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3 Years??????? March 19, 2014

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3 years ago today on a Saturday @ 12:10pm my baby took his last breath…………………. laying on top of me in a hospital bed at Holtz Childrens Hospital P.I.C.U. surrounded by all of our loving family & friends, nurses & doctors. Everyone was staring at the monitor, the room was eerily quiet, or so it seemed to me. A few minutes earlier everyone sang Happy Birthday to Sal one last time, everyone (except me) knowing full well he would not be here for his next birthday. How could I have known that? I still believed he would never die. I whispered to him that everyone loves him and that they just wanted to sing to him because they love him. I didn’t want him to be scared. I don’t know how much he heard. I don’t know how much he understood, what he could comprehend. He was heavily sedated due to his extreme excruciating pain. Some of you may remember that his last words were ‘Momma, huggie”, and “I’m in so much pain, I need a new body” Those words are etched in my brain, my heart, my soul. How could my beautiful baby boy be in so much pain that he is wishing for a new body?? He’s only 7……….How is that humanely possible???????

I feel his oh so faint heartbeat against my chest as it very slowly stops, a short gasp and I hear my husband say, honey, he’s gone. The doctor comes over and puts his stethoscope on him, what????? Says the time…………..I start sobbing and screaming NO!!! Everyone comes to kiss him goodbye as he continues to lay on top of me and one  by one they leave the room. Slowly my husband sways me off the bed and asks if I want to bathe him one last time. How did I do that? I don’t know, It’s like it wasn’t me. The nurse asks if I want his fingerprints…..of course I do………It was surreal. I dress him……………My husband tells me we have to leave, they need to take him……… He didn’t want me to see what happens next…………Leave, I can’t leave him……………. I’VE NEVER LEFT HIM……EVER…….not for a second. We are always together……… we are supposed to be together forever………………….how is he not going home with me????? I still don’t know how I left. I remember falling onto the swail  telling my husband I couldn’t leave him, I just couldn’t. I couldn’t live without him. I remember him pulling me up from the ground telling me we had to leave. The HARDEST thing I have ever done in my life is leave that hospital without my baby.

I don’t know how I did it. I just don’t know………….

The days to follow are a blurr in some ways and so very real and clear to me in others. He came to me so many times to let me know he was okay……………….but I wasn’t, and I never would be. My husband took me to the funeral home every day …….every day for 3 days they would pull Sal out of the cooler he was in and put him in a room for me. I would talk to him, cry, lay on the cold hard table with him, hug him and kiss him……tell him how sorry I was that I could not save him. I asked him to send me a sign that he was okay and a tear flowed from his eye. My husband brushed it away hoping I hadn’t seen it, but I did…………..again, another tear……. I took a picture, which I cannot post because he would be mad at me…… He always had to look cool and wouldn’t want anyone to see him like that, although to me he was so very beautiful. The funeral director said that had never happened before………..

The third day my husband said this had to be my final goodbye………….. final….really?????…………. I dressed him in Stevie’s new Captain America tshirt that he so badly wanted to wear but never had the chance. I put his very favorite Captain America hoodie on him, the one that cost $75 that he said “don’t worry mommy I won’t tell daddy” when I bought it. We put one of his Street Sharks in his hand……….I layed down with him till I was told I had to go……………..then we kissed him,, we hugged him and we said our goodbyes to his physical body and left the room. Part of me stayed there with him. The part I will never ever have back.

The next day we all flew to New York and packed up “his apartment”…..then we came home to plan his Memorial service, his “Celebration of Life”. (He was cremated so there was no burial)

The service took place at Sheridan Hills Baptist Church. Although we are Catholic, all of my kids had attended Sheridan Hills at some point in their lives, Stevie for 11 years. The others for pre-k.  Sal said if he ever had to go to school that is where he wanted to go, because of course, they are the Sharks. While planning his service I had a lot of his favorite songs that I wanted to play to a collage of his pictures. Many…..Most, not appropriate for a 7 year old, let alone a church. Of course they are so wonderful, they said they didn’t care……whatever Sal loved, they would play. So we proceeded to play Hotel Motel by Pitbull, Girlfriend, I kissed a Girl, Highway to Hell, Dynomite and so many other songs that were his favorites. Over 750 people attended his service, people who loved him from all over the world……………… I don’t even know how some of them were able to get there, but they did because they loved my baby…………….and I will never forget and always love them for that.

