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Thankful….. November 22, 2018

Posted by Waking Up With A Broken Heart in Uncategorized.
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My entire life now & forever more revolves around my precious baby Sal. Although my life is tragic and difficult, my list of everyone and everything I am thankful for on this journey continues to grow, but some are so very strong and will never be forgotten.
I am thankful for my sister Maggie who flew home the day I called her to stay with my 4 other children as Steven & I flew to Sloan Kettering in NYC to start our new life trying to save our baby’s life.
I am thankful for Maggie’s husband Jeff, who had just married her months before, for his understanding and compassion.
I am thankful for my sister in law Ellen who took over for Maggie 9 months later so she could join us in our fight across the country. Bocky took care of my children like they were her own.
I am thankful for my sister in law Sara who stayed with me and Sal whenever possible in NY, which for me was, at the time, a terrifying new land. For giving Sal a refuge in Connecticut when he had a few days off treatment and for making sure we always had delicious food to eat.
I am more than thankful for Paula, an amazing, loving, kindhearted friend whom I really did not know at the time. Paula gave Sal & I a home, “his apartment” for 3 & ½ years on the upper east side of NYC. Our home away from home and Sal’s very favorite place to be besides home in Miami.
I am thankful for my friend Candace who at any time of night was there for me, to make me laugh, to talk, to cry with me, to give me & Sal our very first pair of Uggs to walk the 20 blocks to and from the hospital in 17 degree weather.
I am thankful for Vanessa, my very first nanny who took amazing care of my children when I was away from home for months at a time. My kids loved her so much.
I am thankful for Lori, my sister in law by marriage, who loved my baby so much, who constantly visited us in the hospital and who kept Sal so very happy.
I am thankful for Uncle Jason who made me laugh when I didn’t think I could. Who talked Sal into letting me go take a shower after almost 2 weeks! Who faithfully brought us dinner every Thursday night and who entertained Sal with his tales of Cosmo the Cockroach.
I am thankful for the family who donated their private jet to fly Sal & I home for 2 days on December 31st 2007, after being away from home for 3 months straight.
I am thankful for the woman who overheard me crying hysterically on the phone to my husband while at Cherry’s Pharmacy on a very rainy day @ 5:00. Sal had just been released from the hospital, we walked to the pharmacy to pick up his prescription and it started pouring rain. Anyone who knows NYC knows there are no cabs or car services available at this time. Sal was crying that he wanted to go home. This lady walked up to me and said “I will take you home” Not only did she drive us home, she went back to the pharmacy, picked up Sal’s prescription and brought it back to our apartment. Bless this woman I do not know and never saw again.
I am thankful for Sal’s caring, thoughtful and patient nurses. One time Sal wouldn’t lay still for his special MRI, he asked for Casey & she came down and talked him through the entire hour promising to stay with him and walk with him to the toy store, which she so sweetly did. The shark watch they bought that night is still on his favorite Yeti bear that I sleep with every night.
I am thankful for the cab drivers who grew to love Sal. The driver who kept pulling over so I could open the door and throw up because I was so violently ill but had to get to the hospital so Sal could get his treatment. The driver who kissed Sal’s soft bald head as I cringed (I was/am a severe germaphobe) and prayed my baby would be well.
I am thankful for my friend Shari, for her son, Sal’s bestfriend, Chase, who came to visit us in different states whenever they could. To Chase for treating Sal so sweetly and for being his bestfriend for so many years. They planned to build a tunnel between our houses.
I am thankful for Grace who lent us a computer to use so we could iChat with our family at home all the time.
