Tag Archive for: Grief

On the Seventh Year Since the Death of My Daughter (Queen City Nerve)

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Originally Distributed in Queen City Nerve Newsletter and on Queen City Nerve

Dear Charlotte, 

I remember sometime around a decade ago when I first came across Erin Santos’ blog. I’m not sure who shared it with me or how I came across it, but I was immediately enveloped by Erin’s raw writing style, confronting her child’s cancer diagnosis with honesty, fear, love and dark humor. I kept a picture of Erin’s daughter, Isabella, on my computer desktop back then as a reminder to check back in with the blog from time to time. The picture showed a 4-year-old Isabella in her family’s driveway with a pink flower dress on, her head bare save for a headband with a flower on it, if I’m remembering correctly. I remember every time I stared at that picture before going to the blog and I would think or say aloud, “Please don’t be dead.”

Until last Thursday, I had still never brought myself to read the post Erin wrote the day after Isabella lost her battle with cancer. Seven years later, it hits just as hard. I’m just as thankful for writing the post she shared on our website last Friday, on the seventh anniversary of Isabella’s passing, which of course uses Erin’s usual raw honesty to confront her feelings about moving on with her life and surpassing a dark milestone in which her daughter will have been gone for longer than she lived. While I know Erin will never forget Isabella, another thing that will never change as time passes is the life-saving impacts of The Isabella Santos Foundation (https://isabellasantosfoundation.org/ ), which Erin founded and has gone on to raise hundreds of thousands of dollars for pediatric cancer research and recently funded a $1 million leading-edge rare pediatric cancer treatment room at Levine Children’s Hospital called the Isabella Santos Foundation MIBG Suite. 

I’m not one to use this publication as a solicitation tool, but if you have money to spare, that’s one of the places I would suggest you put it. And the story below should give you a sense of why, because no parent should have to go through what Erin has gone through. 

Ryan Pitkin, 
Editor-in-chief
Queen City Nerve
Charlotte’s Cultural Pulse

ON THE SEVENTH YEAR SINCE THE DEATH OF MY DAUGHTER

June 28 marked the seventh anniversary of the death of Isabella Santos, whose mother, Erin Santos, founded the Isabella Santos Foundation. On that day, Erin shared three posts with us ranging from the day after Isabella passed to June 28, as she looked ahead at how to live in a world in which Isabella has been gone longer than she lived. 


read article on Queen City Nerve>>

I’m ready to be somebody other than just her mom

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Written by Erin Santos, ISF Executive Director & President

Erin, Grant & Sophia

We are moving.  Hoping to have the house on the market April 1st and in a new home between SouthPark and Uptown the day after the kids finish school.  I’m so excited I can barely stand it. This house that was once purchased 8 years ago was for a family I no longer recognize.  A husband and wife, 3 kids and dog and a cat has now dropped to a Mom and 2 kids. The house is huge (which I know is inappropriate to say) but we needed it when Isabella was fighting cancer.  My Mom was living with us on and off and with a revolving door of help – we used every inch of the home. The kids played in the yard because we needed to keep Isabella close and Bailey and Jake roamed free alongside them.  The Marvin school system was our backbone for support with an amazing free education and my neighbors became my extended family.

But 6 years after she has passed, a divorce, a dog that passed away and a cat that one day left and never came back – this house is a graveyard of my past life.  I have no idea how to fix things in the house (although I’m learning) and an acre of yard that the kids no longer play in has me dumbfounded on seeding, aerating, lime and who knows what else.  Other than Sophia’s best friend next door – we keep to ourselves and find our inner circle is completely new. In fact, the majority of people close to me have never met Isabella and sometimes one step removed friends don’t even know I have a child that passed until I throw it out on the table.  I need a change badly.

I have been going about this change fairly mechanical.  Any free time I get is spent devoting my time to a room, a closet, a drawer.  There are very few items in my house that mean much to me at this point. My goal is minimal living, kill all these toys the kids don’t play with and trinkets that junk up my life.   I’m plowing through each area with very little emotion. We had done a few passes on Isabella so luckily I’m not tripping over her in every drawer, which helps. I’m throwing everything away.  Tubs that have crap in them that I haven’t even looked in – the entire tub goes in the trash. If we haven’t used this in the last 60 days – it’s gone. Goodwill is making out like a bandit and my trash screams of a purge. 

