It is so unfair…..

It is so unfair……another child has passed away to childhood cancer. But the thing is, it’s happening every day.  Of every year.  Seven children die every day to cancer.  SEVEN!!  Today? It was our friend Austin Barnett.

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And our hearts are broken.  And hurt.  What’s different for me this time?  This child loss?    I know.

I know the unfathomable pain that this mother is feeling.  And it almost makes me unable to breathe.

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Maybe it is the flashback? No.  I have those every morning.  When I wake and recognize that my nightmare is actually during the day.  Every single day.

And now?? Another mother.  Another family must feel this……

My biggest worry for the recently bereaved?? Is that people will stop.  Stop calling.  Stop reaching out.  Stop doing SOMETHING.  Please, don’t be that someone.  Please don’t be afraid to acknowledge your own fears.  Your own grief.  Your own pain.  The amount of support……days and weeks following a loss is almost overwhelming.  Please don’t forget months down the road.  Hell…..years down the road.

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In three days it will be September.  September IS childhood cancer awareness month.  Please DO something.  For the seven children that die everyday.

RIP Sweet Austin……

Miss you baby girl.

 

“Life is short. And life is long. But not in that order.” Unless.  Unless your a child battling cancer.

Big Pharma, anyone???

****Caution: There may be Foul Language Ahead****

So, I have been seeing much discussion lately about Big Pharma aka Pharmaceutical companies that make all the “wonderful” medications, vaccines, chemo drugs that Americans need to survive….

Anyways….the discussion of late has been the increase of the EpiPen.  The EpiPen is needed for individuals who are having an anaphylaxis event….usually due to an allergy to bees, peanuts, etc..

The price of these said EpiPens have increased to over $600 for two….a cost that most Americans cannot easily afford.  So what do they do?? I hope that the majority of us believe that LIFE is worth more than $600.

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The thing is…..this price gouging of life saving medications is nothing new.  Last year there was the Martin Shkreli price gouging of Daraprim (live saving medication for Malaria) or J Michael Pearson’s price gouging of Syprine (for Wilson’s Disease) went from a copay of $700/yr to over $10,000/yr.

What IS new this time??? The CEO of Mylan Pharmaceuticals is Heather Bresch.  Ms Bresch is the daughter of Senator Joe Manchin of West Virginia.  Hmmmm….sounds a bit scandalous if you ask me.  AND….the EpiPen affects more people.  That, in turn makes a louder outcry when insane gouging of life saving drugs occurs.  Poor choice Ms Bresch.  You have officially pissed off millions of Americans.

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And the response from Mylan Pharma is that the increase of the EpiPen listing price is necessary for the company to recoup it’s investment in acquiring this drug.  Huh??  Here’s an idea…..that most business minded people can understand….you make your business cuts in other areas.  How about the lofty salary that you make??  (Heather Bresch’s income for 2015 was $25.82 million dollars!!!)

Quite honestly, the best shifting of blame that I have heard from Big Pharma is that the insurance companies have decreased the amounts that they cover, therefore the patients/customers must pay more at the Pharmacy counter.  Well shit!  Someone has to pay for those lofty annual CEO salaries…..might as well be the patient who needs the med, right?????

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So, why do I give a shit about any of this? I have seen and felt the impact of costly life saving medications being too expensive.  Three years ago we battled with our insurance company to get a very costly chemotherapy med approved for Zayla.  It was excruciating the amount of time, effort and tears that I endured trying to get this medication.  Today?? I am angry.  Angry that NOTHING has changed.  In fact, things have gotten worse.  Life saving medications should not be priced to the point that people cannot afford them.  Period.

Healthcare and medications should be made available to everyone.  Period.

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Why are we not outraged that CEO’s make OBSCENE amounts of money???  Are the CEO’s making the drugs??? Ha! Don’t think so.  You have scientists and doctors that painstakingly spend countless hours researching to find better treatments.  Yet, we are all at the mercy of Big Pharma AND our government to get the cures we need.

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Something needs to change.

Here’s a little glimpse of reality…..Big Pharma CEO’s salaries:

  1. Len Schleifer, Regeneron, $41.97 million dollars
  2. Jeffrey Leiden, Vertex Pharm, $36.64 million dollars
  3. Brent Saunders, Allergan, $36.61 million dollars
  4. Martine Rothblatt, United Therapeutics, $33.21 million dollars
  5. Lamberto Andreotti, Bristol Myers Squibb, $27.06 million dollars
  6. Heather Bresch, Mylan, $25.82 million dollars
  7. Kenneth Frazier, Merck & Co., $25.03 million dollars
  8. Alex Gorsky, Johnson & Johnson, $24.99 million dollars
  9. Robert Hugin, Celgene, $24.24 million dollars
  10. Ian Read, Pfizer, $23.28 million dollars

Total bank for the top 10 is $298.85 million dollars last year.  That is INSANE!!!

