Tag Archive for: charlotte pediatric cancer foundation

Why I Stopped

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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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Why I Ask

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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

Why I run…

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Written by Erin Santos, President of The Isabella Santos Foundation

Why I run…
Last month my marathon coach asked me why I’m running with the ISF Dream Team. I wanted to answer something easy like, “to stay in shape”, or “for the company during a run” or “all my friends are running”. But of course, my answers are never that simple.

Here is why I run…

I run to make her feel real.

It’s been 3 years. After a certain amount of time, it starts to feel like a dream. Some movie that you watched once but you were in it somehow. You had to of been in it because you are somehow in the pictures. I kick myself for taking the pictures and not being in more of them with her. Every once in awhile I catch a picture that someone took of me with her and I can barely breathe because I know THAT moment was real. The one that Angelo took of me with her in my kitchen. Those are real. That is a moment. She was dying and I knew it… but I still was just her Mommy in these pictures. But now, seeing her clothing in the house just feels like costumes from that movie. Even the pink dress I work to her funeral, I’ve tried to wear it on different occasions to get use out of it, but it is now just a costume too that can’t be worn in every day life. I don’t even dream of her. I wake pissed every morning when I have stupid dream about people I work with or some unknown face. Why can’t I see her even when I sleep? Is that too much to ask? I open my eyes each morning and look down the hallway, expecting to see her walking towards me holding her 10 blankies in her silkie pony pajamas. But, that too is just a scene from a movie in my mind. I live my life sometimes, forgetting what all happened in this house. Maybe I have to so that i can continue living because it’s a nightmare. But then I get upset with myself for wanting to forget. Some days I just want to feel her against me. But I know that is a dream that will never come true, so instead I search for ways to feel her again.. and this is why I run.

Things that make her feel real for me:
1. Visiting her site. Nothing brings it right in my face like putting my hand on that name plate.
2. Race day. When you see me, know that I’m probably drinking/drunk. I’m trying so hard to hold my composure knowing how she would of just loved being part of this day.
3. Running with the DreamTeam. Watching people get up at 6 in the morning and put on a shirt with your daughter’s name on it. Some of you knew her and some of you didn’t… and she is impacting your life. I know it sounds corny but I feel her running along side us every time we run. Laughing and singing and giving hugs to us all when we finish.

She won’t visit me in my dreams, so her gift to me is giving you all to me in another form of a dream. The Dream Team.

My goal is to raise $25,000 this year. If I hit that goal, I’m going to run back to back half marathons in November. 26.2 miles in 7 days. Help me hit my goal and give to the link below.

http://www.firstgiving.com/fundraiser/isabellasantos/8th-annual-5k10k-for-kids-cancer

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We Should All Want to be Like Her

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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]