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I Thought…… July 27, 2014

Posted by Waking Up With A Broken Heart in Family Fun Nights, Infinite Pain, Love & Grief, Uncategorized.
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I thought I would never walk into a hospital again……….let alone an oncology floor.

I thought I would never be able to bear seeing another child suffering cancer like my precious baby did.

I really never thought I could ever again touch or kiss the soft bald head of a child with cancer.

I absolutely never thought I could have a party with a room full of kids battling childhood cancer.

I WAS WRONG…….

Since Sal died I have dedicated my life to raising awareness & fundraising for Childhood Cancer Research. It is what I do every waking hour.

But, one year ago, while talking to Sal’s Dr @ Miami Childrens, we came up with the idea of having a weekly Family Fun Night for the inpatient kids. (Some of these kids are inpatient for weeks or months at a time) Sal had spent a lot of time at so many different hospitals and I knew in my heart he would really want me to do this, even though it was going to be immensely difficult for me.  Sal loved parties, he hated being bored, loved toys and he loved to sing & dance. So I decided to incorporate all these things into one night…….which is now our Mystic Force Family Fun Night on 3North at Miami Childrens Hospital.

For a few hours one night a month we help these kids forget where they are and just be kids having fun. We fill the playroom with tons of toys, circling colored lights and play party music. We do fun crafts, we paint, we color, make bracelets and we eat delicious food. Sometimes we have Superheroes join us, sometimes we have local celebrities.

All of this is possible because of the generosity of so many individuals & companies who donate their time, who donate awesome toys and who donate the dinner each month.

HOW DO I KNOW I WAS WRONG??

This past week a very special little boy from Miami Childrens passed away. Alejandro was a beautiful, spunky, witty, Lego loving little boy. He was at most of our Family Fun Nights through out the year, which sadly, meant he was inpatient…..a lot. I know I was wrong, because, I know that I, along with my entire team of amazing volunteers brought this boy happiness when we were there. (as you can see from the video below) He sang & danced & picked out as many toys as he wanted, did crafts, played, ate delicious (non-hospital) food and of course we always brought him Legos. My dear friend Mara brought him super special Legos which, sadly, he never got to enjoy as he was already in I.C.U.  He will be missed by each and every one of us.

THAT’S HOW I KNOW I WAS WRONG…….

Now, as I pack up for tomorrow’s Nike Family Fun Night (because Nike donated the most awesome balls, bags & backpacks) I know I can do this, I know it’s what I have to do, what I must do, WHAT I WANT & NEED TO DO…………….. I must bring smiles & happiness, even if it’s just for a little while to these kids who suffer the unimaginable like my baby did.

(If you would like to help in any way, please fill out the contact form below)

 

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FFN June 2

 

Is it Really Mother’s Day…….. May 11, 2014

Posted by Waking Up With A Broken Heart in Infinite Pain, Love & Grief, Uncategorized.
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This morning many will all wake up and think of and be thankful for the moms that gave us life.

We will thank God for all the blessings in our life,

For the beautiful children we have raised.

BUT………

Some of us will hesitantly wake up

We will somehow get out of bed and wash the tears from our face……

We will go thru the motions of the day……

Waiting impatiently for the day to end.

We will smile and pretend that we are okay.

We will laugh when we have to,

Cry when we need to.

 

We will remember every single second of every single Mother’s Day we have spent with our precious children.

Then will remember how many years, months, days, minutes……seconds…..it has been since we felt our baby’s touch. How much we yearn to hear our baby’s voice. How much it hurts to know they will not be here today.

Today is Mother’s Day……

 Hug your mom

Send prayers to your Mom if she is no longer here and be thankful for the time you had together…..

 

Hug your children, Kiss them, enjoy them, savor every second with them, remember every laugh, every smile, every funny comment……

Bask in the infinite love your children bring you. Feel glory in every trying time as you try to figure out what comes next, what is right and what is wrong.

Rejoice in knowing that your child is happy & healthy………..

Proclaim your love for them. Relax as you watch them play, etching every scene into your memory………..

Hug your children

Kiss your babies

Savor every second with them

Thank your God for your good blessings…..

Then remember those, like me, who long for what you have……………………..

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G R I E F May 4, 2014

Posted by Waking Up With A Broken Heart in Love & Grief, Uncategorized.
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GRIEF……

Per Merriam Webster, the definition of grief:

grief

noun \ˈgrēf\

: deep sadness caused especially by someone’s death

: a cause of deep sadness

: trouble or annoyance

 

Sadness?????  It is way beyond Sadness…….

I can honestly say that is not my definition of grief.  

But then again, how would one begin to describe the sheer, gut wrenching, knife stabbing, all encompassing pain of losing a child?

How do you put into words the never ending torment? The never ending torture? The never ending longing for someone that is still a part of you. How do you describe in words the physical pain?

YOU CAN’T………….

Because there are no words to describe the pain and suffering of a mother who has lost their child.

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

Posted by Waking Up With A Broken Heart in Uncategorized.
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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

Posted by Waking Up With A Broken Heart in Love & Grief.
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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

Posted by Waking Up With A Broken Heart in Uncategorized.
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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

Posted by Waking Up With A Broken Heart in Love & Grief.
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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………..
 
 
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