So, go ahead and tell me….how do we not blame Big Pharma??

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If my daughter’s brain cancer would have been more profitable one of these Big Pharma companies MAY have researched more and perhaps found a cure.  But you see…..childhood cancer is NOT profitable.  There just isn’t enough sick kids.  Not enough deaths.  Instead?  We will keep the revolving door going…..so these big Pharma companies can get there payday.  Because that is what matters in America, right??? The Almighty dollar.

Screw you Big Pharma.

Miss you baby girl.  Every day.  Every minute.

Here’s the thing…..

Here’s the thing…..life is about choices. Really. It is.

Most days, I choose to get out of bed and play off this incredible cruel joke of living without my daughter.  I choose to.  Nobody forces me to.  I just do it.

Some days I choose to let miserable people invade my thoughts.  Seems silly, why would anyone choose to let miserable people invade their thoughts?? Well, that’s what you are doing when you let bullshit into your life.

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So today?? I am CHOOSING to not let my thoughts and day be invaded by things that don’t matter.  Things that are NOT in my control.  Because the only thing that you can control is yourself and your choices. Some people do not have very good self control…..I have been known to occasionally be one of those people. But, even when I am at my worst….I still have choices.  Always have.

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So what does all this mean really??? I don’t want to be the “victim” of childhood cancer. It has already stole so much from me and my family.  I don’t want to be just another grieving mother who is so hypersensitive to everything around her. Always in a funk.  Often angry. And so very, very sad.

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I want to choose to change my thinking.  Because, whatever is going on in my mind, is what I am attracting to myself.  Simple law of attraction. I want to live a life of purpose.  Make a difference.  Have my life make a difference…..to someone.  Anyone really.  Stop doubting…..have more faith.

 

Live more like Zay.  That’s it.  I want to be more like Zay.

Miss you baby girl.

 

Together Apart….

Together apart….

most definitely an oxymoron. And my constant mood.

Not sure when this conflicted feeling started….was it the day Zayla died? Or perhaps, it was actually building all along.  But those two words placed together is exactly how I feel….All.  The.  Time.

Last night I had a conversation with a couple women…..maybe the few drinks I had made it a bit easy to kinda lay it all out “there”, but anyways it was nice to just be honest and real.  It went something along the lines of, hey thanks for talking to me….many times I feel shunned or people don’t know what to say.  I get it.  Grief is uncomfortable.  It’s painful.

It’s also life.

My response to these very open and loving women….Fuck man, just say something. Anything.  I prefer a conversation over silence.  I live in silence everyday with my own thoughts and feelings.  Everyday.  And yes, it’s true I’m generally on the cusp of losing my shit daily.  But, the loneliness feeling is only compounded by the silence.

Grief is not contagious.

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Tomorrow, Jason and I are going to Chicago to attend a Pearl Jam concert.  This concert will be bittersweet for numerous reasons….but mainly because a lot of the PJ songs that we love and listen to…..connect to….is due to our youth and what we loved at that point in time.  It is also easy to get caught up in the lyrics that have meaning, especially when a part of your heart is missing.

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Zay’s favorite PJ song was Alive….and she would sing that song in a way that you could feel that she was just so happy to be alive.

Bittersweet.

Torture Is….I’m still Alive, and she is not.

 

Frustration abounds…..

It must be a record of some sort…..I have written three times in one week.

Today, I have a complaint.  And I just can’t go to the positive side.  Perhaps it is my unwillingness to tolerate bullshit…..

The grieving family.  I do realize I am the voice of not only my experiences with Zay passing…..but also, for my girls and husband.  And although they do not share their emotions as much as I…..they still have them.  And their hidden feelings/emotions are generally on overload.  Bottled up.  And so very fragile.

My Middle is struggling.  Struggling with sleep at night.  Struggling with change.  Struggling without the one real best friend she has had since she was 3 years old…..her sister Zayla.

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I understand that people grow.  Things change.  Shit, I am an adult and I have seen this first hand over the past several months.  But when I see it affect my struggling, just trying to survive Middle?  It frustrates me to no end.

