September 7, 2013

Smarty Mom: Erin Santos

If you’ve been seeing a lot more purple around town, it’s probably partly due to this lady: Erin Santos. She’s many things to many people, but for most of you, she’s Isabella Santos’ mom. Isabella passed away last summer from neuroblastoma, a rare type of pediatric cancer. She was one of the local faces of this terrible disease. She grabbed everyone’s heart quickly, and her sweet smile was seen all over town – from billboards on I-77 to pictures of the Isabella Santos Foundation 5k that’s been held for the past six years.  Her story – told on Caringbridge with such raw, eloquent emotion by her mother, Erin, was followed by thousands locally and nationally. Today we follow Erin’s personal blog, Summer of the Dragonfly: Writings from her Mommy to get a glimpse into how a family moves on from the unthinkable.Erin Santos

We first introduced you to Erin last year around this time. September is Childhood Cancer Awareness Action Month. Erin coined that phrase. Action. As in Do Something Right Now. As in Children are dying and something has to be done to stop it. Now. As in This is not going away without Action.

She is the leader of the Isabella Santos Foundation whose dedicated team of volunteers truly inspire us. Watch out: this organization is on FIRE. They are making a HUGE difference, but they need our help to make it bigger. Our action. The action of moms, dads, grandparents, boys, girls, tweens, teens all over the city. And what better time to start than September? Childhood Cancer ACTION Month.

So here’s what you can do (and what we know you’ll want to do after reading Erin’s story below): sign up for the ISF 5k Kids for Cancer on September 21 – get the whole family there. Who cares if you’ve never run? Just walk it. It’s only 3.1 miles, and it’s seriously the BEST 5k in town. Plan to make a morning of it because there is a HUGE party after the race – complete with one of the best silent auctions we’ve ever seen. Wear purple. Isabella picked purple as her foundation’s signature color. Purple that race OUT. We’ll be there – pink ‘n green aside – decked out in PURPLE and handing out purple Rainbow Looms handmade by Charlotte kids (check out how you can get involved with Smarty service project right here).

Want something more to do than run? Donate money. Donate blood. Donate platelets. Volunteer at the Ronald McDonald House. Help someone else whose child has cancer. Just do something.

Then when you’re done doing something, spread the word. Facebook, Twitter, Instagram. Social media is HUGE for non-profits – tag the Isabella Santos Foundation and the ISF 5k on Facebook while you’re at it. (Make sure to also “like” and “follow” both – when you see all the amazing things coming from that organization every day, you WILL get involved. @TheISFoundation is the Twitter handle.) Good work is contagious.ISF 5K for Kids Cancer

The ISF has coined the phrase #isf3wishes – you’ve probably seen it all over social media. Isabella’s 3 wishes were to 1. Beat Cancer; 2. Grow Hair; 3. Live my Dreams. What are your 3 Wishes? Get the kids involved – post to social media with #isf3wishes. Create awareness through action.

We recently approached Erin to open her life back up to us again, and she didn’t hesitate (thank you, Erin!). We asked some tough questions – ones we’d never want to answer – but in typical Erin fashion, she delivered more than 100%. We wanted to add in a few “fun” Smarty Mom questions because Erin is us. She’s me and you. She’s not just Isabella’s grieving mom. She’s real. She’s unfiltered. Erin deserves to be highlighted as Erin – just like every other Smarty mom.

Erin, we think of you every single day and hope our actions this month and the rest of the year are half as contagious as Isabella’s unbelievable spirit.

Smarties, here’s Erin!

Smarty Mom Erin Santos

Smarty Mom Stats:

Married to:  Stuart Santos, for 9 years
Children: Grant (7 yrs old this month), Sophia aka Phia (3 yrs old)
Years in Charlotte: 14 years
‘Hood: Marvin Creek
Hometown: Urbana, Ohio
Alma Mater: Ohio University

What does “it” feel like? What does losing a child really feel like?

You know how people tell you that a man thinks about sex about every 3 minutes and you think, there is no way that is possible?  That is how often you think about your child when they die.  You just have to learn how to cope with it and not say something every time you think of her or people might check you into a mental hospital.  Almost everything, everyone and every place can remind you of them.

Isabella’s spirit is still alive – VERY much alive. Where is she most alive to you?

Definitely when I’m in her room.  Every once in awhile I have to go in for something and I have to open drawers and see pajamas or pretty dresses that still smell like her and her pink cowboy boots on the floor – it’s like she is standing next to me.  I just want to crawl in her bed and surround myself in her.  Everything is so vivid about her in there.

What would you tell yourself if you could go back to June 28, 2012, the day Isabella died?

To slow down and just lay with her.  My husband and I were concerned with making her look peaceful and beautiful before anyone came in and were worried about what would happen to her body quickly after she passed that we kind of panicked and moved swiftly.  I also don’t think we realized the severity of it – it was almost like an out of body experience.

What would you tell Isabella?

We did an excellent job of telling her how much we loved her, that she shouldn’t be scared, that we would never forget her and we were right there till the end.  I wish I would of told her to look out for us all and protect us just as we have done for her.  And that I will always dream of the day I will see her again.

