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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………………………

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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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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Un-Valentines Day February 13, 2013

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How could tomorrow be Valentine’s Day and you are not here????    It’s just not possible.    I spent the entire day crying and trying to logically understand it. Yesterday I went with Shari to buy decorations for Chase’s desk at school. I should have known better. It’s just not fair………………

You should be in Chase’s class. I should be decorating your desk and you should be in the basketball game tomorrow night with him. We should all be together.   I should be waking up to hugs and kisses and pretending that I didn’t know you bought me a card and chocolates………… You & Chase should be “secretly”  trying to steal our champagne tomorrow night………….

What will I do tomorrow morning……….. How will I possibly get up and survive the day without you?????

How will I continue to breathe tomorrow??

How??????????????????????????????????

How can this be. I still don’t not only, understand this, but I have yet to accept it. How could I??????

We always celebrate Valentine’s Day together. You are always my Valentine and I am one of yours……. along with Stephanie and all the nurses at the hospital. How can it be that we are not delivering chocolate hearts this year? How is it that you are not being too shy to hand over the carefully selected boxes of chocolates for all you “girlfriends” and making me do it????????

How is it that we are not snuggling in bed at this very moment awaiting the arrival of Valentine’s Day…….. One of our favorite holidays…… how???????……………..

It’s just so unfathomably unfair and so debilitatingly painful…………

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How I wish I could hold you and kiss you one more time…………..but that wouldn’t be enough,   would it my beautiful baby????………………… 

Nothing could ever be enough…………………..

2012 Accomplishments & More November 28, 2012

Posted by Waking Up With A Broken Heart in Love & Grief, National Childhood Cancer Awareness Month, Uncategorized.
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2012 Accomplishments

  • Get out of bed & dressed EVERY morning  (85% accomplished)
  • Walk For A Cure 2012 @ Oleta River State Park
  • Fit For A Cure @ Fitsource Club for Women
  • Mix, Mingle & Mangia for a Cure / Meet & Greet the Mayor & First Lady of North Miami Beach @ Racks Soprano Bistro & Cafe
  • Pizza, Pasta & More for a Cure @ Anthony’s Coal Fired Pizza
  •  PicturesOnGold.com developed a line of Childhood Cancer Awareness jewelry and partnered with the Mystic Force Foundation to donate a portion of all profits from this line to our foundation
  • Nominated & accepted to NAC Contracts For A Cause
  • WSVN 7 (FOX affiliate) News Special entitled Mothers Mission which aired during the 5:00 news and then again during the Stand Up 2 Cancer National Telethon
  • City of North Miami Beach proclaimed October 16, 2012 the official Salvatore Vanni Day, presented with the Proclamation and plaques at the city hall meeting by the Mayor and Commissioners
  • Superintendant of Miami Dade County Public Schools, Alberto Carvalho (the nations 3rd largest school district) passed Resolution No. 12-155 honoring the life of Salvatore Antonio Vanni and promoting Childhood Cancer Awareness whereby adding lessons on Childhood Cancer to schools curriculum so all children will learn of the prevalence of Childhood Cancer along with other instructional lessons
  • Accepted The Ancient Spanish Monastery Foundation’s nomination honoring my husband & myself for “distinguished achievements and contributions providing a legacy for exceptional leadership in S Florida.”   Black tie affair takes place April 13th 2013

Some of these things were very difficult to achieve, such as getting out of bed EVERY single morning. It would be much easier to just sleep my life away because during sleep you feel no pain, physical or emotional.  But, I know I have 4 kids that rely on me every day as well as thousands of others who count on me for Hope for their future. I can’t let any of them down. I also know Sal would not want me laying in bed crying for him.

He never wanted to see me cry.

The article in the Miami Herald was another great feat. I wrote to every single journalist whose email I could find. My only reply was from Joan Chrissos, the Health Editor. This was her reply to me:

Dear Silvia,

Thank you for your email. We know this an important subject – in fact, childhood cancer was the front page story in our Special Health Reports on cancer, which was published on July 15, 2012:. http://www.miamiherald.com/2012/07/16/2897761/hope-on-the-horizon.html Given that we just published a large story on this subject, we would not be inclined to publish another story so soon. That said, we will look to see if there are any other developments that warrant another story.