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My suggestion? or my Hope really??  That people can give my Middle just a little more grace.  A little bit of support to let her try to navigate her new life.  Don’t abandon her.  Be a true friend and support her when she is at her worst.  Stop saying “I’m here for you”…..show it!!!

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I keep trying to teach my Middle that it is better to put positiveness and goodwill out into the universe…..that the law of attraction is that you will get back what you give.  But damn if it is not hard to want to go all Momma bear on people.  But, I bite my tongue.  Erase texts that I would love to send. No meddling. Stop focusing on things we really have NO control of.

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And that brings me back to the stay focused, stay positive.  I guess what I am preaching and complaining about, I am somewhat actually doing.  Hmmmm….food for thought I guess.  Maybe we can all learn from this.  And grow.  Because when it comes down to it….we should really be focusing on being better humans.

Doing good versus doing nothing.  I like that.

 

 

I survived……

I purposefully work as much as I can…..physically can, that is.

I like to pick the days that will sting….and work.  In hopes of keeping busy…..and not letting the day get to me.  And when I say get to me….what I really mean is, eat at my heart and take away my sanity.

Today was one of those days.  But, I have not only survived the melancholy of no first day of school for my baby….I also survived seeing all the precious updates in the land of Facebook.  (I tried to stay away, but the darn Lularoe mega sale is tonight, so I had to)

Don’t get me wrong….I am glad that the world is still innocent and grand for most people/parents.  To live in a time when parents outlive their children should not exist. Ever.

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I may not blog as often as I would like….but I do make notes of my thoughts on a daily basis into my phone.  I don’t feel like I can blog properly if it is frequent…..I have to have things “just so” before I will let the world read it.  Probably has something to do with my controlling nature….or something like that anyways.

I’m going to share something I wrote a couple weeks ago….that I titled, “Being forced into Empty Nesters”, because that is where my husband and I are….struggling through being robbed of the last years with our youngest child at home.  It’s too soon.  And so unfair.

Empty nest.  One thing I’ve noticed? I truly like my husband.  The kids have always made me appreciate him.  (He’s a great provider and awesome dad….makes me giggle on a daily basis.) But now??? I just truly enjoy his company.  Not only do I love this man, but I truly like the person that he is.

And for that.  I am grateful.

Still searching for that damn peace……

 

If only……

the chaos of a new school year could be mine to have.

***Rantings of a grieving mom during her first school year without her child***

Instead?  I’m visiting my daughter’s grave.

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Forgive me if I am absent for the next few days…..I just can’t.  

Can’t see all the first day of school posts.  

Not because I don’t care…..I actually care TOO much.  And my heart hurts so.  That I won’t have a first day of school picture of my Zay.  Usually annoyed with my filming…..an eye roll…..but always a glimpse of that smile.  Always. 


I have really been struggling the last week. Actually, everyday is a struggle without the presence of my dear sweet Zayla. But, lately?? I have been truly battling sadness and anger. I hate that about this grief journey. I hate how much it has changed who I am. Who my living children are. And who my dear husband is.

So please, take this as a blanket statement….to all of you enjoying this life moment.  Best of luck to you and your children on this upcoming year of school….it’s a glorious occasion.  Enjoy it.  Take as many photographs with your mind that you can…..I’m still trying to mentally feel and see those moments from last year. 

That being said, I do have one favor of all who take the time to read my musings……PLEASE, please, please stop complaining about all the mundane things.  Be happy that your lives are chaos.  That you have the struggles of getting back on a routine.  That your kids have too many activities to go to.  That your life is busy.  Believe me, I would literally give my life, everything I own to have Zay back here on earth.

Everything.

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Appreciate what you have.  Love fully.  And always be mindful that someone else, somewhere has it much worse than you do.

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We are a shell of the people we were before.  Before the hero in our lives died from cancer.  It makes you disheartened.  Angry.  And sometimes skeptical of others.  How could it not?  Your hopes and dreams have been shattered.

Angry that our lives are forever broken.  Angry that there just wasn’t more that could be done. And at times….I am angry at myself.  I was her healthcare champion.  I was suppose to protect her.  Do everything and anything to help her live.  And it just wasn’t so.


I seen this quote below

 by Alanis Morissette and it really spoke to me…..truly, why don’t we face these emotions head on??!? Why don’t we comfort each other more?  Where are the tears?? We should be teaching our children that it is okay to cry, and be angry….usually at the same time.  Or happy, fearful and confused all at once.  That is life.