I am thankful for my children, Sal’s brothers & sister, ages 6, 8, 10 & 15 at the time; for somehow understanding why mommy & Sal had to be away from them for so long and so often.
I am thankful for my husband’s constant research which helped keep our baby alive longer than anyone believed could happen.
I am thankful for Gina, our researcher who worked so feverently to try to find a treatment to save our baby.
I am thankful for the Ronald McDonald House in Minnesota & Philadelpha; for their warm and caring volunteers, employees & social workers. Sal loved staying there.
I am thankful for the Marriott across from Texas Children’s Hospital who were so nice to my baby. Who had his “very favorite bed ever” & “the world’s best room service”.
I am thankful for Guillermo Sal’s very favorite oncologist, for loving my baby, for helping him through this journey, for accommodating his wishes whenever possible, for thinking “outside the box” for being my friend and saving my own life.
I am thankful for my sweet daughter Samantha who traveled with Sal & I whenever possible, who at such a young age understood her brother’s pain and difficulties. For pretending to get IV’s in the infusion room so Sal wouldn’t be so upset, who went down to Starbucks to get me coffee when I asked, who was a friend to all the kids in the playroom, who when home was the 2nd mom to her brothers, who understood that mommy had to be away so much to try to save our baby’s life.
I am thankful for my dozens of friends who were always willing to help and do whatever needed for me and our family.
I am thankful for Corporate Angels who helped us with so many flights to & from so many different states.
I am thankful to JetBlue & Southwest Airlines for treating my baby like a VIP on every single flight. And especially to the Jetblue pilot who let Sal sit in the cockpit and taught him how to fly a plane.
I am thankful for the Red Cap worker at Amtrak in Penn Station who always helped Sal & I get on the train to Philly and made sure we were comfortable before leaving us.
I am thankful to Ana, Sal’s phlebotomist at MCH who listened to Sal and drew his blood wherever he asked her to, even though it was very difficult at times.
I am thankful for the car service driver who stayed with Sal & I when we arrived in Minnesota for the first time and no one answered the door at the Ronald McDonald for over 30 minutes.
I am thankful for Pete who drove Sal in his police car looking for a “bad guy” and made Sal feel important & special.
I am thankful for my daddy who drove Sal & I to and from the airport whenever we needed him, for taking Sal toy shopping when he felt good and for bringing his puppy Johnny to play with Sal when we were home and his counts were high.
I am thankful for the Drs & nurses at CHOP that saved Sal’s life in July 2010 when he coded.
I am thankful for Ste, Sal’s forever girlfriend, for never leaving my baby’s side, for loving him and making him feel so very special. I love you.
I am thankful for Leo for being Sal’s friend, for constantly staying with us in Sal’s final days, for loving my baby and continuing to be a part of our lives.
I am thankful for the over 700 people from all over the world that came to say goodbye to Sal at his Memorial Service at Sheridan Hills Baptist Church. I am thankful for the Pastor’s that helped us during his Memorial service and allowed us to play music that Sal loved although most of it was not appropriate for church.
I am beyond thankful for my friend Enyd for being in my life, for sharing her beautiful daughter Erica with me that was Heaven sent by her son Derek to help us get through life without our babies.
I am thankful for the love and support of my family, my friends, and my amazing community.
I am thankful for my friends Enyd, Shari, Esther, Esther, Fran, Candace, Tania & Sandy and all the others who make me laugh even when I think I never will again.
I am thankful for everyone in my life.
I am thankful for the 7 Thanksgivings I had with my baby although I wish I had more.
I am thankful for all the very loud and poignant signs my baby sends me to let me know he is with me.
And this year I am beyond thankful for Victor Dante, who helped me make a dream come true, to bring happiness and joy to kids like Sal.
I AM THANKFUL FOR BEING CHOSEN AS SAL’S MOMMY.

