Tag Archive for: Isabella Santos Foundation

Why I Regret It

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

Day 8 QuoteDay 8
Why I regret it…

How do you make a decision on remains? How do you make a decision on a child’s remains? Questions like these are horrible and they are ones I never thought I would be making at the age of 35. The truth is, there is no right decision. I think that I made the decision based off what I wanted for myself. I had to think that when I’m gone, I’m gone. Light me up, put me in some box (hopefully a decent looking one), and take me to a beautiful place. Let the wind carry my ashes and scatter me somewhere I love. I don’t want to be put in a box in the ground and decay with the bugs. I especially don’t want to be put in some marble kitchen counter top looking apartment home for ashes. Creep. Out.

But when it’s your child, you just can’t do that.

There is no discussion with them on what their wishes are. Their only wish is not to die. They can’t grasp the concept that someone is doing something with you when you die. To them, people are just gone. Grant and Sophia still don’t really know what is going on behind that name plate when we visit her. Lots of questions like, “How did she get in there?” or “Who are all these people with her?” “How can they all fit in there?” Sophia still tries to peer into the holes and walks around it like it’s some magician’s table that has a trap door somewhere. Eventually we are going to have a horrible discussion with them on what actually happened. I don’t think it’s going to be pretty. I can’t imagine they are going to be comfortable with what we decided, and it may truthfully scare the shit out of them – or even worse – they’ll hate us for it.

I’m not really sure if we had another good option. I just could NOT pick out a casket. So much of that seems worse. Maybe it was all those years of watching Six Feet Under on HBO that wigged me out about the whole death process. Or those horror movies about people being buried alive. People have nightmares about that, right? Although I have to say that watching someone get burned alive on Game of Thrones makes me want to sob like a baby. Why did I do that to her?

Sometimes I miss her so much that I think about taking her box from the Calvary cemetery and hiding it in my house; just so I know she is here with us. I wouldn’t tell my family, it would be my little secret. Jesus, I sound like a nutcase. I really only thought about this once last Christmas, and I eventually would have put her back…I think.

By cremating her, I have lost the chance to ever lay with her. But really, what am I going to do? Bring a blanket and pillow out there? Do I think I’m going to bring a picnic lunch and sit out there on top of where she is? This is the really sick shit that goes through my mind sometimes! At least I would know that she was under me though. For some reason that brings me comfort.

I felt like I knew the right thing to do, so that is what we did…and now I regret it. Somehow I feel like if we chose the other path, we would have regretted that too. Point of the story is there is probably no right way to handle a child’s death. Her entire journey was a series of split second decisions you have to make and then deal with the repercussions of it your entire life.

I wish I could have been making other decisions like what color to paint my kitchen, or if I should check out that new Meryl Streep movie or wait till it comes out on RedBox. Instead, I’m in my 30s and deciding on how to ultimately end a child’s existence. That is some F’d up shit right there.

-Isabella’s mommy

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Why I Loved Him…

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

Day 4 QuoteDay 4
Why I Loved Him…
I have loved people in my life for a number of reasons. But this love was different than anything I have ever experienced. This love was built out of trust, admiration and hope for saving my child. You would hope that love should flow both ways and for the first time in my life, it didn’t – and I didn’t care.

October 4, 2007, he came into the room and introduced himself. He was 5’9, brown hair and glasses. He wore khaki pants with a rope belt that secured his pants that didn’t fit properly. A green shirt and tie that looked like the type you bought together in a box. His hand extends, “Hi, I will be your daughter’s oncologist. I’m so sorry about the news you received today.” This is the standard greeting they learned to give us during this time of sorrow.

As her treatment started, we saw him regularly. Every time we would come in, he would be waiting on us. “Hi honey,” he would say to her as he placed her hand on her back. I always got a firm handshake and a smile, very serious business. Isabella slowly let down her guard with him and started to feel comforted by his presence.

The days tuned into weeks that turned into months. But through this journey, I was starting to think he had been in our lives forever. He always knew just what to do and when to do it. I trusted him and more importantly, she trusted him. This was the man that was going to save her.

Isabella began to see him as family. She would spend time drawing pictures for him or do craft projects that she would set aside to bring up to the clinic to leave on his desk. My favorite is the picture she drew of the three of us holding hands, some weird new family we had developed into. She began to feel a level of peace with him and she knew he wouldn’t hurt her, if anything… he would make her feel better. We were a team the three of us and I could tell she adored him.

I began to trust no one or no treatment plan unless he was behind it. New York would pass down instructions of what we were to do. None of it would start until I talked to him and had his blessing. “Do you think this is the right thing to do? What would you do if you were me? How do you think the cancer will react?” I was grasping for his approval and sign-off at every turn. I engulfed myself in learning every piece of her treatment plan and could rattle off blood count numbers or medicine doses without even thinking about it. I yearned for him to know that I was knowledgeable about what was happening because in my mind I told myself that it would somehow give us an edge.

I even changed my appearance in a way that showed that I was “put together”. I’m not one of those moms who sulked around in sweatpants with no make up on. I was in better than those moms. I had my shit together. When he would come on rounds, I found myself being nervous or posing when he was in the room to seem unnerved by him or what he was telling me. I wanted him to trust the decisions that I was making just as much as I trusted his. I wanted him to think that I was more than capable to act when it came to her care than these other moms.