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And then, after days of reflection and trying to write this blog passage…..I get a visit.  In a dream. Your smiling face…..a giggle.  How sweet and precious….if only just for a minute.  My broken heart can still beat because of these occasional little blessings from Z.

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So my thoughts have lead to this…..if I keep putting anger out into the universe, I am going to keep getting it back.  I preached to Maddie earlier this week…..what you put out in the world is what you will get back.  I can encourage her with these words, yet, I can’t take my own advice.  Zayla’s death should not be this stifling painful future for us…..we should use this to catapult us to greatness.  Try to be great.  Like she was.  


I am moving forward with change.  Negativity not welcome.  Focus on the good…..and try to put some sort of change and goodness into this world.  Live with purpose.  In honor of her.  

Because she deserved so much more.  

Trying to find my peace~

 

Another year….

Another year….my baby should have been 15 this week.  Instead, she will be forever 14 years old.

Don’t get me wrong, I am so grateful that we had 14+ years with this amazing human.  But it just wasn’t enough.  And so unbelievably unfair that you were taken too soon.IMG_6937

Another year…..of watching the Relay for Life event unfold in our local town.  I am grateful this year that I am working today……  I don’t have to travel past this event and feel the extra hurt of knowing that people are still oblivious.

However.

Today while sitting at work, I received a text from a friend….asking where to locate the ACS information.  And that text pushed me to finish writing this blog that I actually started researching and writing earlier this week.  It’s just so hard to keep pushing forward….raising awareness…..when all I want is MY daughter BACK!!

And that can’t happen.

So maybe, instead of feeling sorry and dismal, maybe, just maybe, I need to share this……American Cancer Society, and Relay for Life are a SCAM!  And I am not just pissed off about this because they don’t do squat for kids…..I am pissed off because there are SO, SO, SO many organizations that would do MORE with donations for ALL cancers.  I am also pissed off because MY employer supports Relay for Life and ACS.  Why?!?!?  I know there are a ton of intelligent people that can do the research like I have.  I know there are many many people that can do simple math, like I have.

Is it just laziness? Is it propaganda?? Or is it that American Cancer Society has been shoved down our throats for years….that they are helping people have more birthdays….that they are reaching for that cure to cancer……that they are “there” for Americans.  I call bullshit.

So here is the breakdown folks….

ACS received $847,861,530 in donations in 2014 (latest IRS form 990 information). Of which, $441,686,016 was used for salaries.  That is 52% of all donations go towards salaries.  Salaries like that of CEO John Seffrin who was paid $1,287,247, and COO Gregory Bontrager made $1,120,038, EVP David Veneziano received $1,110,883 and Sr EVP Joseph Cahoon Jr made $1,008,931 in 2014.

Another sick thought…..$17,144,816 was paid to lobbyists.  We all just love lobbyists, now don’t we??!?! Whereas $19,112,920 was paid for grants and assistance to Americans in need for programs like: Look good Feel Better program, Wigs for women, Transportation, guest room programs and other patient support systems….Can you see that just 2 million dollars more is paid to actual patients suffering from cancer versus companies that lobby our governments congressmen and women?!?! Seriously??!? Don’t you think that cancer patients deserve more?  I mean let’s get real here…..all those cancer patients and their families are raising money for ACS.

That brings me to fundraising expenses…..$201,303,109 was spent to raise more money. That is 23.7% of money raised goes into raising more money.  Huh, you say??? For every $100 you raise at the Relay for Life event…..$23 goes to raise more money.  Sounds like a great investment, doesn’t it???

My final, and honestly the most important part…..RESEARCH! According to the 990 IRS form Mission Statement for the American Cancer Society is this: To eliminate cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering from the disease through research, education, advocacy and service.  Research you say?? What a joke!! $112,688,736 was spent on research grants in 2014.  That is a measly 13.2% of raised funds….OR $13.20 for every $100 raised.  I find this insulting.  Absurd.  And an absolute need for CHANGE!!  Don’t keep feeding into the Big Business of Cancer….

Image result for friends don't let friends relay image Seriously??!?! A world without cancer will NOT be due to ACS.  Sorry folks…..Relay for life does not support Research….

I did see that the revenue received by ACS from 2013 to 2014 did decrease by $71,668,244.  Maybe, just maybe America is waking up……

I would like to add…..A GIANT thank you to my daughter’s school (and Mrs Jensen) for changing our school’s mini relay for life event at the school…..Now a majority of raised funds (by the district teachers, students and families) goes to more fiscally responsible cancer organizations…..

baby steps…..must keep pushing forward…..my baby girl has got to be smiling down from heaven about that!!!

