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Why I Hide Her

Written by Erin Santos, Isabella’s Mommy & President of The Isabella Santos Foundation

Day 3 Why SeriesWhy I hide her…

I’m proud to say I’m Isabella’s Mommy. I love meeting people who know about the Foundation or have heard of her without having to launch into the full story. We have accomplished so much over the last couple of years and I should be shouting it from the rooftops. But sometimes I don’t…

How many kids do you have? This is my least favorite question in the world. Imagine having to assess each person that asks you this to determine if you should be honest or lie. Is this just casual small talk or are they really trying to get to know me? If I lie and then they find out, that is even a more awkward situation. If I tell them the truth then I instantly get the pity look. (I dread this look.) Even those times when I lie because we are having basic chit chat, I usually end up going back later in the conversation and saying, “Actually, I had a daughter who died too but I didn’t want to bring that up but now I feel like crap about not bringing it up.” Insert even bigger pity look. And I also look like an idiot.

Nights on the town with girls are always the worst times to have her with me. The night is usually prefaced by the friendly suggestion of not telling strangers who ask what I do, what I really do. I’m asked to elaborate more on the technology consulting I do on the side or maybe just say I’m a blogger. I get it now because in the early days, I would mention that I work for the Foundation and sure enough someone would pull up a stool and talk to me all night about their Father who is currently being treated for prostate cancer. I get the look of, “I told you so” from my friends and sure enough I’m stuck in a conversation all night with a stranger about PET scans and blood work and side effects from chemo. This usually doesn’t make for the best of nights for any of us.

I also never know what kind of emotional state I’m in. The minute I mention Isabella, the follow up question is, “Oh my gosh… how did she die?” Which then leads me down a story that I really don’t want to tell while I’m checking out at Harris Teeter. I find myself answering, “She died from cancer. But it’s okay, we started a cancer foundation in her name and we raise a lot of money for research.” Did I just say, “IT’S OKAY”? Why do I do that? It’s not okay but I can’t stop my mouth from saying it each and every time. Listen lady, can I just pay for my milk?

My favorite ones are when Sophia brings her out of the box and unloads on an unsuspecting stranger who is serving us at a restaurant. All this lady wants to know is what we want to drink and Sophia kicks it off with, “My sister died”. Shoot. Me. Now. We usually have to follow up with that look that says, ignore her – she’s crazy… and I’ll have a tall glass of wine.

As much as I know that it’s okay to hide her, I feel bad every time I do it. Some days I want to not have her shadow behind me. I just want to be a normal person that doesn’t have this huge secret tragedy. Her story changes people’s perspective of me and makes me feel like I can’t be the witty, sailor mouthed, and unprofessional person that I really am. Instead, I have to be Isabella’s Mommy… and that can be a hard torch to carry.

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Post 6

Why I Stopped

Written by Erin Santos, Isabella’s Mommy & President of The Isabella Santos Foundation
Day 2 QuoteDay 2…Why I stopped
When we finally placed her ashes up at Calvary, I found myself there every Wednesday. I would drop off Sophia and take 30 minutes to sit out there with her. The visit was filled with mostly crying and lots of anger. It became something that I scheduled things around because I wasn’t used to being away from her for these long periods of time. I still needed to be with her.

As time passed and the weather changed, I found myself missing a Wednesday or two. Guilt would plague me all day until I would find myself pulling up to her spot, even if it was inconvenient, because nothing in my life should have been more important than her. I became a cemetery grounds keeper as I took it upon myself to keep everyone’s site around her on the up and up. Watering flowers, adjusting sentimental pieces that had fallen in the rain and even chatting briefly to the people that surrounded her. I remember thinking how sad it was that I never saw anyone visiting them at the cemetery. All these people out here and I was the only caretaker. Here I was, a 35-year-old cemetery grounds keeper. Felt like an odd way to deal with a death.

Time began to pass and the summer came. I was no longer dropping Sophia at Calvary so I let myself take a break from her. I would stop out occasionally but when I did, the visit turned into something else. My visits became more about self-reflection, guilt, anger and resentment. I was no longer enjoying the visits. I would sit with my back to her and I would rest my head back on her nameplate. My mind would spin of all the things I had done since I last visited her that she would not be proud of.
Why do I live my life this way? I’m a better person than this. Do I drink too much? Am I giving enough attention to Grant and Sophia? Am I good friend? Should I be calling my Mom more?

My regular visits didn’t hold these questions when I was there with her because I was there so often. Not much had happened since I was there last so it wasn’t about catching her up with my life. It was just about being together again.
But time between visits brought up a range of emotions for me.
When you have a belief that when people die they are still, in a way, around you – for some it can be comforting. But for me, it was scaring the shit out of me. Is she watching me lay in bed all day? Is she watching me yell at the kids? Is she seeing Stuart and I fighting and saying horrible things to each other? It really messes with your head to think that your 7-year-old daughter could potentially be watching you make all these mistakes in your life. I found myself sitting with her and apologizing for all the things I had done wrong since last time I saw her.

I would leave feeling like crap about myself so I had to stop visiting her.