 Sincerely,
 Joan Chrissos
Those of you who know me, know that that was just NOT an acceptable reply by any means, I emailed her back,
Dear Joan,
Thank you so much for responding to my email. I did see that article which was wonderful coverage for a disease that most people think of as taboo to speak of. And although you did a story in July, are these kids not worthy of another story during the most important month for childhood cancer? 
Next month will be breast cancer awareness month and you will see pink everywhere, you will read stories every day about breast cancer survivors, those still fighting and those that lost their battle to this disease. But because of so much awareness thru out the last years with the Susan G Komen foundation there is now over an 80% cure rate for breast cancer. That is wonderful and outstanding. Why can’t we do this for all the children? Are they not worthy of this type of awareness? Have you personally ever been touched by a child with cancer? Has your child ever begged you for help from the pain and suffering they were feeling? Have you ever held the hand of your dying child?
I would not wish those things on any parent. That is my mission…..to keep ALL children from suffering like my baby did and ALL parents from feeling this knife stabbing pain that NEVER fades. EVERY day is a day to raise awareness which is why I do not understand your statement “That said, we will look to see if there are any other developments that warrant another story.” 
Why does Childhood Cancer Awareness Month not warrant another story??? Can you explain that to me please???
Do you know that before my baby was diagnosed I was told to pray for leukemia? Do you know why? Because there is an over 70% cure rate now for childhood leukemia. My child wasn’t so “lucky” he had a very aggressive, very common form of childhood cancer called Neuroblastoma for which there is no cure. Another cancer that has very dismal survival rates is Rhabdomyosarcoma. Do we just forget about these kids and only report on the ones that are doing well?? I don’t think so.
“With that being said”,…….. I will continue on my mission and continue to search for people that care.
Sincerely,
Silvia Dominguez Vanni
I forwarded both emails to the CEO of the Miami Herald with this reply:
Dear Mr Landsberg,
 
I sincerely hope that the the following reply from Joan Chrissos is not the opinion of yourself and others at the Herald. Your paper is one of the largest in the country and to say that Childhood Cancer Awareness Month does not warrant a story is absolutely appalling and unforgivable. 
I sincerely look forward to hearing from you,
Silvia Dominguez Vanni
He instantly emailed me back telling me that one of his senior newsroom editors would contact me.  That along with the barrage of phone calls & emails that Joan Chrissos received from all of my facebook friends accomplished my task of getting a story written……finally.

As for the Channel 7 news report…..well I sent out over 200 emails to every single reporter whose email I could find including all the sports and weather newscasters. I received only 2 replies. The first was from Carmel Caffero (Carmel on the Case), the second from Patrick Frasier (Help Me Howard); both from WSVN 7. Both conveyed their sincere condolences regarding my baby and both said they would forward my email to their health producer, Angela Carraway.  Angela, whom is a beautiful soul both inside and out contacted me immediately and set up an interview.

It’s so sad that it takes so much to get people to listen and to want to help. But it does not keep me from trying…..I keep forging on. My motto is ‘the worst that can happen is that it doesn’t happen’.  So I continue to tell my baby’s story, to ask for help, to pass out flyers & postcards, to ask for sponsorship, to ask for donations, to set up fundraisers, to do anything and everything in my power to raise awareness for these kids I so desperately want to save…..for all their parents I so desperately want to keep from feeling the pain I am feeling……for all the kids of the world…..even the healthy ones, because remember,  my baby was perfectly healthy, until the day he was diagnosed.

I know 2013 will bring many great things for our kids. I know 2013 will bring continued Hope for so many. I know I will continue my work, my eternal mission in life.

Please save the dates & join us for

Cycle/Walk of Hope for Childhood Cancer

June 9th 2013

A 60 mile bike ride thru beautiful Miami along with a 5k Walk and a Family Fun Day

Cocktails For A Cure

New York City / March 2013

(More details coming soon!!)

Please know that none of this could have been accomplished without the help of so many wonderful

friends, family members and volunteers.

 I love you all and will continue to fight for all ‘our’ kids.