To ALL cancer survivors and their families…..You don’t need to walk the lap as a survivor at the Relay for Life event to feel accomplished….YOU already are!!

 

Peace~

“Purpose of Life is to Live with Purpose”

 

Living without your child 

How does that really work? 

Being joyful when so much hurts. It’s a peculiar thing. Wanting to be cheerful, but just not fully. 

That’s the best way I describe this. Life of change. 

Breathing. But oh so shallow. And without exhilaration. 

But. I cry. And cry often. 

If you see me with sunglasses on…..probably been crying. 

I cry in the shower. I cry in the bathroom. I cry in the car. A lot. I cry at the gravesite. I cry in bed. Almost every night to sleep. 

But even through all my crying, I am still functioning. I have a new job. I work long hours. I deal with the public. 

I also want to hear my dead daughters name. I want to think about her. Talk about her. Still live without her. And would especially enjoy others to do the same. 

It’s ok to talk to us about our dead child. You are not going to upset me more than I already am. Impossible. Nothing can hurt more than the loss of your child. There is no way. I just can’t believe it. 

And somehow. I made it today. 

I went to a large social event. Supported my graduating senior and her new life endeavors…..and simultaneously mourned that my youngest would never experience this. 

Loss sucks. 

Congrats Maddie on your graduation. We love you and are so proud. 

Always Missing You Z…… 

RIP Zayla Ann 06/06/01-03/30/2016 

    
    
 

Together forever

The past two weeks have been a blur. I struggle with even knowing what day it is. 

This morning I woke with an “epiphany”. I don’t want to live the last days of my daughters life with grief. There will be plenty of time for that when she is gone. Maybe that is why I have always been “stellar and strong”. You won’t see me crying in front of her. I am always trying to keep things happy and uplifting. Always. 

But these last few weeks it has been very tough to keep things positive. 

I was asked earlier this week, by the organizer of the Manteno St Baldricks, to come up with something to say at the event this Saturday. You see, all of us cancer parents are family. I know what all the other survivor families are feeling. I was them not too long ago. 

When your child finishes treatment and is deemed “cured”…..you have a sense of relief followed by a whole lot of guilt (for the other families not so lucky), fear (for the unknown because childhood cancer never truly goes away) and gratitude (that your child has made it through this hell of a roller coaster). But you keep most of this shoved deep within your heart. Not only for your own sanity, but out of the respect to those who are not as fortunate. The angel families. 

 I want to share a comparison……imagine giving birth to a new baby, but the day before your best friend, or sister lost their baby. That is what a survivor parent feels. Every single day. How can they not??? They have been through some of the darkest days of their lives and now they are pushed out into the world……into the normal. There have been many children that have passed over the course of these past 11+ years of Zayla’s cancer journey. And each one made me feel as if it was a personal attack. Maybe it’s the realization that we are all so close to that reality. Maybe it’s just the fear. Either way, a little bit of my heart and soul would be chipped away at seeing another child die from cancer. 

Thing is…..although I am wanting to live these days and not grieve the past and near future, I find myself growing angry. All the “if onlies” run through my head. I so desperately wanted Zayla to survive long enough to get her forever cure. We tried everything to help her get to that point. But it wasn’t enough. And once again, another child is going to die as a direct result of cancer. 

None of us asked to join this club called childhood cancer. But here we are. 

It is time for people to stop just being “aware”. Do something. Make children a priority. Show your outrage that children get so little money for research. 

As I take care of my dying child….I want you all to think about it. Feel it. And just imagine. It could so easily be your child. Your grandchild. Your friend. Or your neighbor. 

Childhood cancer is bigger than one damn month. It’s bigger than one event. 

Yesterday the Daily Journal did an article on Zayla. One thing was missing. What can people do?  My family doesn’t want anything except one thing……a cure to childhood cancer. The only way that is going to happen is if people step up. And not just the parents, close friends and relatives of these cancer kids. I’m talking everyone. If we are a nation that can spend millions on campaigning for office…..we are a nation that can spend billions on innocent children. Because children’s lives matter. 

If you want to do something…..start a fundraiser- it can be anything from car wash to donations to an event like St Baldricks, to taking your lunch to work for a week and using the savings to donate. Just do something. 

Today is the annual Sy Baldricks event in Manteno. Today, Ms Zayla will not be able to attend, and that hurts my heart just a little more. 

https://www.stbaldricks.org/teams/mypage/107122/2016

Go Team Zayla!!!

Love & Peace~