My bleeding scab

Days, weeks, sometimes months go by without a tear shed.  I’m learning how to wrap her up and keep her in a dark place inside my heart.  It doesn’t mean that a day goes by without her on my mind, I’m just learning how to live with it.  I’m trying to do things to make my life without her easier and sometimes that means not putting her in front of me.  I don’t visit her site once a week anymore.  I find it’s best for special occasions or a random drop in.  Visiting her on a set schedule just wasn’t working.  With her birthday and Mother’s Day behind me, I felt like it was going to be smooth sailing for a while. Yes, the anniversary of her death is approaching but I have a couple of weeks to figure that out.  Even Foundation events become more centered around what we are becoming as opposed to the reason why we are here or what we didn’t accomplish in time.

But then I have an event that brings it all back.  To protect myself I have learned to be a country mile away from our PR video.  I can’t hear the music, her voice or even acknowledge that someone in the other room is looking at her on the screen.  An amazing group of people came to Charlotte and through a contact that came across our story by chance – I was speaking to them about ISF.  The door opens, which means the video is over and it’s safe for my heart to walk in the room. And then close to 100 people are on their feet in a standing ovation.  I walk in stunned and realize half the room is wiping tears from their eyes.  Sweat beads form on every place on my body.  I find myself at a microphone and I’m stuttering.  I’m telling the story but I’m not telling it eloquently.  This story is so familiar and I know which parts of it are hard to get through, but suddenly it’s all hard.  I’m losing my train of thought, I’m saying “um..” every other word, I can’t make eye contact.  I’m failing and I’m not recovering.  To be honest, it’s all a blur to me and I’m revealing close personal things about my anger and sadness to a group of strangers. What just happened in this situation is that a scab was picked and I’m bleeding fast.  Once I realize this, I try to wrap things up quickly and my instinct is to run out of the room and never look back.  I won’t ever see these people again so I could probably get away with it.  But I stand there, dripping in sweat, wiping tears off my neck.  What the hell just happened?

Everyone is a little stunned I think and some come up to me, but I can tell they are scared to.  They should be because even if they say “Thank you”, it cracks my shield even more.  We decide to head out of there.

I must enjoy torture.  We immediately head over to Levine Children’s Hospital to help these people I just vomited on, conduct a carnival for the sick children.  I drive my car around and around the parking garage.  I could do this blindly because my car and my hands could do this blindly.  I enter the lobby and the smell brings me back.  It’s what i would compare to walking into an elementary school.  The smells of pencils and glue for you are the equivalent to the smells of band aids and cleaning alcohol for me.  Once my prison – this place is like an old hat for me.  Only here I have learned how to behave myself.  I can see old faces and give hugs and say hello.  Thankfully I don’t run into Dr. Kaplan because the sweat has since dried from my back.  I watch the bald children enjoy themselves and I know that what we are doing is worth it.  One boy catches my eye.  He is bald and he has new stitches on his head from a recent brain surgery.  I know that fresh scar because it’s scary.  It’s like Frankenstein.  It’s hard to hide and people stare and say stupid things.  I so badly want to stop the Mother and say, “I’ve been there”.  But I would have hated that if someone said that to me.

I try to shake off the day and shower it off.  I’m meeting this group of strangers out on the town tonight.  I’m wanting to meet them to try to redeem myself.  That person you saw is the worst person I am.  I don’t know who that was and I’m embarrassed that I showed her to you.  I put on a “going out” dress and decide to show them that I’m actually just a normal person like the rest of you that had something really shitty happen to them.  That’s all.  I’m just normal.  My girls and I are ready to dance the night away and I’m greeted by them with a round of applause.  I’m in a tight dress with eyeliner on and they are clapping for me.  Here comes the body heat.  My complete collapse earlier in the day sparked a commitment to a large donation to the Foundation.  And I’m being told this in my little bar dress.  I’m stunned beyond words and want to run but I stay and properly thank them for their generosity.  Can I get a drink please?

The rest of the night is a blur of self medication as I try to forget my own horrible story.

The next morning I wake, still in my clothes from last night.  I clean off quickly as I’m getting picked up in 15 minutes.  My wonderful development director sees me walk out to her car and her eyes are wide.  Yep.  It was that kind of night.  I give her a quick download of the sizable donation and the night ended just a couple of hours ago.  Now I must pull it together to meet with a family who lost their daughter to Neuroblastoma at the age of 2 after a fight that lasted under a year.

I’m composed, or so I think to have a business meeting.  How can our organizations work together in our daughter’s memory.  I’m drinking my coffee with a shaky hand and sunglasses on.  This amazing stranger sitting across from me proceeds to do exactly what I did just 24 hours earlier.  She reveals her daughter’s entire story as she cries in pain.  The memories, like mine, are so precise and awful.  We sit at the table and sob as we listen to the nightmare that is all to familiar.  I think to myself how lucky I was to fight for almost 5 years with Isabella.  I was always in a way preparing for her death.  But when your child is taken from you after just a couple of months, there was no time to prepare.  There was only reaction to horrible news and then like that… she’s gone.  Her scab was picked and she was bleeding at the table and I know what that is like.  There is no way to stop the bleeding – you just have to let them bleed.  I wished so badly that she and I were alone in a quiet room and not sitting outside of a coffee shop for the world to see.  When our scabs are ripped off, very rarely are we in a private place.  This happens unexpectedly and you aren’t able to stop.

I came home from my meeting and just sat in my bathroom with my head in my hands… crying.  How unfair that two seemingly normal people have to have times like this where we look like we should be committed.  Aren’t scabs supposed to heal and go away after time?  After two years, shouldn’t the scab be harder to break?  Shouldn’t we just be able to have normal lives after all we have been through?  But we never will.

I compose myself but look like shit.  I have to go to Grant’s school for his end of year party.  Just like the first day of school, it is a reminder of what she should be experiencing.  The kids are wild and happy and can barely contain myself.  We watch a video of the year the kids have had and each child’s picture is shown… sitting on Isabella’s memorial bench outside on the playground.  A beautiful child’s face, beaming their toothless grin into the camera.  But next to their face is a little plaque reading, “In Memory of Isabella Santos”.  EACH.  FREAKING.  KID.  I stand in the back of the room and shake my head.  Knife in the heart with each picture.

Calvary Graduation

Calvary Graduation

I leave early (thank god) and pick up Sophia from her last day of Calvary.  I walk through the parking lot, passed all the children in their yellow Kindergarten graduation gowns with balloons.  When it rains, it pours.  I quickly grab Sophia and give her teachers sobbing hugs.  I drop Sophia downstairs, draw the shades and crawl into bed.  Will this day please end?

