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.

Cat hair, tootsie rolls and Marcus

12:50. I’m a couple of minutes early because I know I have paperwork to fill out to really tell her how bat shit crazy I am. I walk into the office with no secretary. It has a small table with a clipboard full of bat shit crazy questions for me to fill out and a bowl of Tootsie rolls. Just a light snack to have during this test. I walk over to the 5 black chairs in the waiting room that seem to be covered in white cat hair. A small radio is pumping today’s hits of Justin Timberlake and with another bowl of Tootsie rolls. This doc must love her some Tootsie rolls.

This cat was just sitting in my chair.

This cat was just sitting in my chair.

I sit on the chair with the least amount of cat hair on it and start my test.

1. Do you get headaches?
2. Do you get tired during the day?
3. Do you have trouble falling asleep?
4. Do you drink?

Blah blah blah.. All questions that anyone at anytime would answer “sometimes” to, especially mothers of small children. So I am skimming and marking “sometimes”. Let’s not let the cat out of the bag on my craziness just through this simple test. I’m done in 3 minutes.

I’m waiting.. I’m waiting. I start to think. Let me make sure that I read all those answers and didn’t mark “Sometimes” to a question about whether or not I like to make it with sheep or something. Sure enough.. not a sheep question. But there is the question.. “Do you think of hurting yourself?”. Followed by “Do you think of harming others.” My skimming resulted in me selecting “Sometimes”. Which I quickly put an X over and selected “Never”. I’m not that far off my rocker. I mean, the old lady that writes a check in line at the grocery store gets close to a beating.. but other than that – I’m pretty civil.

1:15. She turns the corner to call me back. One quick glance up and I realize… I don’t think this is a woman. But I can’t tell. She’s definitely trying to be a woman, but I’m not sure that is what God intended when she was born. I once went to Atlanta on a girls trip and booked a hotel where they were having a transgender conference. I was blown away at all these men dressed like women. But they weren’t wearing clothes that were in MY closet. They were wearing clothes that they THINK women wear. Ugly blue polyester pants, blue sandals with toes that were painted in this awful blueish/grey manly color. Some flower top and makeup that draws too much attention to your features. Women don’t wear makeup like that. Needless to say, I can’t stop paying attention to all these details that Atlanta made me very aware of. Is that an Adam’s apple? Wow.

Her/His office is blue leather couches that are worn with a blanket thrown over the back that I’m sure the white cat from the waiting room naps on and bowls of Tootsie rolls on either end table. “Marcus” has me sit and goes through my test. Instantly his (let’s just go with his going forward), eyes light up when she sees that I’ve replaced my answer on the killing people question.

“I see you have changed your answer here on these questions. Can I ask why?”

I didn’t want to tell her that I was skimming her questions like you do in a doctor’s office so my stupid answer is, “Oh, I just thought that meant something else.” What does that even mean? I’m dying.

“Well, just so you know before we start that I am required by law to go to the authorities for any acts of violence or abuse that you tell me about”.

Gotcha. This is starting off great.

The next hour consists of jumping from random topic to random topic with no rhyme or reason. The conversation does not flow and even when s/he talks there is random silence at the end where I think, was I just asked a question? But I don’t know what the question is so I just stare back at Dr. “Marcus”.

Marcus asks about Isabella’s death and I tell her that Ib died at home with us in our bed. Stuart and I were with her, when cleaned her up and made her presentable to the family to see her etc… I notice after 5 minutes that his mouth is almost on the floor when I start delivering the details of this scene. Pause for long silence after my story and then.

“I actually think you have PTSD.”

“Like people who come back from war?”

“Yes.”

“Um, okay.”

Marcus launches into conversation about how we probably should have let her die in the hospital because we were probably torturing ourselves for eternity by watching that happen in the house or that we should have let hospice take care of her more in the end to shelter ourselves from this pain. I zone out.

I notice that her/his degrees are hanging on the wall.

Degree of Psychology received at MU

Degree of Psychology received at MU

Both from colleges that I have never heard of. One of them may have been from Monsters University. I begin to picture her there with Sully and that green eyeball guy. I get a chuckle out of this on my blue couch and realize I’m not really listening to her anymore.

I decide to interrupt her and say, “I actually don’t regret that at all because it was the ultimate selfless act, to not care about my own harm and to just provide her with undying love and attention.”

“I guess you are right.” She says with a wink. The wink makes me sweat a little.

I realize at this point that looking for the right counselor for you is a lot like looking for a house. You go out the first day, not sure of what exactly you are looking for. But by the end of the day you say.. “I now know exactly what I don’t want.”.