To all of you it was 3 years ago, to me it was 3 seconds. The physical, mental & emotional pain is beyond mortal comprehension.

I hope everyone thinks of my baby at some point today, my worst fear is that people will forget him. If I die tomorrow who will think of him??????? Who will keep talking about him???????? Who will keep his memory alive?????????????

Papo mommy loves and misses you so much………… forever & ever………. You will always be my baby……………

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Salvatore Antonio Vanni

April 22, 2003 – March 19th 2011

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.

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

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I WILL FOREVER DO EVERYTHING I CAN TO SAVE EVERY CHILD I CAN AND MAKE THEY AS HAPPY AS I CAN…….

FOR YOU……………. BECAUSE OF YOU……………

My True Love

Someday……………….. November 5, 2013

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How can I possibly go on living without you…………………..

You were my bestfriend,  my baby, my true love, my everything.  There wasn’t a moment in our lives that we weren’t together, then in a split second you were taken from me. I don’t know life without you.  Everyone around us always had a “life”, everyone………. every single person I know had a “life” beyond what we were going through………………………………… they have no clue what our life was about…………………..

But My life was yours and yours was mine…………… Now it’s just me……………………………………………..

AND IT’S SO UNFAIR, IT’S SO TERRIBLY PAINFUL. MENTALLY AND PHYSICALLY AND EMOTIONALLY AND PSYCHOLOGICALLY

It’s like having your baby ripped out of your hands and taken…….FOREVER…… how does that happen

Does anyone even understand the depth of the word FOREVER????????

I would give ANYTHING to still be in the “fight”, as horrific as it was. To be getting a transfusion, to be laying next to you while the poisonous chemo is running thru your veins, to be nervously waiting for scan results. to be planning the next state we would be flying to for treatment, to be nervous about meeting your “new ” oncologist, to be fighting back the tears as I hold you down for some ridiculously humiliating procedure……anything to have you in my arms and still have HOPE for tomorrow…………

Is that selfish of me??? I’ve never, ever been selfish…..my life has always been about everyone else.

But right now my pain is so great that I would JOYOUSLY be selfish.

I don’t struggle to hold back the tears, as they constantly flow freely from my eternally swollen red eyes. I smile,  I laugh, but inside my eternal struggle is so great that I feel the blood drizzling out of my lifeless heart……how have I not died from a broken heart yet?  How have I survived this all consuming torture?????

How appropriate is it that our song just came on………………… You just wanted to see me smile, I know……………………….

 

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I know someday we will be together again……….someday………………………

Someone Asked Me How I Was Today…………….. June 2, 2013

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Someone asked me how I was today…….

 

 

 

Really????

 

You want to know how am I???

 

Do you really want to know how I am or do you want me to just say

 

 

“I’m great,

“I’m okay”,

“Not bad”

“Things are good”

 

 Or do you want to hear the truth???

 

 “Life is sheer torture”

“It’s hard to breath”

“Everyday things are nearly impossible”

“I am in constant physical pain”

“I wish life would go by faster”

“It’s excruciatingly painful to wake up”

“It’s excruciatingly painful to go to bed”

“I feel guilty with every smile and every laugh”

“I can’t stop crying”

“I wish I had died with my baby”

 

 But I do love you for asking……………………

 

 The truth is,  life is difficult,   life is complex,  but,  somehow,  life goes on………………….

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Everything Reminds Me Of Something…. May 5, 2013

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Everything reminds me of something…………………………..

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It doesn’t matter what we are taking about, it doesn’t matter what it has to do with…..

 

EVERYTHING reminds me of something that has to do with Sal…..EVERYTHING.

Say a word, any word…………………… A memory instantly pops into my head….

 

RED,   One day he wore a red sport suit to the hospital (he never ever wore anything but blue)  the nurses went crazy and told him how awesome he looked, how sexy, how handsome….. I am telling you, everyone had something to say. He just thought he was the coolest thing on earth (and he was!)