I’m finally awake this morning after a well needed full night of sleep.  I get to pick up my nieces today for a full week of summer fun.  My 48 hours of misery seem to have all but left.  I had a nice dream about her as I was in and out of sleep this morning.  Maybe my reward for the pain I suffered over the past two days.  It’s like she says to me, “I’ll give you a break Mom.  You have had enough.  Go and live your life for a while…  But you know I will be back soon.”

 

 

Celebrating Birthdays Without Her

Baking cupcakes with her AG doll.

Baking cupcakes with her AG doll.

She would have been 9 on March 9th.  Two weeks from today, actually.   Right now I should be sending out an Evite for the group of girls who she would call her best friends.  I should be reserving an art studio or a horse farm so she can do something she loves with the people she loves.  My husband and I should be picking out the perfect gift that we have been having trouble putting off buying her for weeks.

Instead I am trying to plan a day around celebrating her short life.  It was just two years ago that we celebrated her last birthday with us.  So many of her birthdays were spent holding our breaths, praying this would not be her last, making our own wish as she blew out the candles.  There were ones where we didn’t even feel cancer breathing on the back of our necks.  Those usually ended up biting us in the end with a call from a doctor the next day saying she was riddled with cancer.  We would tell them they must have the wrong results because just the day before she laughed and played in a swimming pool with her friends.  How are these normal child birthdays for a parent?

Her birthdays are full of mixed emotions and memories for me.  And now that she is gone, I find that I’m once again unsure of how to feel on her day.  How do you properly pay tribute to a lost child on their birthday?  Last year I thought that surrounding myself with her loved ones and doing something to honor her was the perfect answer.  We hosted a blood drive complete with balloons and birthday cake.  Give a life in honor of her life.  What a great idea, right?  But looking at a cake that was decorated with “Happy Birthday Isabella” written on it in purple icing and having to hear everyone sing as someone blew out her candles made me just sick.  I remember thinking this was the worst way for me to spend my day.  I wanted to just crawl in my bed and pull the covers over my head and mourn her in my own way.  Instead I had to give hugs and wear a smile as I sipped my spiked coffee that somehow stopped my hands from shaking.  By the end of the day I just disappeared…exhausted as I crawled into her bed to sob.

As this next year approaches I have learned to protect my heart more.  We booked a local art studio that she loved and decided to offer painting sessions for kids to raise money for Neuroblastoma research.  Bright colored paintings and purple cupcakes.  No candles.  No singing.  Perhaps not even my face at the event.  In fact, my husband and I would like for the day to pass quickly.  But she has a brother and sister who are already asking what we are going to do to celebrate her birthday.  So even in private I can’t escape it.

The only people I can try to please on this day would be the people that still trip over her shoes in our home.  My two other children will always know this day and we will try to teach them about remembering her how she would want to be remembered.  We will go to one of her favorite places to eat and pick out pretty flowers to bring to her site.  I will wrestle with the feelings in my head all day of how this all came to be.  How I felt her kick in my belly and now can only place my hand on an inscription of her name.

What I find after losing a child is that things I do in her honor are so very private to me.  I’m always amazed at the advice that is given around what we do to remember her.  Even when you work hard year round on a foundation in her name that gives back to things that were important to her such as Neuroblastoma research, the Make a Wish Foundation and the Ronald McDonald House, you still hear whispers of what people think is right or wrong.  I can never understand the thought of this after all we have been through as a family.

If it is one thing that should be done without criticism it should be how a family decides to honor a lost child; what we raise money for, how often we visit her remains, how public we want to be on special days, etc.  I can’t begin to imagine having opinions on how others grieve, but oddly our society has an opinion about everything.

These opinions make days like her birthday feel stolen from me.  While I know she may have meant a ton to so many people, I feel selfish and think her birthday is my day with her.  For just one day I try to quiet the voices in my head of what others think is right and wrong and allow myself to relive every memory of her in my own private way.  I like to think of how her birthday would be in my perfect world.  The dress she would wear, the nail color we would pick out together, and even the new doll outfits and accessories we would select for the American Girl doll she loved at the time.

When a loved one passes away, all the things that once brought you joy such as birthdays, Christmas mornings and seeing fireworks… they all leave you with a bitter taste in your mouth.  As hard as you try to smile, the heartbreak inside you boils up like a volcano.  It’s hard to learn how to manage your pain on these days because you want to show you are strong and you want to start to live life in a positive way.  I know in time they will be less painful.

So this year there will be no singing and no gifts to open.  My heart only asks for one thing.  The only gift I want is to close my eyes and have the most vivid dream of her that I can.  It’s a dream where she wears a birthday hat and a smile and blows out flickering candles as a happy and healthy little girl and runs into my arms.  The reality is there is no way to be happy celebrating a birthday without her.  Unfortunately, I have many years ahead of me to figure out how to celebrate in a way that allows her into my heart without breaking it time and time again.

Entitlement

Entitlement.

en·ti·tle·ment
enˈtītlmənt/
noun
  1. 1.
    the fact of having a right to something.
    “full entitlement to fees and maintenance should be offered”
    synonyms: rightprerogativeclaim; More

     

    I love that you can put a word into google and it brings back the definition.  Technology.

    Entitlement is a word I have been struggling with lately.  This word has brought me freedom at times and then pain times.  It’s the thorn in my side lately.  It is the root of where the majority of my problems are these days.  When you lose something like a child in your life, I think entitlement is something that comes along with it.  This is what I went through and now that it’s over, I’m entitled to something.  That entitlement can be a wide range of things from feeling the “fact of have a right” to a better life, better friends, better marriage, better kids.  Whatever it may be.

    It has been my excuse for awhile now.  I act the way I do or say something a certain way because I feel like I entitled to do it because of her.  I feel like I’m looking at my life and it’s a lifetime movie of textbook things that happen when someone loses a child.  Why am I so cliche?  Why can’t I pave my own path and not do all the things that people traditionally do?

    My Mom tells me that there are so many things in my life that I can’t change that are awful so I’m trying to get rid of everything in my life that I can change because that will make my life somehow different.  It will give me that life I feel I’m entitled to.   I can see that.  I see myself pushing people away or completely cutting them out because I’m somehow entitled to an easier life and having them in it is too hard.  What bullshit that is, right?

    How long can things I do or say be written off because of my situation?  I feel like that time is ending.  My days of entitlement are ending.  Although other people will probably say that what happened will effect me forever so these things thoughts are maybe just the new me?  Wow.  I hope that’s not the case.  I watch myself from a far and think, who is that person?  That person is drowning in entitlement.

    I think I’m just going through time and space trying to find out what I look like now. Who am I?  I was once a pretty cool person who did the right things and was concerned for other’s feelings.  Now I feel words like entitlement or selfish or disconnected coming through.  Can’t have that.