Grant has been okay with the process.  He’s a lot like me with very little attachment to stuff these days.  Other than his Beats headphones, his phone and some items he likes to sleep with – the rest of it can go.  He is stuck in a little boy’s room and the promise of a new room is enticing to him.

Sophia would keep a speck of dust.  She struggles a lot with Isabella still and Mommy and Daddy not being together so her “stuff” is on lockdown.  The only way I can convince her to purge is her little cousin Eden who is 3. “Wouldn’t Eden love these books you read in preschool?”  Sophia’s heart is bigger than anyone I know – so of course, the thought of giving to her little cousin throws the book right in the box.  God, I love her.

Isabella’s room

The house is about halfway done now with the purge.  I’m enlisting the help of my Mom to come for Sophia and Grant’s room because I need a little reinforcement.  But there was one last room that deserved some attention and I have been holding off for 6 ½ years for it. The time had come.  My hand was being forced.

My first step was explaining to the kids what I needed to do.  I had to assure them her stuff was not being thrown away. In fact, it’s just being boxed up and moved with us so we can still have her in our new house.  I was just merely “cleaning and organizing” her room so we can find a better place for it when we move. They seemed okay with this idea. However, I knew that I couldn’t have them there for it because they would freak out if they watched.  Thankfully, two families graciously took my kids for the day and night so I could focus on the task at hand.

Now, how do I focus on the task at hand?  I knew myself and I knew that I had to be very strategic in how I went about this.  If I didn’t do this right, I could tailspin into something that could put me under water for days.  Do I bring my Mom down, or will that be too hard? Should I bring in some friends who don’t have a connection to anything?  I honestly almost went this route. But, I figured that I would be too quick with the process because I didn’t want to explain every item I picked up.  Otherwise, that would be another tailspin. Then it finally hit me. Miss Chrissy. If Isabella wasn’t with me or my mom, she was with Miss Chrissy.

Miss Chrissy & Isabella

I knew Miss Chrissy would be perfect because sometimes she comes over and just to kick herself in the heart she goes up there.  She fingers through her dress (that she mostly purchased) and revels in the tailspin for a brief time. This is usually done at Halloween when she comes over and we drink waaaaay too much on the front porch, passing out candy and listening to 90’s hip hop and some 80’s favorites.  It never fails, the alcohol content rises and we find ourselves stumbling up the stairs. She and I like to torture ourselves together.

Of course, she accepted the invitation because it may be the last true torture.  This woman… there is no one like her. Love.

She arrived and I tried to be organized.  Boxes, plastic bins, loud music… I was ready.  We walk in the room and we stand there quietly.  Then I start to cry. Well, that was fast. We start to attack it piece by piece and the conversation stays light.  She gets the update on my crazy life and I get to ask her about hers. We stop every couple of seconds as we hold something up and we just pause.  A large sigh comes over the both of us.

Isabella’s Drawing

We have a system.  Trash, goodwill, Eden and keep.  The system works well because the trash really is just stuff others have brought into her room to play with.  Sure, there are random beads and broken Barbie arm but otherwise, it filled up easily. Some things were hard. It pained me to get rid of anything that her handwriting was on, which was honestly stupid.  I remember saying, if Isabella were here – she would say, “Mom… why are you keeping that? It was a homework assignment.” But, I figure in a couple of years I will hit those papers again. For today – I wasn’t ready.

Goodwill.  Stuff that I have no idea why she had, who gave it to her and no memory of her wearing.  I have a memory that is a steel trap, so if I don’t remember then this is why Miss Chrissy was perfect because she would remember.  “Do you even know what this is?”. NOPE! Then off to Goodwill it would go.

Eden.  This was easy too because if you know Isabella, you knew she was picky about her clothes.  Anything that was pants – definitely for Eden. I’m not sure if I can remember her wearing pants 10 times.  She hated them because of how they fell on her bone marrow scars on the front and the back. And if she did wear them, it was because I forced her and a day of Mommy hate was to come, and I hated those days.  Needless to say, Eden has enough pants to last her awhile.