Here’s what I want. A normal person, with a normal secretary out from with normal chairs that don’t require lint rolling after I get up and mints. Everyone needs a mint. Have a degree that I have heard of and a couch that wasn’t the one you had in college that was replaced by something cooler when you finally graduated. Have me sit for the first hour and tell me that you are just going to listen today. Start out and let me tell you who I am, what was my childhood like, how is my family. How I met Stuart, when did I had kids, when was Isabella diagnosed. Let me tell you about the 5 year process of caring for someone who you knew was probably going to die. How was her death and how has this last year been. When I walk out the door, google The Isabella Santos Foundation and look at her face on the website, watch our video, like our Facebook page and then think about what you want to talk about the next week. See me the following week and let’s get busy.

Our session ended as oddly as it began. Marcus found some pieces of paper on grief that she left to get photocopied for me. I began browsing the titles of the books on her shelf. Super disturbing. “How much porn is too much?” Really, that one needs displayed in here? Marcus comes back and tells how grief is like waves that take you over to where your feet aren’t touching the ground but then the waves go back out and how the waves will be less frequent the longer time passes. Got it. Waves.

Second handout was a checklist of “Natural and Normal Grief Responses.”. She thought this would be good so that I could confirm to myself that I wasn’t bat shit crazy. I was just normal.

1. Feeling emotionally numb. Check.
2. Knowing death has occurred, but having difficultly believing that it really happened. Check. I say WTF daily.
3. Having a desire to smoke, drink, or use drugs (especially anti-anxiety or tranquilizers) Check. Except for the tranquilizers. That must be for the sheep loving.
4. Having difficulty sleeping. Who doesn’t? Check.
5. Being overly concerned with personal health. I do go to the gym a lot. Check.
6. Feeling exhausted and lacking energy. Check. I have kids.
7. Feeling low at times of birthdays, holiday and special occasions. Check. Check. Check.
8. Spending money on things usually not purchased. Um.. okay. I’ll blame grief.
9. Telling or retelling things about the deceased and the experience of their death. Check.
10. Talking things over with the deceased person. Check.
11. Feeling mood changes over the slightest things. Yep.
12. Feeling guilty for what was or was not said or for not “having done enough” for the deceased. Check.
13. Being angry or irritated at the wrong person, wrong circumstance or the world in general. Check. But in my defense.. a lot of people in my life are being assholes right now so I’m going to “half” check that one.
14. Experiencing an intense preoccupation with the life of the deceased. Check. Blame ISF.
15. Assuming mannerisms or traits of the deceased. Nope. Thank god – one NO! If I start wearing knee-high socks or wearing badly mix-matched clothing I will then change my answer.
16. Feeling as if life has no meaning. Maybe.
17. Not wanting to be with people. Check. Reference #13.
18. Feeling self-pity and not feeling needed. Sure.
19. Crying at unexpected times. You bet your ass.

So my one good thing from Dr. Marcus was this list that told me that I’m normal. Oh, and I took a handful of Tootsie rolls with me. Turns out they are a decent snack. And she gave me her/his personal cell phone number. Is that weird? Just kidding.

Yum.

Yum.

Off to find a new counselor.

Just so you all don’t think I’m crazy, my friend googled my counselor and found her listed client focus. I kid you not. How did I get here for grief counseling???

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June.. aka.. Rock Bottom

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The entire month of June was a blur to me.  I could see if coming towards me like an accident on the side of the road as I got closer and closer to it.  Every single day became harder for me because each day I knew that “this time last year” she was with me and she was slipping through my fingers like syrup.  I am so upset with myself for not writing every day in caringbridge that month because I want to remember every piece of it.  But at the time it just seemed like every day was the same but one little thing would change each day with her.  But just now I forced myself to read my June entries from last year.  The Disney trip, Father’s Day, Taylor Swift, Stuart’s birthday, the visitors, the baths I would give her, how she slowly drifted away.  All of it is just so awful.  I find that I keep wanting to shut the book but instead force feed it to myself to get it down.  I do this because this entire month of June was all about denial for me.  I absolutely refused to allow myself to go down this path.  It was just too hard.  I’m not even sure I visited her this month.  But now that it’s done I need to go back and allow myself to take it all in and get some of it out.  So now I sit in her room at her white desk that we bought her for all those years of homework she would have.. and I write alone.