 

Snake,  One day leaving Miami Children’s Hospital there was a snake in the middle of the street. He made me stop & get out of the car to shew it into the bushes so it wouldn’t get run over by another car.

 

Party, Every day was a party for Sal. It didn’t matter what we were celebrating, we would have a cake and celebrate.

 

Police, Sal loved his policeman friends, He loved wearing a police badge and hat and one day he thought it was so cool, he rode in Pete’s police car looking for a “bad kid”.

 

Asparagus, That was one of Sal’s all time favorite vegetables.  He loved every vegetable, he ate peppers and onions like most people eat apples, but asparagus was his favorite..

 

Boat,  Sal loved the boat.  There were 2 things he wanted to do when we were allowed to come back for the first time after 3 months of treatment in New York on Dec 31, 2007, one was go to Costco, the other was go out on the boat.

Snow,  Sal just finished a very tough round of ultra high dose chemo in NYC. We walked out of the hospital and it was snowing. We walked across the street to the park and he had a blast playing in the snow, going down the slide at 100mph. He was soaking wet. I was terrified he would get sick. We literally finished chemo an hour ago and he was soaking wet in 20 degree weather. I had to put him in the cab screaming and kicking cause he wanted to continue playing………….

Just say a word, any word and I will give you a memory………………………………..

 

My entire life now revolves around memories. Sal & I will never make new memories.  I realize now, that I will forever live in the past. I will forever live in my memories of my precious baby.  There’s no way to go on, there’s no way to change the present. I will forever live in the world of 2010/2011.  My last of everything…….

 

I follow so many cancer kids stories. My life revolves around them now. I want to help them, I want to save them. I want to keep their parents from feeling like I do right now.

 

But, honestly, I would give anything to still be fighting right now. To still be looking for the next new treatment, to still be getting a blood transfusion, to still be scheduling scans, to still be waiting for results, to still be inpatient, to be booking our flight to the next new state, …..……… to still be any part of it…………….

 

Is that selfish of me?????   I never wanted him to suffer, but I still want to be able to hug him, to kiss him, to still have hope for tomorrow……………………………….….  Reallly……………….how is it possible that he’s not here?  How is it possible that I am downstairs in my office just typing aimlessly and he’s not here????????

How do I start to really understand?????   When will I start to understand???????

 

Life goes on around me…… Everyone continues as they were……………

No one seems to notice the emptiness………..……no one seems to understand the depth of the pain in my heart………well,………. not no one………..some do…………  the ones that laugh and cry at the same time with me. The ones that say his name when they know I need to hear it. The ones that hold my hand when they see me struggling.  The ones that tell me a memory when I need to know someone remembers………  But how long will that last…………… How long will they really remember??????

 

I haven’t gotten past the first few seconds of his death. I haven’t accepted it. I haven’t learned to live with it. I haven’t acknowledged the whole enormity of it………..

 

I had a terrible experience at my pediatrician’s office the other day, such that I do not want to relive by telling you.  But, I was then reminded of how people forget…….…

 

To everyone else it was 2 years ago………………………………..

To me, it will forever be 2 seconds ago………………………………………………………….

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Easter & God & Miracles March 30, 2013

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Easter is a time to reflect & be thankful, right???

 

I believe in God…..

 

I believe Jesus is the son of God……..

 

I was baptized as a Catholic…….raised as a Christian.

 

I taught Sunday School…..

I went to church regularly…….

I grew up with the fear of God….

 I knew that if I did anything wrong, God would not like it…

 

So…..

I never lied.

I never disrespected my parents.

I never did drugs.

I never smoked pot.

I never purposely did anything that I thought would go against God’s rules.

I sent my kids to Christian School, Stevie for 11 years, Sammy & Adrian thru 1st grade, Sergio pre k 3 & 4 & Catholic summer camp with Sal who was 4 and then had just started pre-k 4 when he was diagnosed.

 

I know the bible inside and out. I was as close to a perfect Christian as any human could possibly be.

 

I have probably prayed more in my lifetime than any of you reading this right now.