Isabella’s pumpkin outfit

Keep.  This is where things got weird and I thank god we weren’t being watched.  The mounds and mounds of dresses that Chrissy bought her that were over the top.  These dresses were ridiculous and are why Janie and Jack are still in business today.  Huge dresses with sweater cover-up and matching headbands. The outfits that were purchased specifically for holidays that you could only wear maybe twice.  My favorite, the orange tulle ballerina skirt with the cream shirt that had pumpkins on the collar and the matching cream button-up sweater with pumpkins on it.  One outfit sends you spinning into a memory. She wore this Janie and Jack pumpkin outfit (estimated value $150, ridiculous) one October and got a massive nosebleed due to low platelets.  We were in her bathroom and it was pouring out of her, all over this outfit. We couldn’t stop it. We called Miss Chrissy to come and stay with our kids and rushed her into the car – driving 30 minutes to Levine.  We stopped at a light and flagged down a police officer to escort us up, allowing us to run lights. She was bleeding everywhere. The outfit was ruined and it was all that mattered to her. Not the fact that she was bleeding out in the back of Stuart’s truck.

In Miss Chrissy fashion,  the outfit was fully replaced – with a matching outfit for Sophia.  The both wore these outfits together proudly almost into December. That is what you call a keep outfit.  

I could go on for hours on the clothing but I will spare you the details.  Although, just to add a funny story to the mix. Let’s talk about Isabella’s underwear.  Bear with me. If this girl wasn’t in a full-length gown, she was just in her underwear. A constant mix of fevers made her body temperature a little above normal.  So most times you were with her, she was walking around in a pair of princess underwear. We open the drawer and this one shocks us. Every little pair in the drawer I could see her in.  But now we feel weird because we are saving a little girl’s underwear. I’m actually laughing as I type this because we felt like creepy women. But it was actually an outfit. We couldn’t figure out what to do.  “I feel weird taking a pair!”, Chrissy said with a laugh. But I got what she meant. We saved a few in her clothing box and decided not to judge ourselves. I swore if it had a memory, it needed to be kept. So there.  I kept some undies. Ugh.

Isabella’s unopened letter to her best friend

The rest of the day proceeded and we found lots of really amazing things.  We found so many pictures she kept of her and Soliel (her best friend) and even notes she had written her that were still sealed.  We hated to open them but when we did we found they just said things like asking her to come over. They were simply just notes a 7-year-old writes her BFF.  We kept them all. We found pictures she had drawn of her and Grant that we knew he would love. We found a box of letters her class had written explaining how each of her classmates were going to live their life differently now that they met her.  All saved.

In the end… we finished.  Miss Chrissy took some items, pictures of them together etc.   And then there she was… all in boxes.

I don’t remember what all I said to Chrissy when she left but I know it wasn’t what I really needed to say.  She needed an hour-long thank you for what she did for her, for me all while killing herself I’m sure in the process.  The definition of selfless. I hate that she doesn’t have her anymore and I know she aches as much as I do. I hate that.  But all I can give her now are these torture moments – that’s all I have left.

I just rocked

I took her sheets off the bed to wash them and then I just sat in the empty room.  I sat in her rocker that I used so many times to rock her to sleep. I just rocked.  Then I sobbed like I never have – for a long time. Sobbed like it just happened all over again, which I rarely do anymore.  I couldn’t stop. I think I just let it happen because the house was empty and there was no one there to console me or hear me.  I was truly just crying about losing my daughter and how completely awful the whole thing is. I can’t tell you what was all going through my head.  I can only describe it as the worst pain I have felt in years.

I could barely move the rest of the day.  I ordered food and seriously ate a bowl of pasta in my bed. Forrest Gump was on TV and just stared at the screen.  I was in a full coma of heartache. So many people reached out to me that day and I’m so thankful for that. I’m not sure anyone could understand what that was like, but it really felt like my last goodbye to her, which is silly.  We talk about her every day in our home, at work and casually in life – but for some reason, it felt different. Closure that I had never had – but I needed.

And now we just have to move on.  I’m ready to be somebody other than just her mom.  I’m honestly ready and excited.