    I think there is a fine line between having your past mold you and having your past take over your life.  It needs to start molding me.  I see it starting to through my want to write again.  It’s hard to not write about her because when I open up a blank document, it the first thing that my hands are wanting to do.  It’s their routine.  I just feel like she is so good at pulling me.  But the two year mark is approaching and I should be going another direction.  Then comes the guilt of wanting to forget her.  The back and forth on it is exhausting.  I’ve completely stopped visiting her because I feel like I’m someone she wouldn’t recognize so I just stop going. I’m sure she wouldn’t judge me.  I’m just trying to figure things out.  I’m trying to find Erin without Isabella.  But instead maybe I should be Erin with Isabella, just a quieter Isabella and a little less entitlement about her.

    Ramble ramble ramble.. I need to quit this Lifetime movie.  I know how some of them end.  But some end with some woman looking out a window, just smiling at the sky.  Thinking of what all she went through and how she came out on the other end.  Maybe that’s my movie?

Thankful.. that’s right. I’m thankful.

The past 24 hours have been quite the soul-searching journey for me.  As we roll into the holiday season, she feels so close yet so far away from me.  As I get out our Thanksgiving decorations, I come across turkey place cards that she helped me with.  Her little handwriting on the cards that tell Mommy and Daddy where to sit.  She never really was a big Thanksgiving kid.  But let’s be honest.. what child is?  They are all more excited about the family coming in and no school.  We all force them to “try” the turkey as they fill up on mashed potatoes and pie.  They play board games with their Grandparents (because I really hate to play board games), they get books read and rocked to sleep on top of a grandpa.  I love this holiday because it’s low-key.  It also means that tomorrow I’m officially permitted to listen to Christmas music without hearing Stuart bitch at me about disrespecting the turkey.

But the theme of this day is being thankful.  When you are a parent who has lost a child, you think that at times there is very little to be thankful for.  And maybe those things become clearer to you as more time passes.  Let me start by saying as an overall theme that there is nothing I want more in this world them to have her cuddled in bed with me.  Healthy.  But I know that if she were still here, that would not be the case.  She would be curled up on the couch, full of medicine and probably with a bucket close by.  It’s hard to say out loud that I’m ever thankful she is not with us.  But I shutter at what she would be like today if she were still here.

For the majority of her life, Stuart and I were always able to honestly say that she had so many amazing things in her life that outweighed the bad.  Once that scale started to tip, it became painful obvious to us that her time was ending.  And the scale tips quickly.   They go from occasional hospital stays or transfusions to you wanting them to be admitted so that they are comfortable.  One day you wake up and one side of the scale is on the ground like a seesaw with only one person on it.  That is what happened to us.

But through her passing, the clouds have parted and the sun has started to shine a bit. I’m able to see a little more clearly on what her passing and when she passed has provided for us.  So with that, I give you my Letterman top 10 list of what I’m thankful for through her leaving us.

1. Grant and Sophia.  This morning I woke to find them snuggling in Grant’s bed under the covers together.  “This used to be me and Isabella”, Grant tells us with a smile.  The bond that gets created by the brother and sister left behind is amazing.

2. Jackson.  My brother had a son a little over a month before Isabella died.  Every new baby should be the focus of family and I’m happy her sickness didn’t cloud his attention.

3. My Mom’s marriage to my Stepdad Bob.  This was on hold forever because of cancer.  I’m happy to report my Mom is now legally, Connie Stewart and I legally have a new stepdad.

4. Stuart finding himself.  He is no longer responsible for saving her.  He can now be a husband and father to the rest of us.  It has also removed the weight on his shoulders.  He can become who he is meant to be without the need of a ridiculous paycheck and maxed out insurance.

5. My nieces.  I am finally able to get to know them and actually spend time with them. They have developed into preteens who never got the attention they deserved from most of us.  They are developing these amazing talents and personalities that are so different from anyone under my roof.  It’s been a learning experience to me on connecting with them when I don’t have much in common with them.  I’m getting better but hoping to improve every day.

6. My dad.  My dad has had a rough year.  I’m not sure I could have given him the support he needed and deserved with her still here.  We are still developing our relationship but it has taken us 35 years to say “I love you” when we hang up the phone.  That phrase is here to stay and I love it.

7. Visitors.  All family visitors can now come to my house and enjoy themselves and not feel like they need to pick up the slack with my laundry, or my unorganized Tupperware and pantry.  They can come with a book and read by the fire, they can have a glass of wine and not feel like they are talking us off ledges.

8. My friends.  I’m extremely thankful to all of my friends who are still my friends.  I am mostly thankful to the ones who still find my friendship extremely valuable to their lives even without Isabella in it.  So many friendships in my life were held together because of Isabella’s sickness.  The ones that have held without her glue are like gold to me.  The ones who only want me in their lives with a sick child are not real friends.  This has become very clear to me as time passes.

9. ISF.  I’m so thankful for everything around this.  Mainly to the people who devote their time and energy to this cause and expect nothing in return.  All the countless people who do things in her memory every day and support us at the race, blood drives, fundraising events etc..  We are really doing something amazing with ISF and it is one of the things I am most proud of in my life.

10. Last but not least… Me.  That’s right.. I’m thankful for me.  I’m thankful that my ship did not sink.  I’m thankful that I find things in my life that are worth getting out of bed for.  I’m thankful that I have stopped feeling sorry for myself and that I look at Isabella as a blessing and no longer a curse on my life.  I have found myself a bit and I’m proud that I have not allowed a death to pull out the worst parts of myself.  Taking care of myself is critical in my survival of this situation and I have made myself a priority.  I’m healthy, happy and thankful for what I still have in this life.

I could probably list 100 things I’m thankful for.. but these are the ones fresh on my mind.  I’m not happy about celebrating another Thanksgiving without her… and never will be.  But I can be thankful for a lot..  It takes time to discover it and I’m finding out more and more each day.  Thankful.. a word that I thought would be out of my life forever – but here I am saying it with a smile.

Gobble.

My look back..

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Quiet time can do wonders for motivation.  My days are not filled minute by minute with ISF, race details or meetings so I’m enjoying the quiet.  I think more and more about writing every day and have set a goal for myself to eliminate anything that is preventing me from starting the process.  The one hurdle in front of me is revisiting the past.  It’s one thing I try hard not to do every day because I need to keep one foot in front of the other.  But I knew in order to move forward, I would need to look back.

3 volumes of her

3 volumes of her

So here it is.. my three volume Caringbridge hard bound book series.  When it first arrived, I was stunned.  Did I really write 3 textbooks?  No.. I didn’t.  I wrote one textbook.  The two remaining textbooks were pictures, guestbook entries, etc..  Thank goodness.  Otherwise it felt like a Hunger Games series or something.  I kept telling myself that I needed to read it.  But, I didn’t want to read it casually here and there.  I wanted to devote the time that it needed, that meant quiet time.  No kids, no TV, no nothing.  But finding that time can be hard.  So it became the hurdle that was preventing me from my larger goal.  Until about a week ago…

Enough was enough.. I started plugging through.

