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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

All I want……… December 13, 2017

Posted by Waking Up With A Broken Heart in Christmas, Infinite Pain, Love & Grief.
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All I want for Christmas…..and every other holiday and birthday…..is my baby back.

That’s it, nothing else.    Just him.    Just my Sal.    Just my precious baby.

So he can wrap his arms around me and tell me he loves me.  So I can kiss him good night. So I can hear him say “mama hug me”. So we can stay up late and watch silly movies. So we can have some more midnight snacks. So we can play video games and laugh at how terrible I am.  So we can have late night Target runs for a new toy or 2 or 3.  So we can have another war with his toys. So I can make him pińa coladas while he plays in the pool with his sister & brothers.  So we can go to the flea market and scour the entire place looking for blue toys.  So we can go see inappropriate movies and  I can cover his eyes and have him yell at me. So we can sing in the car.  So we can dance in the bedroom.  So we can jump on the bed.  So we can eat blue cotton candy and blue snow cones.  So we can drive around looking for new toy stores.  So we can argue over whether Ruby is Max’s mother or sister.   So we can go out for pizza. So we can watch Spongebob.  So he can dress up like the Blueranger. So he can be Captain America again. So we can have another birthday cake. So we can find another little toy to collect.  So we can go to Disney.  So we can ride the waverunners.  So we can play Club Penguin and feed his Puffles.   So I can cook him his favorite steak.  So I can read him 5 books before bed.  So he can stick his head out of the sunroof when we pick up Sergio from school.  So he can win at every game we play.  So he can ride his car around the house.  So we can visit Papi and play with Johnny.  So we can buy some more Red Bull.  So he can make me read more books about bugs just to see me cringe.  So we can watch Jaws again.  So I can kiss his sweet soft head.  So we can count the freckles on his nose again to see if there’s any new ones.  So we can go for a walk.  So we can shop for blue toys online.  So we can cook 15 different things for dinner. So we can go to the park.  So we can go to New York and visit all his favorite places.  So we can fall asleep on the couch.  So we can eat ice cream for breakfast.  So we can eat pizza for lunch and dinner. So he can tell me again how he was going to marry me when he grew up.  So we can fight over who loves who the most again.   So I can kiss his cute little nose.   So he can give me 4 inches of bed space again.  So I can make him another bubble bath.  So we can order room service.   So we can barbecue his favorite food.   So he can eat chocolate cigars.  So he can make me watch horror movies and not let me close my eyes.   So he can tell me how beautiful I am and I can tell him how handsome he is.   So I can hug him and never let go………………..

So we can decorate his little blue Christmas tree…….

So I can wake up on Christmas day, kiss him and see the excitement, happiness and joy in his eyes………..

THAT’S ALL I WANT………

Christmas FB

A Hurricane, PTSD, & SAL September 23, 2017

Posted by Waking Up With A Broken Heart in Infinite Pain, Love & Grief, Love & Pain, PTSD after Childhood Cancer.
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Hurricane Irma was devastating on so many levels.

Most of the state was evacuated. Some people evacuated 2 to 3 times running from the storm. Here in Miami,  I happen to live in an evacuation zone right on the water. We were told the storm surge could reach 10 to 20 feet. The decision to leave was a very difficult one for me. The thought of losing my baby’s things was something that I just couldn’t grasp.  You see, his belongings, his toys, his blankies, his clothes, everything he owned is in that house. It’s all I have left of him. I will never EVER have anything new that he loved, that he had touched.  The turmoil that I experienced was just incomprehensible.  I live in pain every day of my life, but what happened in the days leading up to Hurricane Irma, well, it’s so hard to describe. The gut wrenching feeling, the exasperation and anguish, the physical pain caused by mental exhaustion is difficult to describe.

We secured our house as much as possible.  I wrapped as much as I could in plastic and stacked what I was able to up high in case the house got flooded due to the storm surge. There was no way I could wrap everything, It would be impossible to raise everything up. This new house we moved to is only one story and we weren’t sure how it would hold up in a Category 5 hurricane.  The thought of the roof being ripped off of our house and my baby’s things being blown away, well it’s a feeling that only another mother who has lost a child could possibly understand.

Yes, material things are replaceable as they say, for most, but that is not true for me. Sal’s things are NOT replaceable. His favorite street sharks, his toys, his clothes such as his favorite jeans and blue shark shirts, all his dozens and dozens of blankies that he cherished. His Power Rangers, his Captain America toys, his favorite videos, all his different collectibles as well as all his handheld games. Those are not replaceable. The unseen fingerprints on everything he touched, the clothes he wore, his blankets that he always carried that made him feel cozy and warm. Those things could NEVER be replaced. They are the only things I will ever have.  I couldn’t  bring it all with me. I did the best I could.

As I apprehensively walked out the door with my loving family, tightly clutching my precious baby’s ashes (which is not normal and also another beyond devastatingly difficult thing to do) and leaving his cherished belongings behind, I asked him to please take care of his things because I couldn’t bear to lose any more of him. I realize no one truly understands. Even those especially close to me couldn’t and will probably never totally grasp the extent of my excruciating pain and anguish. The 48 hours I was away from home with the wind blowing and howling as if it were to rip apart the massive and strong building where we were staying, felt like weeks. All I wanted was to take my baby’s ashes securely home and check on his things. I knew my kids were safe with me and anything that happened to the house could be fixed. I knew the power  would be out but would eventually be restored. I knew trees could be replanted, fences could be repaired.  But my treasures could NEVER be replaced.

Finally, we were able to get home. I was born in Miami Beach and have lived thru many hurricanes, but driving thru the devastation and flooding in the neighborhoods this time truly was eerie.  No power anywhere, giant trees uprooted blocking city streets, power lines down, sunken boats, and debris everywhere. Finally, in what seemed like hours although it was only minutes, we arrived home.

It was as if there had been a dome covering my home. No damage, no flooding……..the angel wing pool float along with the others were still in the pool. With hurricane force winds lashing all around our Miami home for 48 hours there could only be one explanation. Sal stayed home to guard his things for me. It’s the only possible explanation. #ThankYouSal

LOVE & PAIN June 7, 2015

Posted by Waking Up With A Broken Heart in Love & Pain.
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LOVE & PAIN

IT IS ALL ENCOMPASSING. 

It is a feeling of euphoria, yet, can be a feeling of sheer anxiety & torture at the same time.

It’s a tightness in your chest, it’s a shortness of breath, it’s a physical pain in your heart, as if all the blood is being drained……drop by drop……….making your heart beat faster…….trying to keep up with your shallow rapid breathing………..you feel as if you will lose consciousness………..the world around you is spinning before your eyes……….there is a painful gnawing inside you…………          where are you       i miss you       you are my everything

The thought of tomorrow without you makes the pain somehow worse……how is that even possible?…….to be worse I mean…….how can it possibly be any worse.

Do you understand? Do you know how I feel? I hope you don’t……………….

DO YOU KNOW WHAT TRUE LOVE FEELS LIKE? THIS IS TRUE LOVE THAT CAN NEVER BE……..

i miss you

Daniella’s Wish February 27, 2015

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

DaniellaMe & Daniella10410333_806069862792152_4485237855564827007_n

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.

MFF-Sal-logo-HR

 

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.
1 comment so far

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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