 

She Left Us Before 10

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The Best of Times, The Worst of Times: Two Sides to Every Story

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Contributed by Wheela Sunstrom

They say time heals all wounds

Isabella Santos lost her battle to neuroblastoma at the age of 7.

For some, this is a myth…something that people say because, well, they don’t know what else to say. It’s something we hear throughout our lives, but never really weigh the meaning of until you have to. Because for some, no matter how much time passes, grief never goes away.

We have learned in our ISF journey that grief and happiness are all about perspective. When people perceive our organization, they generally see all of the good things we do!  From funding research and programs to supporting families in need to running events to a myriad of other accomplishments, they see hard work for the greater good. They see Isabella’s smiling face printed on glossy paper or cast high on a projection screen, their hearts overflowing for the brave little fighter.  They see volunteers, board members, sponsors, doctors, nurses, and families – a sea of purple – working tirelessly, but positively, to effect change.  They see congratulatory hugs, high-fives, happy dances and the like when something great happens.

What they don’t always see is the other side.  Though Isabella’s mom would normally be included in the list above, it’s a hard realization that every time ISF does something amazing, she is reminded that her child wasn’t afforded the opportunity. This is where happiness and sadness become muddled.  When Isabella’s name is attached to new programs, buildings, research, and anything else, Erin experiences the proudest moments of her life. And also the worst.  Her perspective has always been real and raw, shedding a different light for those who may only perceive our progress.

Isabella’s birthday is no different.  On the one hand, ISF is celebrating her life and the legacy she left behind.  A legacy that led to a momentous milestone in the addition of an MIBG treatment room to deliver targeted therapy to high-risk neuroblastoma patients.  This. Is. Huge.  ISF celebrates the incredible, rare opportunities this treatment room will provide for patients and their families. We shout, we high-five, we do a happy dance. It is a culmination of tireless work in Isabella’s memory, aptly unveiled on her 13th birthday. On the other hand, her mom is reminded that this was the treatment Isabella received a little too late. It stings. It gnaws. It burns.

We have learned everyday that grief and happiness can coexist. We will still smile and share the joy of our latest accomplishment, the gift of the MIBG treatment room. It’s okay for us to be happy about the things we are doing. And it’s okay to celebrate the birth and life of the brave little fighter on what would have been her 13th birthday.  Because, without her, none of this would be possible.

And it’s also okay that there is another side. The side where heartache sits. Because sometimes they go hand-in-hand.

13 – What Should have been, what could have been, and what it is

Written by Erin Santos, Isabella’s Mom

Erin Santos & daughter Isabella. Isabella lost her battle to neuroblastoma at the age of 7.

Tomorrow Friday, March 9th is a big one. 13.  Sure, each birthday number has a different meaning, but when I hear the number “13”,  it’s a big one for me. Luckily there are only a couple more that might really be daggers in the heart. 16, 18, 21 – I see you all waiting for me off in the distance. I will get to you eventually, but tonight – I’m staring the dreaded 13 right in the eye.

I guess because it means she no longer would have been a kid. Teenager is a scary word. First of all, I feel too young to have a teenager. Maybe because I’m single, I listen to dirty rap music, stay out too late,  and want to sleep until noon on the weekends – all traits of a teenager I guess. But then it had me thinking – is that what teenagers do? In true Erin form I constantly find myself avoiding girls her age. I don’t want to stand next to them because it would tell me how tall she would have been. I don’t want to listen to what they are talking about or think about the fact that they all have periods now and wear bras. In my head it seems crazy to me that she could have ever been one of those girls. My mind just won’t let me go there. But as I sit here and think about her, I realize that I prevent myself from knowing what 13 year olds girls are like. How do you know about them if you don’t have one? It’s definitely not something you can look up on the internet without getting flagged. TV doesn’t really depict true 13 year old girls either. So I decided to research it a bit.

Isabella Santos lost her battle to neuroblastoma at the age of 7.

