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.”