 

Do I think God abandoned me? Do I think he purposely chose my baby to torture? Do I think he decided not to save my baby purposely? Do I think he ignored my pleas for help?  Do I think he could have saved my baby if he wanted to, but just chose not to? Do I think he wants me to live in pain the rest of my life? Do I think it was his grand plan in life for my baby to get cancer and die to prove something??? Do I think he would choose to save another child over mine???????

 

My answer is NO…………………. to all of the above.

 

I still believe in God, but differently.

 

Do I think if you pray hard enough he will listen? (obviously not).  Do I believe if I begged him enough he would listen?…..….

No, for I could not have begged & pleaded more than I did. 

 

I believe what happens in our lives is beyond his control. But, I don’t know why. I do know he would never purposely hurt any of us. He would never purposely hurt a child. He would never purposely make anyone, especially a child, suffer.  He would never grant one person a miracle and not another.  We are all equal to him, he loves us all the same.

 

In other words,………….. whatever is going to happen in our lives, is going to happen. That is what I believe.

 

We have to learn to save ourselves. Yes, we must be good, follow God’s laws, etc to get to Heaven. But miracles?  Definitely No,………………if anyone in this world deserved a miracle, it was my baby, it was Liam & Julian & Sam& Derek, Gus, Sydney, Melina, Ryan, Eric, Nick, Isabella, Ronan, Teddy and all the others who suffered the unimaginable. 

I know God loves me and I know I will go to Heaven…..whatever/wherever that may be. I know my baby is there, I know he is free of pain & I know he visits me frequently and is constantly somehow with me.  But, the God saving only those who believe, is 100% absolutely not true…………because NOBODY ever believed more than me.

 

God didn’t find a cure for over 80% of all breast cancers…………..…RESEARCHERS DID.

You know what that means………………

Happy Easter my friends………..  

I hope to dream of my baby coming to me for his Easter eggs and my very much needed hugs……

 

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Why I Can’t Think of Anything But Childhood Cancer……. March 27, 2013

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Why I can’t think of anything BUT Childhood Cancer…………

 

Because once Childhood Cancer enters your life it NEVER goes away……

Because Childhood Cancer doesn’t care who you are…..

Because Childhood Cancer hurts everyone…..

Because Childhood Cancer is painful and makes kids suffer…..

Because Childhood Cancer keeps me awake at night……

Because Childhood Cancer keeps a constant river of tears flowing from my eyes…..

Because Childhood Cancer affects every aspect of my life……

Because Childhood Cancer tortured my baby……

Because Childhood Cancer killed my baby……

Because Childhood Cancer has ruined my life…….

Because Childhood Cancer is a beast that needs to be eradicated………

 

That’s why I can’t think of anything BUT Childhood Cancer………..
 
 

My Eternal Struggle Continues…… March 18, 2013

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2 seconds….

2 weeks……..

2 months………

2 years………………

Is there really any difference? No….

Has the pain diminished at all?  No….

Has it lessened like a wound as it slowly heals?  No……

WHY???  That’s all I want to know……… Why were you taken from me??????………

Early this morning I had another dream, one I did not want to awaken from………
 
Sal came to visit me. I knew he was coming from Heaven as he has visited me so many times before in my dreams. We were laughing and singing and shopping and dancing and eating…………… All his favorite things.  It felt like it lasted for hours, yet not long enough.
 
I knew he was just visiting so I tried hard not to wake up, somehow, I knew I was just dreaming, but it was okay because he was here with me……..the only way I can have him now.  Is this my mind playing tricks on me? Or, is this really my baby visiting me every time he knows I am in total utter despair and feel like I can’t go on???  I wish I knew it was really him. He always worried about me, he always cared so much how I felt and did everything he could to keep me happy………. Can you imagine, thru all his pain and suffering he was always worried about me……..his mama…… always telling me he loved me more……….

The pain of losing my baby, my bestfriend, my true love………….. is not just emotionally but

excruciatingly physically painful.

SALVATORE ANTONIO VANNI

April 22, 2003 – March 19, 2011

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LOVE YOU FOREVER PAPO…….KEEP VISITING ME IN MY DREAMS………I NEED YOU STILL…….
 

 

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?

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LIFE WILL NEVER BE THE SAME…….. February 21, 2013

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NO………………

LIFE WILL NEVER BE THE SAME…………………..

EVER……..

 

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