I find an unsuspecting person who has a teenage girl and just say, “Tell me everything she is into”, which I’m sure is a creepy question. But as they start talking I find myself  ridiculously-filled with questions that I almost have to sit on my hands. Questions start out basic enough, like: what kind of music does she like and does she have a boyfriend yet? Then, 40 questions later, I feel like I’m just getting started and have to prevent myself from having the full 2 hour interview I really want.   They listen to all kinds of music from electronic to rap to everything in between. They like SnapChat and Instagram Stories. They have boyfriends who they hold hands with at the mall. They only see this boy in group settings but ignore him at school. They are all at this tipping point of looking like kids one minute, then transforming into a woman the next, with the help of a dress and some makeup. They are into fashion. They binge Netflix. They want to go to the Melting Pot on their 13th  birthday with their friends and catch a movie after. Their girlfriends occasionally turn on them and the drama that ensues can be pretty hurtful. They are sweet and moody all at the same time, probably due to the period they just got for the first time this year. They can curl up to you like a baby one minute, but then have the most adult conversation the next. I could go on and on…

The coolest thing about finding these things out isn’t always the answers. Sometimes it’s hearing the excitement in the voices of parents as they talk  about them. While all the attributes they are telling me feel like tiny knives going into my heart, I find myself knowing that I, too, would be that boastful parent.  She would drive me crazy I’m sure – but all the little things that would have made her up would have been a little piece of me – the good and the bad. It would have been exciting to be a part of her ride to 13. As I digest all the attributes of a “normal” 13 year old, I find myself with this gut- wrenching feeling. Sure, some of it is jealousy… but some of it is the thought that this is what she should have been like.  Instead, I look at the life that was more realistic for me. She could have beaten the cancer, but then we would have had a 13 year old that probably wasn’t anything like the girl I described above. When you sign off on treatment plans, the list of side effects is an afterthought. To be honest, you really stop even reading them. The list is so horrible but at the time it doesn’t matter. You are just trying to keep her alive.

I think about the 13 year old that would have survived after years and years of grueling treatment and over 5 relapses.

Isabella Santos lost her battle to neuroblastoma at the age of 7.

She has hearing aids due to the cisplatin that you gave her over and over. She is missing teeth from the chemotherapy cycle they properly named, “Kitchen sink” because that’s what it was. She’s a full 18 inches shorter than everyone because her body was never able to grow. She doesn’t play sports because her bones are so weak from the radiation you hit her with over and over. She struggles in school because she now has learning disabilities thanks to 5 years of treatment. Oh and she is probably held back because she missed so much school from being in the hospital so much. She is missing patches of hair due to brain radiation that prevented some places from ever growing back. She has trouble making friends because she is different and the friends she has feel like pity.

Let’s not even talk about a boyfriend or the road she has ahead of not being able to have children. She hates you because she is different and she blames you for it. And just when she figures out how to adapt to the cards she is dealt, she is diagnosed with ovarian cancer at 15 thanks to the high probability of a second cancer. This. This is what could have been.

You want to keep your child alive, every parent does. But sometimes they don’t survive. And you look at what could have been your life if they did and that scares the shit out of you too. I oftentimes wonder if she was taken because what could have been might  have just been worse. I know you aren’t supposed to say that because having them alive with a million problems is better than not having them at all, right? Right?

Erin Santos & daughter Isabella.  Isabella lost her battle to neuroblastoma at the age of 7.

Instead I get to look at what it is. For me, her 13th birthday will consist of opening my eyes tomorrow morning and being crippled with pain inside. I will get Grant and Sophia off to school and sit in my kitchen alone with a cup of coffee and cry my eyes out. It will eventually stop and I will get in the shower and distract myself. I will pick out a purple dress and dry my hair. I will pray that my eyes are not puffy and put on makeup to hide my face. I will drive up to Levine Children’s Hospital and cry again as I make my way along the path we drove for years to get her treatment. I will tilt my head to the side so the tears do not remove my eyeliner. I will put on my best ISF face as I enter the lobby of the hospital, knowing to keep the conversation light because if the wrong person says the wrong thing to me, I will find myself imprisoned in the bathroom.  I will make an inappropriate joke and thank large donors and supporters for coming to celebrate the new MIBG room we are building in Isabella’s name. I will carefully not watch the clock strike 11:12 am, the time she was born.