It has even changed my thoughts on what happens after we die. I’m now choosing to not believe that our loved ones are still with us, guiding and steering us in our lives. They are just gone. She is not watching my every move and constantly being disappointed in the choices I’m making. I have to think this or I can’t live my life. I can’t apologize to her every day. I can’t sit out with her and explain myself.
I also know that I have to let go of her and by not going out there – it allows me to do that. I need to be present in my life and know that I’m doing the best I can. I can’t continue to tend to her or think that she needs me to come out there because it means something to her. She is gone. She is not keeping score and I need to remind myself of that every day.

A fear of mine is my children saying that I never got over her death. If I go out there and sit, it just reminds me of all the horrible things about her life and I can’t move on. I’m swept up in the lives of the dead people around her as I tend to them as well. It’s a sick way to spend your day when you have so much in your life that is good.
I still go occasionally. But it’s brief and sometimes cold. It has moved toward bringing her new flowers or some silly lawn ornament that I stick in the ground. I still put my hand on her name when I’m there so that she knows it’s me – but as soon as I feel the punch in the gut, I remove it quickly. It’s like a bolt of lightning that runs straight to my heart. I feel like my relationship with her is dwindling away, but maybe that is the right thing to do. I need to take a step back from the pain of her and the guilt that it brings to my life.
But it also makes me feels like I’m losing her all over again.

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 ib plaque 2

Why I Ask

Written by Erin Santos, Isabella’s Mommy & President of The Isabella Santos Foundation

ISF Backdrop Quote Sept

Why I ask.

A couple of weeks ago, I was enjoying a casual dinner with friends. We were eating our weight in chips and salsa and conversation turned to ISF, as it usually does. We started a conversation about a new concept I was trying out on Facebook to help raise money. It’s a simple idea based off our #isftagteam concept.  Each day I ask 5 people to support children’s cancer research by tagging them on Facebook.  It’s just a simple tag, asking you to take a minute and give to the cause of children who DIE from cancer. I don’t make you pour buckets of ice on yourself, you don’t have to do some silly dance or even do a single push-up – and you don’t have to tag others to do the same. You just have to support children’s cancer research.  Make a donation of $5 or make a donation of $500.  I don’t care what you donate – just support it.

I got pushback from my dinner companions for this concept immediately.  “People don’t want to be called out publicly”, “You can get away with doing something like that, but I would never do it.” I kept explaining that I didn’t really think it was offensive.   If someone directly asked me to give to something they really believed in, I would give. But, the looks on their faces told me that it was too “in your face”. Even though the conversation changed topics, I kept bringing it back to the simple question of whether or not I’m offending people by asking them publicly to support something that means everything to me. I couldn’t swing their opinion.

So I stopped doing it.  My goal wasn’t to upset anyone or push them to give when they didn’t want to. That was 2 weeks ago.

I hated that I stopped.

The more I thought about it, the more I realized something. I don’t give a F*ck if it makes people uncomfortable.

There, I said it.

Do you know why it killed her?  Because people are too nervous to ask someone to donate.

Not anymore.  So I’m sticking to my guns here.  Guess what, if I ask you – you don’t have to give and it won’t make me hate you.  But if you do give, it will make me love you.  It will make me love you because you get it.  You understand that nothing will be done unless something is done.  Someone once told me, “You know… I would give to ISF more if someone just asked me to do it.  But lots of times no one asks, so I forget and I don’t donate.”  I about choked when I heard that from someone recently.

So I’m making it my mission to just ask.  No harm in asking.  Things can only change if people take action and MAKE them change.  My goal isn’t to put you on the spot.  But sometimes you do things when you are on the spot.  And I’m hoping that what you do when you are on the spot will bring change and save lives.

Let’s do this.  Prepare to be tagged.

#ISFtagteam

Erin Santos, President of the Isabella Santos Foundation and Isabella’s Mommy

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Isabella Race Picture

We Should All Want to be Like Her

Written by Erin Santos, President of The Isabella Santos Foundation

Ib_Magnolia BakeryI saw this picture of Isabella in our new video and it stopped me in my tracks.  One of my many awesome abilities is my long and deep memory.  In the memories of Isabella, it is a a blessing and a curse.  Many of you will look at this picture and think of how happy she was.  And you would be right.  She was happy here.  She was one of the happiest children you ever met.  What you don’t see in this picture is the struggle.  This was Monday, September 19, 2011.  We were in New York City for dreaded quarterly scans.  We tried to make our time in NYC exciting for her and this day was no different.  We were given a private tour of Magnolia Bakery and private cupcake decorating party.  She brought her American Girl doll with her who also liked to decorate cupcakes.  She and her doll, Lanie proceeded to decorate cupcakes with hot pink icing and every color of sprinkle in the rainbow.