The beginning was an easy read.  Keep in mind that I was a business/tech major in college.  My sister was the art major who took creative writing workshops over the summer.  (What a dork.)  The first year was more of a diary of sorts and shout-outs.  We did this today, she felt like this.. so and so came to visit.  Blah blah blah..  ZZZzzzzzz..  It was just a way of me not having to update everyone at Target when I was buying diapers.

Some of it was like watching a movie that I had seen before.  I knew the outcome before the scene even happened.  There were parts when I had to read with one eye closed because I knew what was leering just around the corner.  Come on Erin.. those headaches were causing so much pain that they were making her throw up!  I would say these things to myself.  But my character in the book was oblivious to the symptoms or the manhole she was about to fall in… otherwise known as brain tumors.

I read how Isabella was so innocent in the beginning, taking it all in stride.  None of it really bothered her.  I actually think that she enjoyed it at some points.  All the snuggles and alone time that she received.  All the gifts and visitors and attention.  What 3 year old doesn’t crave this?  We moved our entire family up to Manhattan and lived a new and exciting life for periods of time! Brain surgeries and radiation sure, but sprinkled in it were weeks upon weeks of sharing a bed with Mommy and Daddy and all the pasta she could eat.  Not so bad if you ask me.

We had quiet times that we thought were quiet.. but in fact they were not.  They were just bridges between relapses.  We would think that our lives were becoming normal but we lived in a constant state of fear every day.  Everything in our life revolved around 3 months of scans that would be like rollercoasters of emotion.  A clean scan would allow 2-3 weeks of calm but then the coaster would start to ride up the track as she complained of a headache here, a leg pain there..  all leading you up to the top of the hill when you are about to explode from anxiety, heartache, pain and nerves.  CLEAN SCANS!!  Your coaster would roll down the hill.

We jinxed ourselves so many times.  How stupid of us to release balloons at the end of her brain relapse treatment only to relapse 3 months later.  Making a big deal about saying goodbye to different treatments.. Silly for us to think that we would never see them again.  6 months later we are back on the calendar for another dose of a treatment we told her was her last.  Just a series of lies we told ourselves.. and told her.

It’s funny because people tell us all the time how amazing we were, how inspirational as parents, yada yada yada.. But after 16 months I see the clouds parting and read what you all read.  At one point I built up confidence and began leading instead of following.  We discussed treatment options instead of received them.  We took breaks when we needed them because we knew it would make her stronger even if the doctors disagreed.  At one point she received a chemo called “kitchen sink”, meaning they threw everything at her.  It just about killed her.  But sure enough, she recovered from it.  They wanted to hit her again but we said to wait.. she was going to Disney World first.  And we did.  We freaking took her to Disney World in between kitchen sink chemo.  A week prior, she couldn’t get out of bed and she wasn’t eating.  But 7 days later she is riding “It’s a Small World” and swimming at the pool.  We were maniacs!

I got smarter and began to know my daughter.  I knew how her body would recover, how her counts were going to be before they even pulled them.  I knew what meds to give her and pushed out anyone that didn’t know what they were doing.  The squeaky wheel got the grease.  I assumed my picture was hanging up somewhere in the doctor’s office like someone who wrote a bad check.  “Watch out for this no it all.. “.

Isabella was developing into a little girl beside me.  She knew that I was on her team and Mom would do anything and everything to get her out of the hospital.  But in this process she began to lose control of things and began to rebel.  It was such a hard time for me because I felt like I was fighting the fight for her every day and she was fighting me back.  It was like knives in my heart at times.  I know she was just looking for something to hold on to as well but it didn’t make the pain any easier.  At times I felt like I hated her because she didn’t get what her cancer was doing to me too – or maybe just didn’t care.

She’s clean and then she would relapse.  She’s clean again.. and then she would relapse.  This cycle continued for years.  The ups and downs of putting her through things – thinking that this would be the thing that saved her.  But then receiving the news and having to tell her as her lip quivered that she was sick yet again after all she had been through and her beautiful hair that she treasured would once again fall to the ground.

It was 5 years of giving her the most amazing gifts in the world and then taking them away again.  The cruelest life at times for all of us.  I remember her freaking out once about getting her line and having to tell her that if this line didn’t go in, she would not get the medicine she needed and she would die.  Can you imagine that?  Sure, we tell our kids to wear seatbelts because they could save their lives if they were in an accident but this is different.  Holding her arms tight to her sides and looking her right in her eyes as tears fell down my face.  YOU WILL DIE IF YOU DON’T DO THIS.  Shittiest thing I have ever had to say in my life.

I read a point in the book when my writing starts to change.  It’s not retelling a day’s events.  It becomes writing out of fear.  I think I started to know how the story was going to end.  I lost confidence in the drugs and knew that in a certain number of months or years.. all I would have left of my daughter was this book.  I began to dump my dreams and fears into it because I didn’t know what else to do.  But as the author I can read through the text.  I tried to write as if no one was reading but I knew.. Some of the things I wrote were just too PC.  People felt like I was pouring my heart out to them but I was holding back so much it’s disgusting.  I’m not sure what people would of done if I wrote all my true feelings.  That’s still hard to do at times for me out of fear.  It is the one thing I have to learn if I try to accomplish this goal of mine.  Write and not care at all.  Write all the truth.

I accomplished this goal on Caringbridge only in the last month.  I always had a small percentage in my mind that thought she could pull through.  That she would be the miracle that everyone told me was going to be.  She kept beating the odds so it was still a dream that could come true.  But in May of 2012, the cancer was up and down her spine.. Watching her body give up.  That small percentage went away.  She was ready and I was ready.  Stuart and I question ourselves all the time if we were all just got too tired in the end and all stop fighting together.  Maybe it was the science; maybe it was wrong decisions… who knows.  But in May – we cut the cord and watched her die.

I read the entire journal without crying until that Memorial Day trip.  She stopped getting out of bed; she started to have vision issues.  The cancer was all through her just eating her alive.  I wish so badly that I could go back and shake myself that last month because I knew it was happening but didn’t REALLY know.  I would watch her lay in bed and reach out to things that weren’t there, talk in conversation that didn’t make sense..  she was dying right in front of me and I’m not sure if even then I understood it.

How in God’s name I was ever able to write in the journal about what was happening to her.  Even up until she died I was still thanking people for meals or trying to get people to donate to research.  WTF?  Instead I wish I were documenting her every breath so I can watch the horrible movie over and over and see her so clearly.  I thank GOD every day for the journal I wrote on Thursday, July 5th… one of my last.  That entry is all real and I had no fear of writing that.  It was raw and honest and I sob until I am shaking when I read that.  I can see it all as if it were happening right again in front of me.  And that is what writing should be.