With the one year anniversary of her death I find myself taking a good look at myself and my life.  I look back on the things I did and said in this last year and I’m not too happy with it.  I don’t really allow myself to grieve this loss.  I cover up my sadness with jokes, or sleep.  Or worse, with a drink or an anxiety pill.  I throw myself into things that keep me busy like the gym or the Foundation.  Anything to take my mind of it.  For me, I don’t want to be with my own thoughts because the sadness and anger overtakes me.    It’s like her death is in some box inside me.  Not only am I not opening the box, but the box is closed up with super glue.  I can’t listen to the sound of her voice, let alone watch any video of her.  The video created for the Foundation was like hell for me when I watched it.  I still can’t watch it without sending myself into a tailspin.  I’m sure that by holding this all in, it is changing me in horrible ways.  I see myself writing off people, relationships, loved ones.  Mainly because I can’t deal with the work that comes along with them.  I can’t allow myself to be pulled under the water with anyone because I will drown.  And chances are, I’ll kill them too in that process.  What I have done this year is surround myself with things that are easy and drama free.  If it makes me life more difficult, then I don’t need it.  Maybe because I already think that I have this box inside me that is stuffed to the brim with shit and one more ounce will open it.

Not that I’m all bad.  😉  I think I have been an amazing Mother this year.  I haven’t skipped a beat with my kids because I missed so much already.  It is very important for me to have them see me at every event at school or dance practice, you name it.  I hear all these stories of kids who feel like their parents were never the same after a death of a child.  I just refuse to have my child on a couch someday paying $150 an hour to some shrink telling them that I never recovered.  Nope.  Not gonna happen.

With her one year anniversary I also found myself also having a sense of entitlement.  I was given this shitty deck of cards and now that she’s gone, I deserve to have a happy life.  So many things in my life I dealt with because I had to at the time.  I always thought that life would look a certain way when I wasn’t spending my days in the hospital or on planes or arranging schedules.  And now I feel that I’m still playing with this shitty deck of cards somehow.. and I’m pissed off about it.  But maybe that is something I need to take upon myself.  If you want a better, happier life.. then make the changes that you need to have that.

First step.. time for counseling.  Grief counseling.  Get it all out there and just vomit on a strangers couch about where all my missteps have been, what angers me about it, what triggers my sadness, how do I live the rest of my life without her.  Gotta figure those things out for sure.  I at least owe that to my kids.  Start being okay with remembering her.  Listen to her voice, look at her pictures, sit in her room, visit with her, talk with her.  Do whatever you need to do so that you stop closing her out of your life.  I have to stop acting like this person never existed.

I honestly can’t wait to see what this grief counselor is going to say that is going to fix it.  In my head I’m saying awful things like, “hopefully she has lost a child too so she can relate.”.  Yikes.  Good attitude going in.  But I feel like if someone hasn’t lost a child, they have no freaking idea.  And I feel my eyes rolling at every suggestion they give me.  “Oh, so that’s how I get through this in your expert opinion?”.  This poor woman has no idea what she is up against.  I am like sandpaper with sharp edges right now so she will be earning her money for sure.

My hope is that I can be open and willing to commit to this process.  See what she thinks and how I can be “cured”.  I’m sure her way has got to be better than what I’m doing, so I should just keep telling myself that.  Can’t get much worse than this, right?  I think this is what is commonly referred to as “Rock Bottom”.

The grass is always greener

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My perfect sleeping partner

My perfect sleeping partner

It’s Wednesday.  Otherwise known as the day I visit Isabella.  I go out and kiss her plaque and say, “Hi Baby.”  I sit down and a talk to her for as long as I need to.  Sometimes I’m there 5 minutes and I leave because I never want the conversation to be forced.  Other times I’m there for what seems like forever.

When we knew that we were nearing the end, I felt like the decision on what to do for her was simple to me.  I made a hard stance that I wanted to have her cremated.  This is also what I want for myself because the thought of coffins wig me out.  I put Stuart and my Father-in-law on the details because I couldn’t handle them.  I really had to not think about what was actually happening or I wouldn’t go through with it.  Wherever this process was going to be done, it needed to be a place that I never would know the name of or a building I would never drive by.  Where she would be placed was left to them as well.  I knew what I could do during this time and these decisions were something out of my realm of possibilities.  When the van came to get her the morning that she passed away, I felt myself quickly becoming unsure of my decision.  How could I do this to my little girl?  I kept telling myself that the thought of her in a box underground was just not something I agree to do.  I would watch her and Grant play with big boxes for fun and I recall them wrapping each other up in these boxes.  All fun and games until the top is closed.  Then only a couple of seconds would go by until they had to burst out of the top.  The fear of being contained.  These moments in play told me from the beginning that this is the route I would take.  It’s not like she was a 80-year-old woman who wanted to be buried alongside or on top of the husband she was with for 60 years that passed a couple of years earlier.  This was different.  Or so I told myself.