I so very desperately wanted to save my dear friend’s beautiful baby. Derek & Sal were friends, treated at Miami Childrens Hospital, both with the same favorite oncologist, Dr. Guillermo DeAngulo. Derek never knew that Sal had passed away because we did not want him to be scared of having the same fate. We tried to save him, we did everything we could, both physically and spiritually but to our great sadness Derek Marcos passed away in October. His mom Enyd, my very dear friend is now on this mission with me.

“Help Us Find A Cure”……. November 9, 2012

Posted by Waking Up With A Broken Heart in Love & Grief, Uncategorized.
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“To truly understand the depth of the plea “Help Us Find A Cure” your life must be touched by someone who has a disease for which there is no cure. Only then will you feel the anguish and desperation behind each syllable. Please Help Us Find A Cure for Childhood Cancer so no other parent of a child with this devastating disease will feel this pain.”

Silvia Vanni, Sal’s mommy forever

Please Help Us Find A Cure……

Every day people tell me they understand and they know how I feel. That my baby is in a better place and that I should be happy he is no longer in pain,  That “there is a reason for everything”, etc, etc………….

Unless you have watched your child suffer the unimaginable, heard him screaming in pain, seen him being humiliated time and time again, listened to his cries for help,  or found yourself begging God for mercy………………YOU HAVE NO IDEA…….

I write this blog because it is an outlet for me. Because it lets me express the sheer torture I have to live thru each and every day.  Because some people want to know what it’s like for some reason………. Because it helps me to cope……….. Because I love you all and want you to know that although I am dieing inside, I am still alive………………

To some Sal “passed away” 21 months ago. To me it was 2 seconds ago………….I long to hold him, to kiss him, to touch him, to rub his soft beautiful head………….. The pain is as much physical as it is emotional.

How do I describe the depth of my pain?? It is pure inexplicable torture.  To have to live the rest of my life without my baby is just unimaginable to me.  I wake up and he’s not there, I go to bed and he’s not there…… How could that possibly be??? How could God have taken away my most precious possession? How???????  Why?????

I believe in signs, I always have.  I get many signs from my baby. You have to truly believe to see them and accept them.  I long for them, I LIVE for them now.

The Holidays are here. Do you realize how difficult this time is for someone who has lost a child? Halloween…..Sal’s favorite time of the year……………….it came and went…..without him.  (how could that happen????)  I know he would have been Captain America this year. Did I walk thru the Halloween section of any store?……..NO.  Did I go to Party City like I have every year for the last 20 something years of my life????………….NO

Did I buy candy for the kids that came to my door……Yes, …but none of Sal’s favorites.  Did I personally answer the door and see all the smiling happy faces????……NO………   Did I buy my kids face paint and whatever else they needed to enjoy this night?………….Yes, but nothing Sal would have wanted to use.

Thanksgiving is next…………………….

Sal & I spent Thanksgiving 2007 at Sloan Kettering Cancer Center in NYC.  He had just undergone a 12 hour surgery to remove the massive tumor in his body after 5 grueling, painful & torturous cycles of chemotherapy. His incision had barely healed by Thanksgiving……spanning from the middle of his back across to the front of his body and down to his groin.  Can you imagine??? He was only 4 years old and his body had been split in half to remove a lethal foreign body that would eventually take his life.

Thanksgiving 2008  we highly celebrated with 40 family members his very short lived NED status (No Evidence of Disease). 2009 he was neutropenic,  (extremely low & fragile immune system) but thankfully home for a few days, we celebrated with only our immediate family, just my husband, myself, my sister,  and our 4 other kids.  I made every single thing he wanted.  He ate and drank to his hearts content…..then we shopped online for EVERYTHING he wanted…………. 2010, Home, happy & off/on pain………………..none of us knew this would be his final Thanksgiving. How could we have known? How could we have understood that? How could we have possibly accepted that?  

2011……………..no turkey, no celebrations, no thanking God for all the gifts he has given us……just anguish & tears, tears,  and more tears……….  2012???????

Not many can relate. Very few can understand. The death of a child by cancer is a life sentence to the parents of anguish and agony. 

A sentence which I wish upon no one……………..

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Our very last Thanksgiving together……….

I miss you Papo……..

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