After I composed myself, I went to pick up Sophia at Calvary.  I got out of the car and walked up to her name plate.  I put my hands against it and pushed as hard as I could for some reason.  I don’t know what I was doing.  Trying to move the monument?  Trying to bust through her plate to her ashes?  Not sure.  All I know is that I hate that all I have left is that stupid book.  A book I will cherish forever.

Catching apples

I love October.  When it seems your entire life revolves around the month of September, the date of October 1st feels like heaven.  Sure, there are lots of loose ends to tie up from our big event, but nothing that keeps me up at night.  I am oddly finding times of pure silence or relaxation – which is great right?  Right?

When you live a life for years running at full steam, the times of quiet can give an uneasy feeling.  I am finding things to do of course.  Lots of things I WISH I could have done are getting accomplished.  I have thankfully found a new workout routine that seems to be getting me out of bed… and I’m addicted to it.  I get to volunteer at my kid’s schools and get to know who their teachers are and who they run with on the playground.  Time with friends and family are finding conversations not centered around marketing ideas, PR opportunities, race figures.  Hell, I can even devote time to my (rightfully) attention starved husband.  This is all good.  But I find myself wondering, is this all there is to me?

Over the years of caring for a child you tend to feel that who you are becomes a bit lost. Before the big “C”, I was a project manager at LendingTree.com and actually really enjoyed my job.  Sure, all jobs have something that drives you crazy, but I felt like I was learning and providing value to something that was cool and fun.  My opinion mattered on subjects outside of soccer sign-ups and birthday party themes.  I actually felt smart.  But when things in your life suddenly change and you become a mom or a “Homemaker” (worst job title in history), you start to lose pieces of yourself and feel well, let’s face it.. Dumb.

I ask myself who I am now that these life changing events are behind me.  Taking a good look at myself is hard.  It seems like everything I am is centered around someone else.  I am a mother.  I am a wife.  I am a friend.  I am a daughter.  I find myself looking at a blank piece of paper and struggling to write something down that is who I am.  I can easily blame myself for this because I have built myself up as “Isabella’s Mommy”.  A title I take very seriously.. but once again centered around someone.

Sometimes I wonder if it is because I don’t have a job?  I know, I know.. I am President of the Isabella Santos Foundation.  Which at times is a REALLY COOL JOB.  It’s a job I am very proud of, but it’s also a job that at times can be very unhealthy for me.  My therapist says that after the race is over that I need to find out who I am.  Hmmm.. that sounds like it might be fun.  But unfortunately life takes over and whatever I once spent my hours doing is now filled with other stuff that isn’t really about me either.

Is that what being a Mother is all about?  Giving up yourself for others?  Not really being anyone when you are standing alone?

All people tell me is that I should take time for myself.  Make myself the number one priority for a bit.  Once I’m above water, then and only then will I be better for others.  But life isn’t that way.  Life is about trying to shove 15 pounds of shit in a 10 pound bag.  We are trying to do everything we can during the hours we have each day and very rarely is that spent on really improving ourselves.

I feel like when I take a step back and look at what I’m doing its constantly trying to achieve some work/life balance.  Work/life balance is an urban myth if you ask me.  I find that everything in my life is an apple that is ready to fall of the tree.  The house is in shambles, try to get things in order here.  But then when you do that, your son starts having issues because he’s not getting the attention he needs.  So you try to spend quality time with him to reel him in and while you are doing that, your daughter clogs the bathroom toilet.  While you are unclogging it, your husband is calling to chat but you can’t grab the phone.  You get distracted answering emails and checking in with your mom and then it’s off to after-school activities and a rushed dinner and bath before  the kids lay down for the night.  Your husband comes home and asks why you didn’t call him back and just wants to know about your day.  When really your day was just a series of catching apples before they fell to the ground.  He then wants your attention as you clean up the house for the third time today and then you fall asleep at 9:30.   Alarm jolts you up for the bus at 6:15 am.  Does this sound like anyone else’s day?

Now I’m not saying I’m constantly on the run for others.  Did I get to have a glass of wine last night with a girlfriend?  Yes.  Did I watch an episode of Orange is the New Black?  Yes.  Will I get a pedicure this week?  Damn right.  Not sure if that is making me who I am.. maybe just giving me nice looking toes.

I keep telling myself that maybe it’s time for me to go back to work.  Maybe I need something that forces me to stop doing all this nonsense or apple catching throughout the day.  Ideally, I would love to write and actually get paid for it.  But that too seems like an urban myth.  It seems that it is all a game of who you know.. who has time for that?  I know, write the book right?  Does anyone realize what a daunting task that is?  The fear of failing on the book is preventing me from starting.  How silly.  My fear is that in the quest to find myself I will go out and get some part-time job at Tory Burch or something… someone stop me.

So in closing.. how does one find themselves?  How do they bring meaning to their life when it seems so empty and lost?  How do you figure out how to write characteristics of yourself on a piece of paper without them being centered on others?  Seems like all my questions are revolving around urban myths, the fear of failing and Tory Burch.  And that’s never a good thing.

Awareness.. what a bullshit word.

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a·ware·ness
noun
 1.knowledge or perception of a situation or fact.
  1. “we need to raise public awareness of the issue”

With tomorrow being the start of Childhood Cancer Awareness month, I sit here on the eve of September 1st eating my dinner with my family.  I am chatting with my husband Stuart about how I should write something for the month of awareness.  Then I say, “Awareness.  What a bullshit word.  That word is the problem.”  And just like that, my   blog post comes to you today.

I’m sure the word awareness comes from back in the day when no one spoke of cancer. The “C” word as it was called.  People died quietly.  Very rarely was a child with cancer was even seen.  Probably because there were no real treatments for them so they died so quickly.  Even 20 years ago they were barely saving one child who was diagnosed with neuroblastoma, so I was told at our initial MSKCC consultation.  Hell, we were told that Isabella wouldn’t have survived her brain relapse if it would have been just three years earlier.  So there you would have had it.  Isabella, dead 9 months after her initial diagnosis.  There wouldn’t even been enough time for me to get her story out to you.  So awareness month was a good thing back then.. hey, meet this little 3-year-old with cancer.. Nope wait.. She’s already gone.

But now times are changing.  These kids are fighting harder and longer.  Their stories are getting out there because the chemo drugs are not curing kids, they are extending their lives.  People ARE aware of them.  The awareness of pediatric cancer is out there.  But now we are getting stalled because the movement is not moving.