The waiting process was horrible.  Watching her drive away in the back of some rapist looking white van.  I knew where she was going but had to sit in agony for the next couple of days, or what felt like weeks until I was told the process was complete.  I died a hundred times over during those days because I didn’t know where she was, who was with her or all the fears that she is not being handled with the respect that she deserved, etc..  But then we received word that she had been “delivered” to Calvary.  And just like that she was gone.. again.

And while the decision felt to right at the time… I regret it every day now.  I want so badly to come out to Calvary to visit her and lay out a princess blanket or a big little giraffe blanket she would have loved and lay on the grass above her.  So much of our relationship was built by laying together.  We laid together so much in fact that she became my favorite sleeping partner.  She would lay so still and quiet.  She would slip right into whatever curves of your body were against hers and just fall asleep.  It one of the things that everyone loved about her.. her ability to cuddle up to just about anyone.

This last year I have tried to lay against people.  Grant thrashes all over the place.  I practically wake up with a black eye.  Sophia has to be nose to nose with her hand resting on your cheek.  Very cute actually but can at times invade your personal space.  Even Stuart and I fell asleep for YEARS spooned together in bed.  Stuart twitches as he falls asleep so I can barely let him do it for more than 2 minutes now without shaking him off.  For years I had a permanent perfect person to lay next to me and now she is ash in a gold box.

I’m sure that the grass is always greener.. no pun intended.  If I had chosen the other way, it too would have had its negatives.  The though of what the earth was doing to my child or this tiny box.  All those horror movies you watch with people being buried alive and freaking out and screaming as bugs and dirt started to seep in.  These images would haunt me for years.

Truth is, both of the options are horrible and I need to keep reminding myself of that.  There was no good decision to make or any way that I could be connected again to her when it’s my time.  Maybe I will squeeze my ashes in the gold box with her so it would be like we became one again.  The way it felt when we would lay beside each other what seems like an eternity ago.

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A small ziploc bag of guilt

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Memorial Day 2012

Memorial Day 2012

I lay in bed and I toss and turn.  I’m tired but I can’t sleep.  I know what it is that is keeping me up so I go out and grab my computer.  I need to empty my brain so I can just let it go.

It’s our annual Memorial Day weekend at the beach.  We bought this little beach shack when Isabella was in my belly.  Hopes and dream of bringing our kids here to run in the sand and build memories.  But instead of happy thoughts, the beach has been a source of frustration for me for years.  I beg Stuart year after year to sell the house.  I didn’t enjoy coming here.  I was always fighting kids with fists full of sand in their mouths, diapers, naps, complaints of when we can go home, medicines, bald heads that burn easy.. you name it.  I would spend hours packing medicines and latex gloves and clinical trial bottles and accutane pills that warn you to stay out of the sun.  Some years would be better than others, but last year was the worst.

We came down with Isabella on a DFMO trial.  A clinical trial that was doing nothing for her but making her sick.  The cancer was spreading and she couldn’t get out of bed for more than an hour without throwing up.   She just laid in this spot that I’m laying in now, begging to stay in bed.  I knew the cancer was eating her up and I didn’t want to scan her because I already knew.  She always fought so hard and here at the beach she started giving up.  I would lay next to her in bed and fill the pillow with tears.. trying not to wake her as I sniffed the running snot from my nose.  It frustrated Stuart and I remember him saying that if she were going to die, she wasn’t going to die this way… at least not giving up in bed.  Get out of bed he would tell her.  She would have moments where she was herself and she would play on the beach, but the blackness inside her would swallow her and she would fade quickly.

I remember that she wanted to go shopping with my Mom and I one day and I begged for her not to come, I just needed some alone time.. some space.  But she tagged along anyway and I remember being so pissed about her coming.  She just slowed us down and I didn’t want to deal with her for a small period of time.  What a horrible day in Mommy history. She found the strength to go the entire time without getting sick just to prove me wrong too.  One of the many times she wanted to prove me wrong.

She died one month later.

And now here were are at the beach.  We packed no medicines.  And as Sophia tells me EVERY SINGLE DAY.. we have one missing.  Bella.  I try not to think about it as we go about our vacation.  It seems to work for awhile.  But then it happens.. I find myself being happy.  My Mom and walk hand in hand with Sophia down to the pier, which for years felt like miles away because Ib could never walk it.  When in fact it is probably 1/4 mile away.  Sophia walks it with ease.. better yet she could run it.  I have my moment where I think.. I’m happy right now.  The vacation is easier, less stressful, the kids are just having fun, I am relaxed, Stuart and I aren’t fighting.  It’s the first time I have actually enjoyed being here.. maybe since we bought this shack 9 years ago.  And then there it is..  I feel like shit for feeling happy.

