forward to the day my precious baby and I will be reunited and I now live each day for the signs he so regularly sends me. I am mad at God for taking him from me…….how could he do that when I was such a good Christian??? How could he punish me this way????? I lived a perfect Christian life, I taught Sunday School, I sent my kids to Christian school for 11 years, I prayed to God every single day of my life…….. How could he have made my baby suffer so???? How could he make me suffer like this for the rest of my life?????? How?????? Someday I may know the answer………….someday that could not come soon  enough….

Until then……………I will forever…………….

Wake Up With A Broken Heart…….