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September, It’s not the same to you as it is to me…….. September 18, 2018

Posted by Waking Up With A Broken Heart in Uncategorized.
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We are just over halfway thru September.  For some that means we are closer to Halloween and they need to decide on their costumes. Thanksgiving is coming, that means it’s almost Black Friday, let’s start making a list.  For others, it’s the realization that Christmas is just around the corner, start the planning, gift list, parties, decorations?….. And who shall we invite for Christmas Dinner….

For others, like me, it’s halfway near the end of the month that recognizes and reminds us (like we need reminding)  that Childhood Cancer is REAL, that it is NOT going away, and that it’s the reason my/our heart is eternally broken and bleeding……….

This has been a VERY EPIC year and month so far for the Childhood Cancer World and myself…..

  • After MANY years of advocacy and pleading the STAR Act Unanimously passed the House and the Senate and has been signed into law by the President. This is the bill so many of us have been working to pass for years now, traveling to Washington DC multiple times a year, meeting with our Senators & Congressmen to explain the desperate need for the Most Comprehensive Childhood Cancer bill ever introduced (& signed into law!!!). We are beyond thankful for the unanimous support we received to pass this bill. The STAR Act stands for Survivorship, Treatment, Access, & Research. This legislation authorizes $30 MILLION annually from 2019 to 2023 for desperately needed programs and research related to childhood cancer.
  • ****At our Childhood Cancer Caucus this past Friday, Rep Michael McCaul informed us that the Star Act would be fully funded this coming year.****
  • The Right to Try Act passed and was signed into law giving children with NO options Hope for survival by giving them access to experimental drugs that show promise, but are not yet FDA approved. When there are no more options available for your child and you know that there is even the slightest chance that a drug could help your child, you have no idea how important this is. I know, I have been there……..
  • The RACE for Children Act (The Research to Accelerate Cures and Equity for Children Act) unanimously passed and the President has signed it into law.  The Race for Children Act will bring new drugs to kids with cancer by authorizing the FDA to require that novel drugs developed for adult cancers also be developed for children when the molecular targets of the drugs are relevant to childhood cancers. This is a huge milestone for the Childhood Cancer World.
  • The Creating Hope Act The Creating Hope Act expands the FDA’s priority review voucher (PRV) program, allowing pharmaceutical companies to expedite FDA review of more profitable drugs in return for developing treatments for rare pediatric diseases including Childhood Cancers.
  • Last year the Food and Drug Administration approved the first treatment that genetically alters a patient’s own cells to fight cancer, This treatment is for patients with a type of Acute Lymphoblastic Leukemia (ALL), which is the most common form of Childhood Cancer. Scientists genetically modify a patient’s own immune cells in the lab, then infuse these new cells back into the patient’s body. These modified cells – called CAR T cells or chimeric antigen receptor T cells – then prompt the child’s own immune system to attack and kill the leukemia cells. This is a huge milestone that will transform future treatments for our kids. A treatment that holds great promise for all Childhood Cancers. (Mystic Force Foundation funded $125,000 for research into Cart T Cell for Neuroblastoma (the most common solid tumor in young children) with the Promise and Hope of a future filled with less toxic, more effective treatments for our kids.)
  • Our own Foundation, with the support and generosity of the Dante Law Firm & individuals and companies in our communities and across the country has opened a Childhood Cancer Haven named The Heroes Hangout, the first of its kind in the country. A place where our Heroes can come hang out, play video games, do crafts, ‘shop’ for toys (at no cost!!), and just have fun like all kids should. We will hold special events on the weekends and Holidays.  The Heroes Hangout will not only be for our sweetest children but for the parents as well. To see your child happy, to bring them joy and laughter while they are going through such a traumatic and painful experience is a feeling that is indescribable unless you have lived through it. The financial burden of a parent with a child battling cancer is most often times overwhelming to the point where many lose their jobs, their insurance and many times must file for bankruptcy. Although there is no greater joy to these parents than to see their child with a smile on their face, the simple task of buying a toy is often a luxury that many cannot afford. (My own baby’s bills were close to $5 MILLION!) The Heroes Hangout will help parents in this sense as they will have a place to bring their child that will allow them to enjoy the happiness on their children’s faces in a stress-free environment away from the angst of the hospital and the potentially deadly germs of the outside world, at no cost to them whatsoever. Check out our news story here https://wsvn.com/news/local/heroes-hangout-opens-in-north-miami-beach-as-new-haven-for-children-battling-cancer/
  • We are Thankful for Superintendent Alberto Carvalho for joining us for the Grand Opening and Ribbon cutting ceremony for our Heroes Hangout as well as his continued support of our littlest Heroes through the Miami-Dade County Public Schools.  Students and teachers throughout Miami-Dade County this month will be making cards and posters of support for our Heroes as well as holding toy drives, blanket drives and many other amazing events. We Thank you for the Proclamation to the Mystic Force Foundation as well as all the toys for the Heroes Hangout.
  • We were honored to have our sweet Retinoblastoma Childhood Cancer Warrior ‘JJ’ as our guest DJ at the Heroes Hangout and Police Car Initiative event. Although JJ lost both eyes to this evil disease, his spirit is not shattered and he is the sweetest & happiest child, with a passion for music and a dedication to being the Greatest DJ EVER!!
  • Our Childhood Cancer Police Car Initiative has brought together Police Departments from across Miami-Dade County in a United effort NEVER seen before in support of our littlest Heroes batting this devastating disease.  To see these police cars wrapped and decorated with Gold Ribbons and phrases of support for our Heroes is truly a remarkable and heart warming sight. Appreciation for this can never be put into words. We are truly #TheForceBehindTheCure.
  • Our annual Mayoral Proclamation Initiative is in full force and as every year, we look forward to receiving Childhood cancer Awareness Proclamations from all 34 municipalities in Miami-Dade County.  We are thankful to the cities of North Miami Beach, Aventura, North Bay Village and Surfside which have already recognized this very important month.
  • We have received Governor Rick Scott’s Proclamation proclaiming September as Childhood Cancer Awareness Month in the State of Florida.  We appreciate the Governor’s continued support of our littlest Heroes. The signed Proclamation will be hung in our Heroes Hangout.
  • We will hold GOLD parties this month at our Heroes Hangout, at Nicklaus Children’s Hospital and Joe DiMaggio Children’s Hospital as well. #ChildrenAreMorePreciousThanGold 