It’s funny how that happens after you lose someone.  You feel like crap all the time and then one day you feel happy and then you feel like crap for feeling happy.  What an awful thing to know that your good moments will forever be tainted with guilt that they are good.  I tell myself.. I’m not happy because she is not with us here.  I’m just happy that for once things are easier.  My ultimate wish is that she were here, healthy.  But we weren’t that lucky.  It seemed that we were always being chased or pushing a weight uphill or lying to ourselves and saying that one day this will all be a distant memory for us and for her.  Lies.

So now do I prepare myself for years of never fully allowing myself to be happy?  Even today my Mom, Sophia and I walked through our local cheeseball Christmas Shop.  I’m in such a good mood watching Sophia look at Mermaids and wave “hi” to the gigantic Santa by the front door… then I hear it.  Christmas music.  Ugh.  And I actually said to myself.. I hate Christmas music.  WTF?  Who hates Christmas music?  Apparently me now.  Because Christmas which once brought me so much joy is now the worst time of the year apparently because I lost a child.

Something is going to have to change inside me.

For everyone’s well being, I’m going to have to start to learn how to allow myself to experience happiness.  Being happy is good and I know everyone will say, “She will have wanted you to be happy!”.  Yes, yes.. this I know.  But it is hard.  Maybe I will just try to have happy with a LITTLE less guilt.  That will be my baby step.  Not a shit-ton of guilt.. just a small ziploc bag of guilt on top of every tiny happy moment I have in my life.

I want to listen to my kids singing Christmas music or decorating a tree and smile.  I want to walk on the beach and collect seashells and laugh and have that memory.  I want to have times that are genuinely amazing and not always say, this is less amazing because she isn’t here.  That is not how I want to live my life.. always beating myself up for doing things in my life that are wonderful.  I would hate to think that I will never experience another “best day in my entire life” because she is not here.  I have to try to not have that happen.

But God do I wish she were here..

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Mother’s Day

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My first day as a Mommy

My first day as a Mommy

Mother’s Day.  It is never what we think it will be.  A day to sleep in, flowers, breakfast in bed, good kids, husbands telling us all the things we do so well, quiet time for yourself.  The Mother’s Day of movies.  My Mother’s Day begins by a slap on my forehead of Sophia waking me up.  A couple of minutes later a kid is crying.  I try to zone it out.  But the next time a child cries i know my sleeping in is over.  It’s 7:40 am. When I come downstairs, I can tell Stuart is already irritated with the kid’s behavior so I figure we should go ahead and get this breakfast over with before there are heads rolling on the ground.  All I want is some blueberry pancakes.

We sit waiting for a table and I feel it swarming me like a million bees stinging me.  I try to mentally swipe them away but it’s her sting.  A very familiar sting.  A sting that sweeps me out like waves and drowns me.  By the time we are seated, the tears are dropping on my menu.  I try to compose myself and be in the present and pull it together.  I pay attention to Sophia eating the whipped cream of her hot chocolate next me.  I smile at her when she looks at me.  She looks right up and says, “We have one missing.  Bella is missing.  Bella is in heaven.”  I should of known this was coming because this is her thing lately.  Always telling me that she is missing… as if I don’t know every minute of the day.  “She sure is.”  I tell her as a I try to push the blueberry pancakes down my throat.

She eats happily next me, Grant plays on an Iphone and Stuart isn’t sure what to do.  He asks me, “what did we do last Mother’s Day?” to try to make it easier for me.  Oh, i received beautiful flowers from you all and I had to leave them on the kitchen counter and take Isabella up to Levine’s. We spent the night there because she was so sick.  Just her and I, cuddled in bed.  A Mother’s Day I dream of now.  The next morning we would get a call from Dr. Kaplan that the cancer was everywhere.

“The call from Dr. Kaplan seemed like a blur when he started reading off all the bone spots that lit up with cancer.  Legs, pelvis, hips, shoulders.. I started to zone out.  Stuart and I were prepared for things to grow a little, but maybe not at this rate.”

The Mother’s Day spent in the hospital was the beginning of the end.  She would die in 46 days.

People ask why we torture ourselves with this information.  That is so easy to say from a distance.  You become obsessed with the statement, “this time last year…”.  Because you can’t freaking believe that this time last year she was curled up in your arms.  This time last year we were different people, a different family, I was a different person.  And I can’t escape it.  My stomach is in knots.  I know that every day for the next 46 days I will be saying this time last year… she was dying, but I was with her.  And then in 46 days I can’t say that anymore.

