Why We Haven’t Touched It

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

Day 10
Why we haven’t touched it…

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She barely lived in it. It’s been vacant for 3 years now. I remember her helping paint the walls pink and purple stripes. The rollers were so big she could barely hold them up. She got her new white furniture with a side table, dresser and desk for all that homework that she had planned to do. Truth is, I can barely remember her sleeping in there. So many times she would end up in our bed due to sickness or if Stuart was traveling, not to mention all the nights in the hospital. If she slept in there one hundred nights I would be surprised.
But the room is all her. Her pajamas are still in the drawers, her dresses still hang in the closet and her shoes are still waiting to be worn. Her dresser is covered with pictures of her best friends, her family and “get well soon” cards from classmates. The bookshelves have her library books that I’m sure the Elementary school as decided not to ask for. Her desk is filled with drawings and notes that were never finished. There are beaded necklaces that we made in the hospital, seashells she collected, diaries with kittens on them and Taylor Swift CDs in every drawer you open. I have still not gone through it all because I’m always afraid of what I will find. Last year I found a Mother’s Day craft she made me at school just a month before she died that she never gave to me. That is when I just decided to close things up for awhile.

There are books out there for everything these days when it deals with children. “What to expect when you are expecting” was supposed to be the roadmap for pregnancy to follow. Where is the book on “What to expect when you aren’t expecting?” Where is the manual for parents on how to deal with things like this? I need a roadmap and here are some things I need to know…

1. What do I do with her clothes and when do I start to actually do something with them? Do I make her clothes into blankets and give them to people? Is that creepy?
2. What do I keep and what is junk? Do I keep everything that she ever wrote on? If I throw it away will I regret I did that?
3. How long do I keep this room going like this? Am I supposed to have a little girl’s twin bed in there forever?
4. If I make her room something else, what do I do with it? If I make it into another guest bedroom will people be wigged out sleeping in there? Feels even more disrespectful to make it into an office or something.
5. What do I do with her furniture? Is that another thing I will get rid of and then regret I got rid of it? I keep finding places on her furniture that she actually wrote her name on. Seriously?
6. Do I put her stuff in storage?
7. When do I do all of this? At what point is it okay to have her room still the same, and at what point does it become creepy? When will people start saying, “I think it’s time they did something with that room.” I definitely want to do something with it before that conversation starts happening.

All these counselors will tell you that this stuff should be done whenever you are ready. There is no timeframe that should occur. But there has got to be. There is definitely a line out there in the universe that you cross too soon or too late. It still feels too soon to me because every season I think I can tackle clothing and I just crumble. But, I know it all can’t stay like that forever. It eventually will need to be tackled, just not sure on the rules for this stuff.

-Isabella’s mommy





Why I am Not a Nut Job

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

DAy 9Day 9
Why I’m not a nut job…

September comes around and I feel the urge to write. There is so much stuff out there written this month for Childhood Cancer Awareness month. Some of it applies to my situation, but some of it doesn’t. Some of it is weird. Hell, my writings are probably weird. But they are relevant to me because they are my life stories. However, they are not my every day life stories.

I get to log in and see all the great comments of Facebook when we push these blogs. Everyone is so positive and supportive on each of my posts. One common theme though seems to be worry about my mental state. I get it. I realize that I must sounds like a complete nut job in these posts. Truth is though; these posts represent about 5% of what is going on my brain. I just pull them out this month and talk about them openly with total strangers. Okay, maybe that is a little bit of nut job behavior.

Every day I am honestly just living my life. There are plenty of days that go by where I don’t think about the horrible movie I was in. I’m like most of you who think about work, or what the kids have going on today, or where I left those expensive pair of jeans I just bought, or which guy the Bachelorette is going to end up with. I’m able to walk by her room without thinking too much about either. Her room has been vacant now for 3 years, which is longer than she even lived in it. Sophia is growing out of the last remaining bit of her clothes, so unless I’m looking for something specific, her items are finally being filled away.

I’ve even seen her pictures so many times through the Foundation that they are beginning to seem like those pictures that come free in frames of people laughing and enjoying their lives. I have to remind myself that it is Isabella in that photo or better yet her and I in that photo, otherwise I tend to walk right past it. The only pictures that get me are the ones that catch me off guard that I have never seen or forget that I took. Those rattle me.

When you see me out and about, I look normal. I act normal. I seem normal. Actually, I’m starting to feel normal. I know the times of year when I can be a nut job and I tend to keep those days very hidden from the public. Her birthday is hard; the day she passed away seems even harder. Holidays are getting easier. I find that I even hide out less at the race; I’m actually out mingling with the masses. Where as years ago, I was hiding under the silent auction tables. ☺

I think my every day grief has presented itself in the form of little ticks I have. Loud noises, high anxiety and losing the need to have people or touch in my life. I’m a little closed off, I don’t like to meet new people and I’m incapable of small talk. I crave being alone and could days without talking to anyone. But honestly, I think those are just issues that I’m developing as I’m getting older. Not sure if those have much to do with grief. That’s just normal Erin nut job stuff.

So while it may seem that I’m about to jump off a cliff during these posts, just know that it’s a moment in time for me and I’m really just sitting here on Facebook, eating a turkey sandwich still in my pajamas like the rest of you.

-Isabella’s mommy




Why I Regret It

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




Why I Want To Come Back

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

Day 7 quoteDay 7
Why I want to come back…

For years I wanted to run from the Foundation. It was something I was pushed into and I loved what it was accomplishing, but I needed more in my life. After she passed away it was hard for me to do the work. It felt meaningless and silly. The main reason for all of this was Isabella and it just didn’t feel right asking if my cause was gone. So I started to step away. I was able to bring an employee in and keep things afloat so that I could figure out what I was doing with my life while the Foundation could continue to grow slowly.