After years of working side by side in her journey, I started to know his footsteps coming down the hall. She and I could feel his presence before he even arrived. And I began to know the look on his face or the tone in his voice that would tell me that we were safe or we were in trouble before the news even hit.

Even when the news was bad, is still wasn’t as bad because it was coming from him. I could take it because I knew that he had a plan and he was going to try to save her until the end. He wasn’t going to let her fall through the cracks after all these years of trying to save her together.

When we reached the point of making the hard decisions, I felt that he and I would come up with a plan on what was best for her. He and I were determining her fate. My husband who left the primary care up to me would often get second hand knowledge of the plan that he and I already determined. It would be positioned in a way that always made him feel that he was a part of the decision. But I know that our decision had been made earlier in the day between the two of us.
I always knew in the back of my head at some point that she was going to die. People would tell me that she is going to be the one to beat it. But, I knew that she wasn’t. It was just a matter of time and options, and our options were running out. I couldn’t imagine what the dying process was going to be like for her. I just knew that we would somehow all figure it out together. He would walk along side our family, holding her hand across this invisible line, making sure that it ended with him just as it began. But, as always in cancer – things never happen the way you want them to.

The call we got from him in June 2012 that revealed the cancer had spread to her bones was the last time I spoke with him before she died. Due to unforeseen family circumstances, he was not available to us the last month of her life. We received no call, no card in the mail. I couldn’t understand him not being a part of this process in the end. This was his child too and she had fallen through the cracks and was dying without him.

The next time I saw him was at her funeral. I saw him out of the corner of my eye shaking my husband’s hand. I wondered what typical doctor response he was giving him that he learned after all these years of losing children.
I waited for him to come over to me. I felt sweat start to form out of every pore on my body. What would he say to me? I wanted to hug him and sob over our failure and have him reassure that we tried everything we could possibly do together to save her.

Instead, he shook my hand. “I’m so sorry for your loss.”

And in that moment I realized. The love I had for this man was one-sided. She wasn’t his child that he was trying to save alongside me. She was his patient. I was her Mother. He is a doctor and this is the business he is in. His handshake was firm, but it told me everything I needed to know. I tell myself that it would be completely unprofessional for him to hug me and cry. All the years of mentoring in his position must of told him to compartmentalize these situations or you will go down in the flames of depression each time you lose a child. But, I swore that she wasn’t just a child to him, she was different.

I couldn’t see him for a couple of years without going into a full-blown anxiety attack. I could feel tears forming and my stomach would be sick when I saw him coming over. It was unfair of me to put him on that pedestal if he were the God that was going to save her. I always craved that conversation that I wanted in the end. But that conversation never came… and I finally began to see him for who he really was…just her doctor.

-Isabella’s mommy

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Why I Hide Her

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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

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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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August Firstgiving Promotion!

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Ready. Set. Go!

Ready. Set. Go!

August can feel like December with the ramp up of Back to School – the calendar books up in the blink of an eye and summer seems like a distant memory before it even ends.  Plus, we’ve been busier than ever getting ready for our September 21st 5k (Go to www.5kforkidscancer.com to register!) We can’t wait!!! Those are our excuses for posting our August FirstGiving Promotions almost halfway through August!

We’ve mentioned in previous posts just how important FirstGiving is to ISF. Last year we raised over $100,000 through pages YOU created. We’re officially halfway through 2013, and we’ve already raised $33,000 through FirstGiving – our goal is $100,000 (33% to goal!). We know we WILL get there thanks to the constant support from old AND new friends.  August and September are always our highest giving months so we are excited to see where we will end up!

To thank you for all of your efforts this month, we’ve set up some pretty fabulous prizes – we like to call it the ISF 5K Swag Bag (drumroll, please…):

If you raise at least $1000 on your Firstgiving page by August 31st, 2013, you will be entered to win:

  • A $100 Dicks gift card (did we mention it’s Back to School AND ISF 5k time?? How many tennis shoes are YOU buying this month!!);  Thank you to Dicks Sporting Good for donating this to us!
  • Two entries to the ISF 5k for Kids Cancer; and,
  • Five raffle tickets to use at the race.  You will NOT BELIEVE the items that are coming in for the raffle and silent auction so these could be your winning tickets!

Even if your name isn’t pulled from the hat, just by raising $1000 you will have access to our Firstgiving VIP tent that will be at the race.  This includes a delicious hot breakfast, piping hot coffee, time to socialize with new and old friend, AND bragging rights for the entire day.

For every $1000 you raise, your name goes in the bucket for these prizes again and again. That’s your incentive to go beyond your monthly goals – how many times will your name be entered??

Remember that raising money has never been easier. Use Facebook, Twitter, Instagram, Pinterest – whatever social media site you adore this month to get the word out. Tell all of your friends just how easy it is to set up a Firstgiving page for ISF. Let’s do this together – spread awareness and beat this Big Bad Thing for good.

Thank you from everyone here at ISF and as always, Happy Fundraising!!