I want to shake myself and get out of here.  Take my alive children on a bike ride or for ice cream.  But what I want to do is break her ashes out of that stupid little building and  crawl up in my bed with them and lock the door.

It makes me so sad to think of all the Mom’s out there that have to grieve like I do on this day.  They can’t smile and hug their other kids when they open their handprint art or homemade cards.  They are thinking of the ones the lost and how they would give anything in the world to just be their mommy to them again.

I miss her with every bone in my body.

Give to prevent another Mother from losing a child.  http://www.firstgiving.com/fundraiser/isabellasantos/isf-2013-5k-for-for-kids-cancer

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How can being good be so bad?

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Things have been so busy lately with Isabella’s foundation lately.. In a good way. Busy is always good when you are trying to do good. I sit back and look at all we have accomplished in the last couple of years, especially in what we have done in the last year and I am so proud. I feel like I have aligned us with amazing organizations and more importantly, amazing people. The team we have working with us are mainly all volunteers and they are passionate about the cause. People that you can sit with casually to catch up and find that the conversation always goes back to how we can improve, how we can get better, how much more of a difference can we make? People who think that what we are doing is one of the best things they have ever done with their lives. To me, that is the big piece of the puzzle with our team. People that are invested and committed. The perfect team.

So why is it that with all of the good you feel that you are doing, there is always a cloud following you waiting for you to fail or judging every move you make? In others eyes we are giving funds to the wrong places or not giving enough here or there because it’s not what THEY would do. Or my favorite one that is that we will not succeed because of the team we have assembled. I just don’t understand the negativity around doing ANYTHING good? We don’t give 100% of what we raise to Neuroblastoma research and that just irritates the crap out of some people. But when you start an organization of your own, isn’t it your choice to determine where the money raised goes based off of what is near and dear to your heart?

Our Make a Wish trips were some of the best memories we have ever had with Isabella and we hope funding them will give those memories to another family. Or our stays in New York would never have been possible without the Ronald McDonald House, so we support them too. While 80% of our funding goes to research, that other 20% drives some so crazy that they look past the $100,000 check we wrote to Sloan Kettering this year. When did doing something good, suddenly become bad?

Somehow putting people around us on the Foundation that our friends has also left a bad taste in the mouths of others too. Why not have some of the most amazing people you know work side by side with you on your life’s dream? Why is that destined to fail? Does no one stop and realize that this has nothing to do with a team of people and really just about a little girl who wanted to live?

Things like these make me scared to allow the Foundation to grow. It seems that the bigger you get, the more hurdles you have to climb in the public. Shouldn’t we all just be proud of people for making a difference?

I know I’m not perfect. I catch myself doing it too. Just this week we were asked by a local Relay for Life group to speak and a remembrance ceremony at their walk in May. (Relay for Life supports the American Cancer Society by the way.). At first I was hesitant. In the pediatric cancer world, the ACS does not have a very good reputation. Very little funding goes towards pediatric cancers and even less or zero to rare cancers like Neuroblastoma. Every time a parent loses a child to cancer and someone says, “I made a donation to the American Cancer Society on behalf of our child,” we all cringe a bit. It’s not doing much to save our children’s lives. But honestly, I had to think about it… It is doing good so how can I think that it is bad? It’s saving lives of Mothers and Sisters with Breast cancer and ovarian cancer. It’s saving the lives of Fathers with prostate or testicular cancer. It is saving people every day and they should be commended for that. There are so many people that do NOTHING. Needless to say, I will be proudly speaking at a remembrance ceremony at the end of the month.

I catch myself even get on Stuart for donating his platelets to the Red Cross and not the Community Blood Center of the Carolina’s because they are who I support. Done with that one too. His platelets are not thrown in the garbage at the Red Cross, it is saving lives there too. He’s donating platelets for heavens sake. Shouldn’t that just be bad ass enough in itself?

So you have a pledge from me going forward. No longer is anyone considered bad for doing something good. If we all turned our negatives away from people that were actually doing something and tried to get people that do nothing off of the couch to do a 5k, have a lemonade stand, donate blood… Maybe that would make a bigger difference. Let’s stop fighting each other or hoping for failure and celebrate what is good about the amazing things that people are doing.

At the end of all of these organizations is a story about someone who lost a battle or wanted to live, but didn’t. Their whole life was a struggle. So let’s make the things we do in their honor a good thing. Let’s get rid of the clouds that hang over them even after they are gone. Let’s let them shine the way they were supposed to.