A week in our Nation’s Capitol – Our 6th Annual Curefest

  • On September 13th we held our Golden Toast at The Library of Congress, our annual Celebration to Honor and Thank our Congressional Leaders who are the Champions and the voice for our children on Capitol Hill.  We joined together to thank them and to Celebrate our Victories of the past year.
  • September 14th we attended the 9th Annual Congressional Childhood Cancer Summit in our Nation’s Capitol. We heard from Representative Michael McCaul, the Founder and Co-Chairman of the Congressional Childhood Cancer Caucus,  NCI Director Dr. Ned Sharpless spoke about pediatric cancer research, the need for basic science, the Cancer Moonshot, and Big Data.  We also heard from Co-Chair Mike Kelly and our own Gavin Lindberg, who’s son was in treatment with my own baby.
  • At the Childhood Cancer Summit, NCI Director, Ned Sharpless, said that he ‘thinks’ we are past the 4% of NCI funding for Childhood Cancer Research, and that ‘maybe’ we are closer to 7%. I say show me the NUMBERS.  Tell me EXACTLY what the amounts are.  No ‘thinking’, no ‘guessing’, we want TRUE FACTS. Don’t just say what you think we want to hear because we are all pressing you for more.
  • September 15th – The 2018 Curefest Rally to the Capitol was filled with hundreds of us gathering at Freedom Plaza in a meet & greet of Foundations, of supporters and of families and friends battling Childhood Cancer from all over the country, coming together in a unified effort to support and make change for the Childhood Cancer World.We joined together and walked to the Capitol, carrying pictures, banners, signs and chanting our words in support of change. One of the most emotional chants ‘Please don’t look the other way—–you may be walking with us one day’ You never know if it will happen to you or someone close to you.
  • September 15th Candlelight Vigil  Once again we gathered at Freedom Plaza. To see these Heroes on the stage telling their stories, asking for change, thanking everyone for their support and many dancing (many who have lost limbs to this torturous disease) is truly an unforgettable experience. Again, we were honored to have Rep. Michael McCaul by our side and have him receive the ‘Golden Gloves’ Award for being our Champion, his eternal support, his kindness and his dedication to our fight. We walked to the Whitehouse together, united as one, in honor and remembrance of our children.  One by one, on the Whitehouse lawn, we said our Angel child’s name and the thousand friends around us repeated each name, a reminder that they will NEVER be forgotten. The breathtakingly beautiful, yet painful singing of Amazing Grace, while holding our candles up to the darkened sky as if to reach our Angels, is, by far, the most difficult moment for me personally.
  • September 16th Curefest Festival on National Mall – As Sponsors of this incredible event again this year and our 6th year participating, we are reminded of the impact that people can have when they join forces.  Close to 100 Foundations from all over the country brought together in our Nation’s Capitol for the largest display of support and solidarity for our littlest Heroes.  Children battling cancer and their families there as well. Please see our pics on Facebook https://www.facebook.com/BeTheForceBehindTheCure/
  • We are Thankful to our friends Dena Sherwood and Mike Gillette from Arms Wide Open Foundation and Emmy award winning The Truth 365 for their drive, their vision and their unparalleled commitment to the Childhood Cancer World as the founders of Curefest and so much more. To Nancy Goodman from Kids v Cancer for writing these bills and changing the the landscape of Childhood Cancer through her policy writing. To Danielle Leach of St Baldricks Foundation for tirelessly walking the halls of Capitol Hill for change. And to the hundreds of other Foundations and advocates that come together to make change for our kids.  It is only through our #UnitedEfforts and being #OneVoice for our Heroes that change is happening.  I and our entire Mystic Force Foundation team are beyond honored and humbled to be a part of this change and this continued HOPE. 