The one-year anniversary of Isabella’s death was just this past June. Was it harder or easier than you expected?

It was so much harder than I expected.  We had to get out of town because we needed to protect hearts a little.  I was also dreading the day that I could no longer say, “this time last year she was here doing x.”  Once you hit that one-year mark, things change and people expect you to start moving on.

What has been the best advice you’ve gotten this year?

To take some time for myself and find out who I am without defining myself as Isabella’s mom.  Learn how to be a wife and a mom to my other two kids without cancer in my life.  I am also constantly encouraged to keep writing.  It has become therapy for me.

What has been the worst?

I’m COMPLETELY AWFUL about taking advice on grieving.  It’s hard for me to hear anyone’s advice when I really feel like they really don’t understand.  I would bite off anyone’s head that told me I should talk to someone or be on medication in the beginning.  People learned quickly to keep advice to themselves.  L  I’m getting better about it though..  I know they are just trying to help.

What is your day-to-day life like today (now that you’re not Isabella’s caretaker)?

I have finally been able to spend more one on one time with my kids.  I don’t miss anything when it comes to them because I missed a lot over the years.  I have also thrown myself into the Foundation quite a bit.  (probably not at a healthy degree)  Things have really taken off and I feel like I need to make this into something or close the door on it.  So lots of my time is spent on that.  Lots of relationships in my life are finally getting the time they deserve too, including time for myself.  I get to exercise, meet people for lunch, have date nights, etc… Many of things I never got to do.

How are Isabella’s little brother and sister, Grant and Sophia, doing today?

Sophia was only 2 ½ when it happened so she doesn’t have much memory of it. She still colors pictures for her and says, “We have one missing”.  Probably because we talk about her so much.

Grant has his ups and downs.  I think he craves attention from us.  He will seem fine for a while and then come home with pictures in his book bag that he draws of the two of them together.  Or I will catch him listening to her favorite songs in her bed.  He goes out with me to her memorial occasionally but he struggles when he is there with lots of questions.

How has your relationship with them changed?

My relationship with them has gotten so much stronger.  They both just want my attention so I like that I can give them the time they deserve.  Grant is so open with me about his feelings so we are able to talk about anything.  Sophia is so independent and I am just enjoying watching her grow into a little girl.

What are some ways you see Isabella in her siblings?

I see Isabella in Grant in his heart.  He is so open to anyone and will be anyone’s friend.  He is very compassionate and caring.  He also just wants to be snuggled with – something she adored.

Sophia is so much like Isabella. She shares so many of the same hobbies and interests that Isabella enjoyed.  She loves everything girly and pink and could sit for hours and do art while she sings Little Mermaid songs. She actually looks so much like her too, which can make it hard but good.

The Isabella Santos Foundation is Isabella’s legacy. What do you want your legacy to be?

I really want to do something global with the Foundation.  I want to make such a huge impact that what we did really saved lives.  Maybe write a book that will give insight to others in this situation.  I also want my kids to be able to say one day that I was an amazing mother who gave everything I could and more to them, even after losing a child.Isabella Santos Foundation

Now for some fun Smarty questions to get to know YOU better:

What do you wish everyone would stop talking about?

All the criticism people give to girls 18-25.  Everyone is always beating up these girls like Amanda Bynes, Miley Cyrus and Lindsey Lohan for doing crazy things.  We were all crazy during those ages and were definitely not role models either.  Oddly we never crack down on guys for doing these things.  These poor girls just need guidance – not the cover of magazines.

What do you wish people would start talking about?

Cancer is an epidemic.  I really think that there is something out there that we are consuming in our daily life that is giving us all this disease.  It is killing SO MANY PEOPLE and all we can talk about is when Jennifer Aniston is getting married?   I feel like every day I hear of someone new getting cancer but we aren’t doing enough about it.

Favorite meal? 

Spicy Tuna Rolls or anything from Del Frisco’s

Favorite cocktail? 

Mandarin Vodka and Sprite

Favorite place to shop for yourself in Charlotte? 

Nordstrom’s

Favorite place to escape? 

St. John, USVI

Your #isf3wishes for your family over the next 5 years?

1. To find pure joy in holidays again.

2. To have work/life/happiness balance.

3. To be okay making new memories as a family with Isabella always in our heart.

If you could scream something from the rooftops right now, what would it be (really hope it’s not “STOP ASKING ME QUESTIONS!!!”)?

I’m trying the best I can!

6 Responses

  1. Arlene brown says:

    Good job Erin! With love from Florida

  2. krista penman says:

    Stay strong…you are a super woman -mom ..lots of love from Scotland

  3. WTG Erin!! You are an amazing Mom and a role model to all women!! <3

  4. Tyler Rae says:

    You, Super Mom, are an inspiration. God Bless you and your family.

  5. Robin Pointon says:

    Erin has got to be the bravest mom I know. To lay down & hold your child in your arms as she passes through the gates of heaven has got to be THE hardest thing in the world to do. And she did it with such love, strength, compassion…..I am speechless when I think of this mom. I wish I had half her strength.

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