Here is what a typical pediatric cancer looks like this month.  You “like” a couple of Facebook posts about childhood cancer or maybe even “share” one.  You think about signing up for a childhood cancer 5k but your life is busy so you don’t get around to it.  You take your kids to soccer practice and do homework and have drinks with girlfriends and go to work and church and read People magazine to catch up on your favorite celebrities and how short Lindsey Lohan’s shorts were in NYC the other day.. Oh no she didn’t you say.  And then you are running errands in late September and start noticing the city turning pink and think, “I need to schedule that mammogram.”.

Then it is October 1st.

Did you know that the 2012 cost of government elections was more than 6.2 billion dollars.  Did you know that in 2012 the cost to RE-ELECT the SAME president was estimated to be 2.6 billion dollars.  That is something you should be aware of.  Because in 2012, we spent less that 10% of that 2 billion dollars funding childhood cancer research or less that 5% of the 6 billion dollars cost of 2012 government elections.  And just 4% of the total cancer funding goes to pediatric cancer.  Also scary to think about, 60% of all funding for drug development for adult cancers comes from pharmaceutical companies.  What is the percentage of funding for drug development from pharmaceutical companies for childhood cancer research?  Almost zero.  Why?  Because children’s cancer drugs aren’t profitable.  Ouch.

There is some awareness for ya!

So back to my issue with this awareness word.  The movement I want to start is this.. Let’s maybe change what your September looks like.  Print off a picture of my daughter.  Tape it to the back of your doors in your house.  That’s right, the front door and the back door.  Every time you walk out the door, take a look at her.  She died in my bed on a Thursday morning around 9:30 while her little brother was at camp at the YMCA.  She was 7 years old.  She died about 80 years early.  She also died because she ran out of treatment options.  She died because her cancer has very little funding and her drugs aren’t profitable.

Look at her picture when you walk out the door for your awareness.  “Awareness”.  Check.  But then when you get in your car to take the kids to school, go to work, go to the gym..  think about something you can do that is ACTION.  Forget awareness.   September is childhood cancer “ACTION” month.  Do something that day that is action to save a child’s life.  Sign up for race, make a donation, research what is really going on, ask your friends to help, talk about it, have a lemonade stand, write your congressmen, help a family who has a child with cancer.  Can’t think of something to do for 30 days?  Email me, I’ll help you with your list.

Cancer is an epidemic in this country and I’m confused as to why people aren’t freaking out more than they are.  Probably because they don’t have it.. yet.  Or maybe because we are all so “Aware” of cancer but aren’t taking action against it.  Maybe we are all waiting for the future of cancer.  They show it in the new Matt Damon movie as a scan on your body that just “SNAP”, get’s rid of it.  Truth is, that is not even a remote possibility in your life time.

Every day I’m aware.  I’m aware that she’s no longer with me.  I’m aware that my 3 year old daughter, Sophia is inside coloring a picture for her right now.  I’m aware that Isabella should be in the third grade this year.  I’m aware that my husband lives in fear that he will never be able to love his children as much as he loved her.  I’m aware that  my 6 year old, Grant has nightmares about her.  I’m aware that every day for the rest of my life I’m going to feel like there is something missing.  I’m aware of a lot.  So the word awareness works really well for me in my life.  Describe my life in one word actually and it’s probably awareness.

So let’s not make this month about just liking a Facebook e-card about cancer or reading  a family’s caringbridge entry and then walking away.  Let’s all admit that awareness is just a legacy bullshit word and lets all commit to making this month about action.  Action saves lives, awareness does not.

Give to neuroblastoma research.  http://www.firstgiving.com/fundraiser/isabellasantos/isf-2013-5k-for-for-kids-cancer

Here is your awareness picture

Here is your awareness picture

August.. the smell of relapse

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With Sophia heading off to the first day of preschool I find myself feeling so anxious these days.  Of course the race is 30 days away and it’s on my mind but there seems to be a familiar pit in my stomach that I can’t shake.  This past week or two I have had ups and downs of sickness, extreme fatigue, loss of energy and overall a horrible cloud of moodiness that has parked over the top of me.  Why is my body breaking down so much?  Then today it hit me as Grant and I were walking Sophia into school.  While everyone else is feeling the rush or back to school and the smell of freshly sharpened pencils, all I know is the smell of relapse.

It seemed like clockwork for us that every August we would be due for scans.  We would swear to ourselves (aka lie) that this year was going to be different.  She wouldn’t miss school, we would be on top of things in her classroom, we would be a normal family.

Another first day, another relapse.  (Neck)

Another first day, another relapse. (Neck)

And then a call would come that would tell us that her tests came back positive or the lump on the side of her neck was not in fact a swollen lymph node but in fact a tumor.

First days of schools were missed, supplies not purchased, teachers not met.. instead we would be having sit down conversations about our next fork in the road.  How do we keep her alive?  We would spend the next month traveling about and spending nights in the hospital while everyone else got to know the school routine and meet new friends.

So now here I am.. it’s August and there is no relapsing.  School supplies?  Check.  First day of school?  Check.  Meeting teachers?  Check.  Then why can’t I shake that relapse pit in my stomach?

I decide in honor of the first day of school, Grant and I will head over to visit Isabella.  I have gotten away from my weekly visits over the summer due to crazy schedules and the kids.  I was ready to come back to her because she always grounded me.  Maybe a visit with her with cure the pit.

I assumed Grant would stay in the car and watch Kung Fu Panda 2 so that I could have a minute to catch up with her.  The predictable kid I thought he was jumps right out of the car and grabs my hand to visit.  We sit down together on the bench as I inventory the gifts laid before her.  I can always tell Miss Chrissy’s gifts and a new pin wheel from her BFF Soleil.  Soleil was her best friend that she met on her first day of preschool at Calvary.  She is no doubt getting ready for 3rd grade this year which seems crazy to me.    My eyes fill with tears as I try to just look straight ahead.  I then of course feel Grant’s hand on my back like a shock through my body.  Sometimes in life things happen and I feel like it is Isabella.  This was one of those times.  A tiny hand on my back telling me that everything was okay.  I turn to smile at him and see his eyes are filled with tears too.

“Feels just like she was here yesterday doesn’t it buddy?”

“Yep.”

I know he has been thinking of her lately because he has started to play his little recording he has of her wishing him good night.  Twice this week he called Sophia, Isabella too which means she is on his brain.

Then comes all the questions.

“How do they put on these bodies in here?”
“How did they put her in there?”
“Who put her in there?”
“I think I can see here in there”, as he looks through the holes.

At what point to you share with a 6-year-old the process of cremation?  I decide to tread lightly here and tell him that Daddy and I decided to make her body into ashes through magic and put in a pretty box instead of putting her into a casket in the ground.  We did this so that she could be above ground and listen to the birds easier and hear Sophia play on the playground behind us.