So yes, September is halfway through, BUT, I am not halfway through my efforts of raising awareness, bringing Hope and fighting for kids like my precious Sal.

I am beyond Thankful for the years of support of my City of North Miami Beach and the North Miami Beach Police Department. The support received by this amazing city is like no other and I look forward to our continued collaboration for children battling cancer in South Florida and through out the world.

My baby died due to the #1 disease killer of children in our country.

Did you know that Childhood Cancer kills more kids per year than more than Asthma, Cystic Fibrosis, Diabetes and Pediatric HIV/AIDS combined.

Did you know that 1 in every 285 children will be diagnosed with cancer before the age of 20? Did you know that 16,000 kids a year are diagnosed with cancer in our country and that over 3,000 children die each year from cancer?     NO, I’m sure you did not know those facts or at least not before we met.  Why would you know? Why would you want to know that? But I/We need you to know. We need you to let others know. It is the ONLY way that we will continue to make change for our children that so desperately need change.  For the ones battling now, in memory of those that this disease tragically took from us and for the ones that will be diagnosed in the future.

Please join me the remainder of this month, and beyond to help make change, to continue our momentum and to remind our Heroes and families that there is HOPE. There is ALWAYS Hope.

 

I will Forever WAKE UP WITH A BROKEN HEART, but I will also FOREVER fight for what my precious baby died from…………

 

Valentine February 14, 2018

Posted by Waking Up With A Broken Heart in Uncategorized.
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Although I have many blessings in my life, the surreal & unfathomable tragedy of losing my baby, overshadows all joy and happiness in my life. I can literally feel the blood trickling out of my broken heart as I struggle to breathe at times. Especially on days like today. 💔

My children are my life and I have always told them ‘You will NEVER fully know True Love until you have a child of your own’.  One of my True Loves is gone and that is beyond my mortal comprehension in any way. Acceptance is by far not my reality.  There will never be a day when I can accept his fate, nor mine. There will never be a day when I will understand this inconceivable existence that is now my life. The faith I once relied on, now buried within the memories of the torture & pain that was my precious baby’s  daily reality. 

Only Hope remains……… Hope for an ever-after, eternally united with the bravest soul I will ever know.


Bleeding Heart

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

Posted by Waking Up With A Broken Heart in Uncategorized.
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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…………

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

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