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Baby steps..

So as time moves on, it seems that my other two children are growing despite my best efforts.  Grant is now in a big boy bike and losing teeth by the handful.  Sophia is a rotten 3-year-old that is stubborn and like to talk my ear off.  As they grow, I find myself purging and purging to make room for new age appropriate things.  Luckily, my neighbor Andrea had a garage sale last weekend that benefitted Ib’s foundation.  Perfect excuse, I tell myself to send some stuff out of here.  Grant’s stuff is easy.  I mean really, how many Star Wars shirts and madras shorts does one child need.  He’s practically wearing Stuart’s size so his stuff is easily thrown into a pile and shipped off.  Sophia’s stuff seems more personal because it’s girl stuff.  Who can rid of skinny jeans in a size 2 or cheetah print flats?  But I know that there is no longer a use for them in this house because this reproductive system is down for the count.  But as I rummage through her piles I find random things that were passed down from Isabella.  A lot of her size 2 clothing has more than just Sophia’s fingerprint on it.  They are the pajamas that Isabella wore the first time she got chemotherapy, or the t-shirt she was diagnosed in or the green dress we bought at the gap in New York City with the matching tights that had the bear on her bum of them.  I find my stomach in knots as I make piles to pass along.  It’s like that scene in Ghost when the character Molly starts going through Sam’s things when he passed away.  He stands beside her watching her save concert tickets for a concert they hated or a pack of mints.  He’s standing there saying, “What are you doing Molly?  We hated that concert!”.  He’s telling her that the shit is stupid and to throw it away.  I tell myself that she would say the same thing to me.  But in fact any time I did a hunt for goodwill, it would always have to be done while she was at school because she would FREAK if she saw me donating it.  Crap she didn’t even play with suddenly became a prized possession.  So because of this, I’m holding on to just about everything.  Sure, I let a couple of items go into the garage sale – hoping they would be picked up by someone I knew so I could feel better knowing they are in a good home.  But honestly, I sat at the sale.. watching people by these worthless items of her and I wanted to stop each and every one of them on the way out.  Grab the items and run off in the distance and hide in a bush.

Last year on her 7th birthday, we had to spend the day in the clinic getting blood and platelets.  Another holiday ruined.  The staff at the clinic rummaged through their toy closets and provided her with all these random gifts in her transfusion station.  A weird horse barn and prairie (with no horses), a spray on tattoo kit (yikes), Highschool Musical paraphernalia etc..  All stuff that didn’t get the chance to be played with because things happened so quickly in the end.  Those were easy tosses over to the sale because it would be years before Sophia was even interested.. if she were interested at all.  But I just sat there staring at these items on the table.  I wanted to make myself a little secret pile of things but I knew I needed to let them go.  And sure enough, they were purchased.  My first real experience of giving away her things.. and I felt like I was going to vomit the whole time.

This baby ain't going nowhere

This baby ain’t going nowhere

Which leads me to the big-ticket item.  As I mentioned earlier, the kids are growing.  Sophia’s bed (actually just her mattress) is on the floor of her room.  We did this as an easy transition to a big girl bed.  The crib was not a convertible bed so it has been packed in the attic for almost a year now.  The rest of the nursery furniture is still in Sophia’s room.  Yes, it is her furniture.  But it was also Grant’s furniture and Isabella’s furniture.  Stuart and I wandered around a baby store with Isabella in my belly and picked this beautiful furniture out.  Of course it had the matching rocker with pink fabric because Isabella’s nursery was ALL pink.  Pink bunnies was the decoration and we went with it.  Pink bunny chair from Pottery Barn, pink bunny stuffed animals.. you name it.  And so all this stuff sits in Sophia’s room today.  But now she is ready for her big girl furniture.  Her “Bella Bed” as she calls it.  She wants a bed not on the floor but an actual bed like Isabella had.  And with this request comes a move that I don’t want to make.  Getting rid of Isabella’s nursery furniture.

I had an internal breakdown about a spray on tattoo kit that she never even used just a few days ago.  And now I’m supposed to get rid of the crib she slept in?  The chair I breastfed her in and rocked her to sleep in?  Are you friggin’ crazy?  Yes, apparently you are because new furniture was ordered for Sophia and I had to watch two sweaty guys carry her nursery furniture to my garage.  Little did they know the significance of this furniture and if they so much of scratched it I would stab them in the neck.