The only thing he heard was ashes.  Which I then had to describe further as something that looks like dust.  Which made it seem worse.

“So can we open the box and look at her?”
“No buddy.  It would just be ashes.  You wouldn’t be able to see her.”
“How do they make her ashes?” – MY DREADED QUESTION
“Well, they do something special to your body that turns it into ashes.  But her body was not really her anymore honey.  She already went up to heaven.”
“So she really doesn’t know that you did that to her.”
“Right.”  (ugh…)
“Well don’t do that to me.  I want to be in the ground.”
“Ok.  You can go in the ground.  I just thought she would like to be up here so she can hear her wind chime and feel the breeze.  And one day when I die, I can go next to her box so we can be together down here and together in heaven.”

At this point tears are falling from his eyes and I can’t figure out if I should have locked him in the car or if this is just how people talk to their kids about this stuff.

Long pause.

“Well, maybe put me in a box too so I can be next to you.”
“Sounds good to me.  Who wants to be in the ground with bugs anyway?”
“Mom.  That things is shut so no bugs can get in.”
“How do you know?”
“How do YOU know?”, he tell me.
“Fair enough.  None of this really matters to Isabella anyway because she is happy up in heaven.”
“She is always happy?”
“Yep.  And she can be anything she wants to be.  She can have long red hair, or be a Mommy or play with kittens all day.  Just happy all the time.”
“When I go to heaven I want to have green hair and drive a car.”
“Sounds good to me.  I just want to be with you guys all the time when I’m there.”

We sit there in silence for a bit and he tells me that he wants to bring something out for Isabella.  Something that she can hear because she is above ground.  He tells me that she always liked the jewelry box next to her bed that when it opened had a dancing ballerina in it.  He wants to bring that our for her.

“And a picture of her and I together.”  He tells me with tears.  “I think I will come out here as I get older too, Mommy”.
“I think she would like that.” I tell him.

I wish I could say that the visit eased the pit in my stomach.  Or unfortunately maybe now it has given Grant a pit in his.  I think that sometimes these visits to her solve problems or maybe they just answer questions.  Maybe it was just something Grant needed to reconnect with her.  I just like feeling her hand on my back every once in a while.  Telling me that it’s okay.. there is no longer the smell of relapse in the air.

Ib and Grant

Ib and Grant

The business of being me

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I felt like all my life I really was who I am.  It wasn’t until Isabella was diagnosed that I felt like I started to become someone who I wasn’t the real me.  I was forced to educate myself on medical terms, clean up vomit without flinching, give shots to screaming children, etc..  All of these things felt so foreign to me but they came to be part of who I am today.  Sickness or trauma no longer rattles me to the core.  The once business/computer major had turned into someone who felt like she was only a couple of credits shy of being a registered nurse.  Put me on the enemy lines or have me as your bedside nurse as you cross over to the other side and it will not be a decision you regret.

The one piece of this journey that I still have trouble adopting is the business of being me.  There are things that have become part of my daily life that just put knots in my stomach.  Public speaking for instance.  It is what experts say is the most common fear.  Not only are you speaking in public about a new exciting product or a funny story that happened to you..  No, we want to you come into a room of strangers and tell them what it’s like to have a child with cancer.  We are going to stick her next to you up on a stage at Time Warner Cable Arena while she hangs on your leg and you are going to tell us all what it’s like to be you.  Tells us your fears about how she might one day die or better yet, now that she has died.. tell us about that too.  Tell us about how you think she died because people do so little to help her.  Tell us all that sometimes you point your finger at us and sometimes, okay.. all the time, blame us for her death because people don’t give this disease enough attention.  Tell us that this is a national epidemic and we are all blind to it.  Then after all that, deliver the close and ask us to donate.

Imagine having to do this.

I always say that I’m going to surround myself with people who are more comfortable speaking on my behalf.  Then here comes the request for the interview and everyone takes 3 steps back.  And not only does no one around me want to speak, but the person organizing it really doesn’t want anyone to speak but me anyway.  There is no avoiding it.  I’m the one.

With the race just 30 days away, I know the requests for TV or radio interviews are going to start coming in.  It’s peak season and I’m going to have to skip from place to place and somehow tell this awful story.  I wish I felt energy doing it, like I’m doing it all in her honor but I honestly want to crawl in a hole during it and I lose about 10 pounds in anxiety sweat.

I must do it well because we are still growing.  I know the effectiveness I can have because we can ask and ask someone for a donation for the silent auction but then I email them directly from me as her Mother and they give.  Which leads me to the next piece I hate about the business of being me.  The give.

You know when your school wants your kids to sell something to help raise funds for their school and instead of bothering your friends and neighbors, you write a check for $40 so you don’t have to ask anyone.  I wish I could write the $40 candy bar check all the time.  One of the WORST things in the world is asking people for money.  You hate it, I hate it.  I dread creating my firstgiving page each year because I know that I have to send it out to my contacts.  I imagine they are opening the email and saying, “Here’s Erin’s yearly email!”.  Not only to I ask you to give, I ask you to ask your friends, oh and come to our race and give to the silent auction and like our facebook page and follow us on twitter, donate blood.. the list goes on and on.

I see people when I’m in Target and I know they are thinking, “Crap.  There’s Erin.  She is going to ask me if I’m coming to the race.”  And you are right, I’m going to.  And when someone gives me some crappy excuse about how they have a 11:00 soccer game or they have people visiting them that weekend, know that I’m walking away and keeping score.  I hate that I do it.  But I do.  I got your number.  I am polite and not pushy but then I use obscenities under my breath when I walk away.  But, I also take private note of people who are there year after year without me begging.  I know who you are out there.  And I love you.  ;)

I guess because after raising Isabella who would make me stop at every lemonade stand because, “it’s just what you do Mommy.”.  I find that I’ll give to just about anything.  Sure, there are things out there that don’t get me hot and bothered like buying cows for villages in Africa who need them or sending a dollar a day to kids with flies on them.  But for me, just about everything else will get me to reach in my purse.  It’s just the right thing to do.  I also feel like we all do shitty things in our life every day and it’s our way of settle the score for all the selfish things we do.  We all need good karma out there, right?

I guess the point of this whole ramble session is to let everyone know that every time I have to ask you to donate, or ask you to give blood or ask you to come to our 5k or create a Firstgiving page, that a large piece of me is wanting to hide while I ask you.  NO ONE likes to ask or put themselves and their passed away daughter out there on display.  I do it because I think it’s the right thing to do.  And no matter how uncomfortable it makes me, or makes you – I’ll still continue to do it.

So when you get the email with the ask, know that I have to ask Grant to come in and press send on my email because otherwise I wouldn’t have the strength to send it.  Then for weeks I am worried about running into you at Target too.

