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Daniella’s Wish February 27, 2015

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Daniella’s Wish

What it means to me………

Sal taught me how important it is to live life and be happy every moment possible. To never take a day for granted, to never dwell on the unhappy parts of life. He taught me how important it is to celebrate each and every day on this earth. His love of life, his love of parties, of food, of music and of dancing inspire me to do all the things for others that he loved to do himself. 

Daniella is a precious 2-year-old girl battling High Risk Stage III Neuroblastoma cancer. When Daniella was going thru her stem cell transplant, as she lay in her hospital bed for weeks, unable to eat or drink due to the ulcers in her mouth and going down her esophagus (and more); side effects from the harsh chemo, her mom, trying desperately to think of the better days to come, told me she wanted to fix up the yard & get a swing set so Daniella could go outside when her counts permitted. (At that moment I saw myself in her eyes, wanting to take away my baby’s pain and wanting to make my baby happy, any way I could. It was all that mattered to me)  As Dania and I were discussing this “playground”, Dania was thinking a backyard swing set with a Barbeque grill.  I, on the other hand, was thinking a wood deck with a wooden swing set over soft pliable turf so that if she falls she doesn’t get hurt. (Very important when your platelets are always low due to cancer treatments.) I pictured a play area free of dirt and grass that harbor germs, (very important when you are continuously immunocompromised) a place that no matter what she was going through she can walk outside and have what every child should have……..a place to play and be a child. A place to get away from the every day torment of the cancer world.

THAT WAS MY VISION……..

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I will never forget the time Sal & I were away for treatment for a few months and when we came home his daddy had put up a wooden swing set with a slide for him, he was overjoyed with happiness. The look on his face is something I will never forget. For the next few years, when we were home from whatever state he was being treated in at the time, he would spend hours outside. When he didn’t feel good we would just swing. When he did feel good you would see him climbing the little rock climbing wall, sliding down his slide or having lunch with his BFF Chase in his little clubhouse, which also served as his hiding place when he was playing Nerf gun wars with his brothers & sister. 

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Sal’s last gunfight 2 months before he died.

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Home from 3f8 treatment at Sloan Kettering in NY. One year into active treatment Fall 2008

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Happiness……

I knew just buying or getting a swing set donated for Daniella was not enough. So, as usual, I thought big, I thought who could do this for me? For Daniella? I knew whom I wanted to ask. After several emails & Twitter direct messages Ahmed Hassan, Celebrity Landscaper answered me. I’m sure he thought I was crazy, this woman from Florida he did not know, from Mystic Force Foundation, a charity he had never heard of, asking him to fly across the country, build what I described as a germ free backyard playground oasis & do it free of charge, solely thru donations.  All for this very special little girl that he had never met……. But, I asked & sent pictures and when he replied, I knew.  I knew Ahmed Hassan was going to do this. Because I knew, somehow, he would love Daniella & would want this for her as I do, just by looking at her picture and feeling the love & need to do this.  We went back & forth several times, trying to figure out how to accomplish this, with urgency. I know from experience that there are a lot of wonderful people in this world, many, who could help us grant this Wish.  I know this because it is what I do……EVERY DAY………ask people to help me make others happy.

Ahmed Hassan, Celebrity Landscaper

Ahmed Hassan, Celebrity Landscaper

We started a Thoughtful.org page for Daniella and within hours we had thousands of dollars donated from people wanting to help. The amazing Southwest Airlines agreed to help with Daniella’s Wish and are donating the tickets for Ahmed and his designer, Duane Draughon to fly in this coming week to look at and start to design Daniella’s back yard play space. Miami Springs Mayor Zavier Garcia has worked out the hotel stay being donated by the beautiful EB Hotel  and car rental has been provided at a discount from Hertz. Dr. Guillermo, DeAngulo, Daniella’s oncologist (& Sal’s!) will be meeting with us so that Ahmed can better understand Daniella’s disease and needs around the space. I will also take him up to 3North so he can see where our kids spend so much time……so much time having life saving poisons infused into their little bodies. Where they spend weeks to months at a time recovering from these torturous treatments.

THE FLOOR WHERE REAL LIFE HEROES CAN BE FOUND.

As I sit here typing this with tears streaming down my face, I know my baby is next to me telling me “don’t be such a baby” (what he always said when I would cry) and telling me to be smile because we are about to make Daniella VERY HAPPY….

So that is what Daniella’s Wish means to me…..HAPPINESS…….because Daniella’s Wish won’t last for a week or two, no, it will bring her continued joy and a lifetime of happy memories. It will bring happiness to Daniella’s mom, Dania, my friend, such joy & happiness to see her baby happy. And, I know how important that is………..

Anyone wanting to help grant Daniella’s Wish, either through *monetary donations, volunteering the days of installation, donating items or anything else, please feel free to contact me. Silvia@MysticForceFoundation.com

 You can follow Daniella’s story @ www.TeamDaniella.org

*Monetary Donations on Thoughtful.org for Daniella’s Wish will not be issued a tax receipt as this money is being used for expenses for anything not donated to build the playground. Any monies remaining in the account will be donated to the Mystic Force Foundation for Childhood Cancer Research.

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BE THANKFUL FOR THE FIGHT February 19, 2015

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I often, no, I CONSTANTLY, wonder what life would be like if Sal were here. My amazing, happy baby who loved to sing and dance, who loved Pitbull and Spongebob and Power Rangers & Captain America & Street Sharks.
My life always revolved around him. I have not one regret in how I treated him, what I did for him, where we went or what we did. I dedicated my life to making him happy and doing EVERYTHING I/we could to cure him. I did everything to keep him happy, every second of every day.
I know somehow he is leading my life in the direction I am going.
Some people don’t understand, and that’s okay………I NEVER want them to understand.
To all my friends who are going thru what Sal & I did, I tell you all…………alll the time………and always will………….
BE THANKFUL FOR THE FIGHT……
BE THANKFUL FOR TOMORROW…………
BE THANKFUL FOR THE HOPE THAT LIES AHEAD………..
Because there is HOPE
I LOVE YOU…………….

Sal FB

Valentine’s Day February 13, 2015

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It’s Valentine’s Day…..

My kids have always been my Valentine’s……

Stevie is 23, my first true Valentine…….when life was easy & carefree and fun. I continued to have babies, adding new valentines thru the years…… five of them……………….five amazing healthy beautiful valentines.

Life was amazing…………everything I ever wanted & more………

Life was perfect then…………

Now, life is………broken…….

there is no other word.

My Baby Valentine is not here, and life is so excruciatingly painful & difficult…………

Somehow, some way, we learn to go thru the motions, we learn to wake up and breath……….. for the others……..

We learn to smile, a fake facade, the best we can do…………..

Days like today remind us of our eternal torment………….

But we will continue on this eternal struggle thru life…………………

Because we have to…………………..

Because there are those who need us………………………..

Because it’s what we have to do………………………..

There is no right or wrong way to grieve, we all must do what we have to, to get thru each day, each moment and at times thru each second of life. For me, it is truly moment by moment……………………………

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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

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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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