So now every day I pull my car in tightly because the garage is filled with this furniture.  Little does Stuart know that this furniture is going nowhere.  I feel myself aching to purchase a storage facility to house all of the stuff that I go crazy about.  “Yeah, I sold that furniture!”.  Hell no I didn’t.  It’s sitting in a storage facility just a couple of miles away so I can go and sit in that rocker when I have free time and feel at home.  Statements like this make me think that I’m going to be a crazy person someday.  I will be buried under a pile of her clothes in a secret storage facility or something.

And I know what everyone says.. take your time.  Get rid of things when it feels right.  Well it feels hella wrong still and I’m holding on to stuff like grim death.  I know… baby steps right?  No pun intended with the nursery furniture.  But for now, I’m just not ready to part with a single item… and will start researching storage facilities tomorrow.

A million simple things

Hello. My name in Erin and I’m a procrastinator. Procrastination is my thing. I’ve been this way my whole life. The only reason I was a good student is because I’m wickedly smart but I also have a memory that is as long as it is deep. I can remember just about anything once I see it which makes me wonder why I never became a doctor. I’m getting sidetracked here. Back to procrastinating.

I have been asked by a high school friend of mine to read at her wedding this weekend. Quite possibly the worst job in history other than maybe working the guest book. (Which my sister and I mastered before the age of 12.) Not only am I reading at this wedding but she asked me to actually write something to read. I guess because I do these rants on the internet, I have somehow become someone who writes. Um, I write cancer and tragedy. And have you seen Stuart and I together at times? I’m sure we are not the poster children for the most loving relationship. I do not write about love. Who am I, Maya Angelou?

I actually thought this would be a good exercise for me in writing. Mainly because my husband tells me that my writing is so angry these days. “I wouldn’t be surprised if everyone that reads your posts doesn’t tell you to get on meds or go speak to someone. Especially with all the school shootings and stuff out there.”.. direct quote. WOW. See, generally I am a happy person. These posts are more like my diary of the evil coal inside me that I get out. I didn’t realize I was the picture of bad mental health here. So before I’m put into a straightjacket, I thought I could try the other path to show people who under that hard candy shell is actually a pretty sweet little lady.

Ok. So… Love.

Hmmm..

My friend has asked me to write something to read about love. However, I’m no expert in love by any means but I do think I have love in my life. The problem with love is (here I go again on that ranting… ) that in this age, we are all paying $12 each to go to movie theaters and watch big screen Hollywood love. Love that is big romantic gestures, toe curling sex, soul mates and happily ever after. Is that real love? It is not love we see every day. Sure, the beginning is all rainbows and unicorns and maybe toe curling sex but things begin to settle into routine and jobs and family. A famous writer once said it best when he said, “That is just being “in love”, which any fool can do. Love itself is what is left over when being in love has burned away, and this is both an art and a fortunate accident. ”

We all have our own definitions of love and for each of us it can be very different. For me at times love can be very simple but meaningful. I find that it is the little things in the day that make me feel love. For me…

Love is letting you go on a girls weekend to Las Vegas because you are about ready to have a breakdown if you don’t have girl time.

Love is getting up before you on a Sunday and getting you a coffee and bagel because you are grossly hung over.

Love is buying you tulips and peonies on Valentine’s Day because they are your favorite even if they are out of season and not giving the standard dozen roses or picking up the cheap ones at the grocery with the price tag still on them.

Love is getting your car detailed because it unfairly always smells of milk or has goldfish crackers crushed into the floors.

Love is agreeing to go see your favorite band in 90 degree heat JUST BECAUSE you love Mumford and Sons.

Love is understanding when you are dog tired and just lets you sleep instead of poking you for sex.

Love is agreeing to be poked at for sex when you are dog tired and just want to sleep.

Love is helping you clean up your child’s vomit at 2am, changing diapers, giving baths and reading stories.

Love is still opening doors for you.

Love is making your feel beautiful even with saggy boobs and wrinkles on your face.

Love is knowing when to shut up and listen and not trying to always fix your problems.

Love is putting up with each other’s crazy families.

Love is agreeing to see one of the Twilight movies in the theater instead of the new James Bond Movie that just came out.

Love is not making someone’s career take the backseat to yours.

Love is knowing when you just need some “me time” and being okay with that.

Love is surprising each other with things you know they love such as Chickfila milkshakes, pinot grigio or a purse they have been eyeing.

Love is being that couple that compliments each other in groups instead of putting each other down.

Love is not always looking for a thank you.

Love is not running or threatening to run when times get hard.

And love is not always patient and not always kind.. but it tries really hard to be.

Are simple things like these written into love stories that we see in the movies? No, because they aren’t glamorous. They are simple. And sometimes that is what love is. A million simple things that can hold two people together for a lifetime.

Bam. That’s all I got.

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