I hope that I’ll get more comfortable with it.  Just know that once October 1st comes around – I get to crawl in my hole for 6 months and just return the favors I owe.  But for now I will do it.  It’s just the business of being me.

Here’s the ask.. 

Give to NB research. Donate to my Firstgiving page by clicking here.
Register for the 5K for kids cancer by clicking here.

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The sessions part 2… “Calm” and Monopoly.

After my last session I really thought that maybe the whole counseling thing was just not for me.  Just maybe I selfishly wanted to keep going back to my tranny just for the posts that would come after or so that I could start sentences with, “Well, my tranny says.. yada yada yada”.  But I felt like “Marcus” meant no harm so I should let her/him get back to her real client focus.  I’m sure she provides them lots of emotional support.  I’m very comfortable in my own sexual skin so I went back to the drawing board.

I decided that out-of-network counseling was the best for me.  Screw jobs and their suggested lists of who is best for you to save a dime.  My time was too valuable for that nonsense.  I actually chatted up a lady here in Ballanytne a couple of times during Isabella’s sickness and some various marital hills.  She knew me.  She knew the Isabella story.  She knew Stuart.  So I wasn’t going in starting from scratch.  And while she didn’t serve mints in her waiting room (that I could find), the waiting room had nice clean chairs, secretaries, wi-fi, HGTV on a flat screen and no white cats to been seen.

This cat was just sitting in my chair.

Meow.  I miss you!

I had found my home.  I even took note of books on the shelf, “Reinventing yourself”, “Calming the emotional storm”.  I think I could live here.

I love that she already knew Isabella passed away.  Sometimes I wonder if she saw it on TV and then thought, “oh shit..  I know her.”  But then can’t tell her husband why she said, “oh shit” because of doctor/patient confidentiality. Regardless… I’m off track here.  She knew.  Next question, “I’m assuming you and Stuart are separated?”.  Nice.  I kid you not.. every time we hear of a couple getting divorced, Stuart and I look at each other and wonder how we are beating these people in the marriage race?  You all know us, we are dysfunctional as hell and there is a good chance one of us will be on America’s Most Wanted one day.  But today.. we are together.  Seems to surprise everyone I guess?

So I update her on Grant and his roller coaster of grief.  Sophia and how Bella is just missing.  Stuart and the fork of grief he is taking blah blah blah..  So what have I been up to?  Well.. duh, the Foundation.  Hmm…. What are my hobbies and interests now that I should have this free time on my hands?  Who is Erin now that she is no longer the nurse to Isabella?  Who am I now?  Total silence.

Who are you?  I am a walrus.  (Breakfast club reference.)

Who are you? I am a walrus. (Breakfast club reference.)

I could not figure out how to describe myself.  Even now that I’m no longer Isabella’s Mother (though I always will be), I still live like I am.  I’m introduced as her Mother the majority of the time.  I even introduce myself that way to people.  Isabella’s foundation has just taken the place of her in my life.  I felt like I couldn’t tell her much about myself other than being her Mom.  Every quiet second I get is spent dealing with the Foundation, researching, answering emails etc..

She made me think about the times I spend with the kids.  Are they too spent revolving around Isabella?  When I put them in purple, or take Grant with me as my date to the blood center awards banquet, driving them home to Ohio for Isabella’s golf tournament, or visiting Isabella’s site.  My time with them is all wrapped up in Isabella.  It was quite a startling revolution to see that my memories with the kids aren’t spent doing things that are about them.  It’s like cancer took my daughter and it’s still taking my life.

I’ve really set up no boundaries for myself when it comes to the Foundation.  I reach for my phone the minute my eyes open and take my laptop in bed with me at night.  Right now it would be hard to slow the train because our race is the next month so we are running at 100 mph.  (Sign up at www.5kforkidscancer.com  Shameless plug)  But maybe in October I need to start limiting myself from 9-5 during the week.  I need to make it a job, not a life.  Maybe even a part-time job.

I know my therapist was treading lightly and not telling me what I “should” do.  But I honestly think she thought the right move would be to slow the foundation down or maybe quit all together and give myself the life that I deserve.  It’s just not who I am though.  I always hate the cop-out answer of how just being a mom should be enough to have a fulfilling life.  I don’t know many women who are okay with just doing that.  And a big part of the Foundation is trying to help kids down the road.  I honestly believe with every bone in my body that Isabella died because the people or families before us just quit.  Their journey was over and that’s just it.. it’s over.  Because they didn’t think about Isabella, she died.  And I can’t live with quitting and having more kids die because I wanted to pick up hobbies or play monopoly with Grant more.  I know this is wrong.

“That’s quite a lot to put on your shoulders, don’t you think?”, I’m asked.  Yes.  Of course it is.  Do you think I want this big monkey on my back the rest of my life?  No.  I don’t.. but right now I don’t feel like I have any choice.  I know that this isn’t what Isabella would want me to be doing with my life.  Or at least I don’t think it is.  But maybe it IS what she wants me to do?  But is it right to allow this pressure to be with me forever?

I am a psycho.

I am a psycho.

I was even telling her how frustrated I get with Grant because he doesn’t see the importance of giving his birthday gifts to sick children or less privileged children.  He wants them all to himself!!  WTF?  She looked at me like I had 8 legs.  “Erin, he is a normal 6-year-old who doesn’t want to give his gifts away.  That’s normal.”  Oh.  Yeah, maybe it is.  Isabella must have been abnormal.  Interesting.

So my homework was a couple of things.  I first asked her to give me a book to read.  Let me research how to fix this.  Nope.  No book for me.  First homework assignment, download the “calm” app.  Listen to rain or the ocean 30 minutes before bedtime to peel yourself off the walls.  (I have some anxiety issues..)  You can’t fix anything in your life if you aren’t rested.  Second, spend actual time with my kids and tell her what feels normal and what feels forced.  This is going to be a hard one for me.  I’m not the mom who does legos with her kids for 4 hours.  I’m not interested in researching rainbow looms online and teaching Grant the diamond pattern.  I don’t want to play dolls with Phia.  I tell myself that I don’t like these things because I have never had to do these things.  Someone else was doing these things with my kids because I was in the hospital with Ib.  So they all feel forced.  Hmm.. Should be interesting.  Mainly because I HATE Monopoly.  That game takes forever!  And it sucks.

I have to say, last night I downloaded my “calm” app and listened to it.  I stopped it halfway through and grabbed Grant and put him in bed with me since Stuart is traveling.  (Something I did with Isabella every night Stuart was gone.)  I listened to the rest of the rain on my phone for 15 minutes.. at least I think I did.  Slept like a baby.

But while the kids were in camp today I did 5 hours of Foundation work.  Damn it.  Baby steps.

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