Behind the scenes she had every symptom imaginable.  Headaches, vomiting, stomach pains, dizziness and blurred vision to name a few.  I was anxiety ridden because I knew something was wrong.  I took a call during this cupcake session from a nurse who told me she was scheduling a neuro consult for Isabella the next day.  I felt sick.  I found out the next day that the cancer had spread to her brain, her bones, her bone marrow, areas in her chest and abdomen.  She was dripping in cancer.  The disease in her brain was bleeding and we should be expecting seizures any day.  We should go home, be with our family and call our home health care nurse.  This was it.  Just yesterday she was decorating cupcakes with a smile on her face.

Look at her face.  Then look at it again and tell me if you see cancer in that picture.

That’s the thing about Isabella.  She chose to dance in the rain instead of waiting for the storm to pass.  She lived every day like she was happy to be alive.  As a matter of fact, 4 days after this picture was taken – we held the 4th annual 5k for Kids Cancer and she danced and partied until the sun went down.  She lived 282 strong days after that death sentence we received.  

The longer she has been gone, the more I have gotten to know her.  I watch Sophia become obsessed with her in her daily life.  It gets scary at times to watch her be so consumed with everything in our house that is Isabella’s.  She wears HER clothes, she watches HER High School Musical Movie on HER iTouch, and listens to HER Taylor Swift CDs as she falls asleep in her bed, on HER Pillow Pets, with HER blankies.  I have to go to Isabella’s room each morning, open her door, and hear that same creak in the door that I heard for years when waking her for the hospital.  I have to go over to her bed and see a little girl in kitty pajamas, covered in pink little blankies and wake her.  But instead, this healthy little girl has hair… this time it’s Sophia.

For Sophia, Isabella has become the ultimate role model.  She sees pictures of her doing amazing things with this bright red hair and her big smile.  She sees her enjoying every minute of her life in pictures.  Sophia doesn’t know Isabella with cancer or being defeated.  People talk so positively about her with admiration.  The story of Isabella has been built up over the years so much that Sophia wants to be just like her.  I struggle with that because I want Sophia to be her own person, and then it hit me:

I want to be like her too. 

I want to leave a lasting footprint.  I want to inspire people.  I want to make a difference in the world.  I want to leave a lasting legacy and live a life that is fulfilling and rewarding.  I want to think that my time in this world was used towards a greater purpose and lives were saved because of actions I made.  I want people to see my picture and think I was truly happy and no matter what was going on in my life, I was going to fight through it and do something monumental with my day, my year, my life.

We should all want to be like her.

Her fight and her face inspire me every day and for this reason I choose to continue raising money to make a difference and do what she would be doing if she were alive today.  She would want to save her friends and make the world a better place.

They told her she was done and she wasn’t.  And I’m not done either. 

DO. SOMETHING.

Please give to this amazing cause and ask your friends to do the same:  http://www.firstgiving.com/fundraiser/isabellasantos/8th-annual-5k10k-for-kids-cancer

Register for the race: www.5kforkidscancer.com 

[youtube_video] sH3nELoFQHU [/youtube_video]

Fight Cancer. Run with us.

ISABELLE’S DREAM TEAM – 2015

By Tom Patania

On March 9th, we unveiled the details for Isabella’s Dream Team – 2015. This date was picked specifically because it would have been Isabella’s 10th birthday. Not only is she the Founder of ISF, she is the inspiration behind this team. Our focus is about Isabella, and following her dream of creating a world with “no more cancer.” We continue the fight for her and the many children that are also battling cancer.

Last year, in our inaugural year, the team was filled with passionate and selfless individuals that came together to surpass our wildest expectations. The 2014 team raised $34,000. This program continues to be a volunteer based, grassroots effort without the high overhead of a large charity.  We ask each participant to fundraise a minimum of $500 (but our hope is that each will shoot for much more than that).  What we lack in advertising dollars we make up for with heart and community.

 “Though she be but little, she is fierce.” – Shakespeare

IB in race tIn an effort to grow our team and our impact, we are recruiting runners and run/walkers that want to join our mission of helping make a little girl’s dream come true.

This year each athlete has a choice. We will be training for two races:  Rock N Roll Savannah (Nov 7th) or Thunder Road (Nov 14) half or full marathons.  With this being a volunteer effort, we ask that each participant sign up for their race of choice. Our hope is that the athletes that choose to run RnR Savannah will take part in supporting and cheering for those that are running Thunder Road, and to support our Charlotte community. The ISF10K/5K for Kids Cancer (Sept 26th) will be a part of our training program, so each team member will want to sign up for that race as well.

Official team training will start the week of July 13th and training schedules will be available for both distances. Included in the training schedule will be speed & hill workouts (Blakeney area) and Saturday long runs (various locations – early morning). I highly encourage all of you to attend as many team runs as possible.

TEAMWORK MAKES THE DREAM WORK

dream teamHow to join the team?

  • Email Coach Tom at tom@isabellasantosfoundation.com with which race and distance you’re interested in and your t-shirt size.
  • Create your First Giving fundraising page by selecting: Isabella’s Dream Team 2015
    • Be sure to make this page personal. We do not ask you to cover the difference if you cannot hit $500.  We only ask for your best effort.
  • Register for your race and distance: RnR Savannah or Thunder Road
  • Get Social: tag five friends to let your network know you’ll be running with us this summer.