My ISF team and I will go to lunch where I will drink wine and pray they keep the conversation light. My drive home will be spent calling my Mom who will cry with me and tell me how much good has come from her short little life. My sister will call and will know to talk about everything except Isabella.  Someone will leave an anonymous gift on my porch to let me know they are thinking of me. The kids and I will take flowers and balloons to her site and they won’t really grasp the level of this visit but will kiss her stone and say “Happy Birthday”. I will sleep off the wine, troll social media then try to plan a night out of the house. My girlfriends will take me out and get me stupidly drunk, trying hard to have no real conversations with me about what my day has been like. They will try hard not to touch me because if they know me, a hug might break me in two. I will anxiously wait for the clock to strike 12:00, knowing this awful day is behind me. I will fall asleep in my clothes.

That is what Isabella’s 13th birthday is because my daughter got cancer and she died. Not at all the day I had planned for her when she was born, but now it is what it is. But on March 10th and in true Erin fashion, I will get out of bed and start another day, keeping the mission moving.  24 hours goes by slowly and painfully but in the end, it’s still just 24 hours.

I can do this.

********************

Sydney, 13 year old, wishes to visit the Harry Potter museum in London.

Let’s Become a WishMaker Together in Honor of Isabella’s Birthday

Make-A-Wish granted Isabella her wish and gave her the best days of her life.  Make-A-Wish also gave her family the best memories of theirs.  The positive impact wishes give to kids and their families are invaluable.  

There is a girl fighting cancer, Sydney, who is 13 years old and wishes to visit the Harry Potter museum in London. We can’t think of a better gift than to honor another girl’s wish on what would have been Isabella’s 13th birthday.

Please donate to help make Sydney’s wish come true.  Donations of all values will help us collectively reach the $6,000 fundraising goal by March 31.

DONATE HERE

*Donations made to this campaign are a gift to the mission of Make-A-Wish. Each contribution will be pooled with other gifts to grant the wish of the child shown above or of other eligible children. Costs shown are estimates. All wishes listed will be granted.

Grief Shocks…

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It will hit you like a rock – how so very MUCH you miss someone, your breath catches, your tears flow, and the sadness can be so great that it’s physically painful. Like the wind knocked the air out of you. The aftershocks of losing someone, even if it’s been five years… the grief shocks.

The loss of a child is a grief that lasts forever. Grief comes on in waves, especially during holidays, anniversaries, and birthdays. There will always be another year older that she should have been, her handmade ornaments will always be placed on the Christmas tree by someone other than herself, and the empty chair at the holiday dinner table will never be filled.

Isabella in Chistmas Jammies

Last week we ran into Mrs. Chrissy at lunch. As many of you know, Chrissy was Isabella’s best friend. Yes, Chrissy is an an adult… but if Isabella wasn’t with her parents or grandmother, she was with Mrs. Chrissy. They did it all together. We exchanged small talk before deciding to all sit down over lunch to catch up. Immediately her lip started quivering and her eyes teared up. She started to explain that she has been doing so well until this past week… she is tripping all over Isabella. Memories hurt, especially during this holiday time. Memories that are causing grief shocks.

“I laid in bed and decided to pull out my Sudoku book, it’s been years since I have brought myself to play. I open up the book and who was the last person to work on a Sudoku puzzle? Isabella. Its like she is making sure I don’t forget her.”

Isabella, Grant and Sophia in Christmas Jammies

Isabella was Chrissy’s shopping partner. Especially during the holidays. Chrissy even bought Isabella a Hanukkah outfit, just an excuse to buy her a pretty dress. Pictured here is Isabella with Grant and Sophia… in Christmas pjs that Chrissy bought them. Chrissy went on to mention that she still hasn’t been able to put up a Christmas Tree in her house since Isabella died. She continues to tend to her memorial site at Calvary Church and took Isabella a Christmas Tree instead.

Grief looks so different on everyone. No grief is right and no grief is wrong. And no amount of time, even if it has been five years, will change the way one feels. Our hearts go out to all those grieving and tripping over their lossed loved ones this holiday season. We hope your grief shocks become a little less intense and you can breathe in the moment of the season.

Give a tax deductible contribution in honor of someone special who is currently fighting cancer or in remembrance of a loved one who lost their battle. It’s a form of action and beautiful memory.

DONATE: isabellasantosfoundation.org/donate-to-isf/

(Remember that many companies will match your contribution. A great way to increase your impact.)