I went back to work. I really just stuck my toe in. I took a part-time technology-consulting job where no one really knew of my story or of Isabella. It was refreshing to be around people that didn’t hold me with white gloves, worried at any moment that I would crack. I could go to this job and do something completely outside of her and it was just what I needed. I realized that I was good at something again that didn’t involve taking care of a child, telling a sob story or asking for a donation. It was just a normal job, and I loved it.

Then something happened. We had a meeting set up to talk with Levine’s Children’s Hospital about funding research here in Charlotte. Just a casual conversation about where the funds we just gave them should be placed and what future needs they may have. We sat at a conference room table with other Foundations, heads of the giving department and one of the pediatric oncologists that I knew from Isabella’s time during treatment. As our discussions began, I noticed something about myself. I was falling back into my old-self. I was energized, passionate, knowledgeable and commanding. I couldn’t get enough of the information and it began to feel like the only people talking in the room were the oncologist and myself.

The current state of Neuroblastoma, the clinical trials, the funding, the hosptials… I couldn’t get enough of it. I was thirsty for the knowledge and I could feel myself coming alive again. It became something different for me being in these conversations the second time around. Maybe it was because I no longer had a life on the line. It took the emotion out of the cause and made it just a little less personal for me. The piece that it took out was just enough to draw me back into it. I was charged up and at that point I realized. This is my purpose.

People search their entire life for their purpose. Some never find it. But here I was, a couple of year under 40 and I was looking at mine straight in the face. All these years of running from it, only to find out it was what I was put on this earth to do. It’s been two months since that conference room discussion and now it’s all I think about. I want to be involved with every single aspect of the Foundation. I want to spend the rest of my life figuring out how to make this little idea of ours into something that is known worldwide. I want to really see how much money we can raise if I devote all of my time to it. What could we really accomplish if we were funding this cause with every thing we had?

I’m making it my mission to figure that out.

I want to come back and I can’t wait to get started.

-Isabella’s mommy



Why he was stronger

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

Day 6Day 6
Why he was stronger…

I am a good mom. I’m not a great mom. I got frustrated easy and my patience was thin. She would hate me for telling her that she couldn’t go to school and instead had go spend the day at the clinic and get a needle shoved into her chest. I have to tell her that she has to sit for 8 hours and be attached to a line and listen to other kids scream for hours while she gets chemo and tries to watch her American Girl Movie. By the time the transfusion started, we were barely on speaking terms. I got a lot of silent treatment over the years. I had to hold her down to get accessed so I was the bad guy. “I want Daddy”, she would say… as if things would have been different if he were here. She was also pissed at me because I made her wear matching socks that morning. I’m the worst mom ever.

Right about the time when I couldn’t take it any longer, he would show up. Daddy was here and everything was better. Her eyes would light up and a new child would appear. “Daddy!” she would say. “Hi baby! How are things going up here? What movie are we watching? Oh, wait this is my favorite. Can I watch it with you?” It was perfect timing because she and I were officially over each other by this point.  I was done catering to her, I was done carrying her, and I was done making bead necklaces. I needed to get out of there. He was fresh and new and would cater to anything she needed, and she knew that.

He could come in and cuddle her and make everything all right. All those times I had to hear her say, “ I want Daddy… “ was a knife in my heart. If Daddy were here, he would be the one holding you down while they pushed the needle into your chest looking for blood return to start chemo. For some reason, everything would have been better if it were done with him. But Daddy was working and keeping our insurance afloat, so she was stuck with me instead.

Many times it was hard for me to watch, this unconditional love between two people. Stuart can be a hard nut to crack but she cracked him and she was tangled up in his heart. They talk of this love between father and daughter in Hallmark cards and I personally never experienced it in my life. But often times I found myself jealous of the love and admiration they had for each other.

He got to be the one that said yes. Or who cares if she wants to wear different colored socks to school. When I was over the drama of her emotional episodes, he was able to step in and calm her. I was tired of carrying her back and forth to appointments. She was heavy and I knew she could walk. He would pick her up and cradle her against his body. I had lost my sympathy for the situation because I always had to deal with the backlash of her emotions when she felt like she was losing control. He could calmly step in and make decision based on facts and always had her best interested at heart.

It was hard for me at times to be the heavy and know that I was the one that was receiving the hatred from her when the doctors said her counts weren’t high enough to be released from the hospital. But I knew everything would be okay because he would come up and relieve me from the situation right before I started to crack. He would lay with her in that bed that I craved to be released from. He gave her the love and comfort that she needed when I ran out of it. He allowed me to recharge and come back the next day ready to face the situation.

I don’t know how I would of gotten through without him. He was constantly fighting for her, loving her, loving me, loving us. Being the love and support that she needed when I was on empty.

Even in the end, he did all the things I couldn’t do. He chose where to take her to be cremated because I could not know where that building was located in Charlotte. He picked out the beautiful gold box she was placed in, he paid for her final resting place, he spoke with the pastor, he bathed her after she died and carried her out of our house. There are things I was not strong enough to do, but he was. He didn’t think twice about doing them because for him, it was just more ways he showed his love for her.

He hasn’t been the same since she has left us. I don’t think he has ever experienced true love like that in his life. She loved him unconditionally and he has never loved someone as much as he loved her, including me. What they had was unique and every daughter should be so lucky to have a father love her the way that he did. He would of done anything to save her and she was the love of his life.

-Isabella’s mommy




Ib and Stuart in ocean