It’s been a while…..

It’s been a while….

Haven’t really been able to put thoughts into words. At least ones that I can type and express.

It’s been two years. (Yes, little over)

Not a day goes by when I don’t ache to see you. Hear you. Long for that sweet giggle. Or the daily argument with your sister.

It almost feels like I live in a parallel universe. The one with you in it. And now the one without. And the two blend, and overlap.

But the thing is…..Life feels suspended. Yes, we do our everyday routines. Work. Sleep. Repeat.

But there is always that hole. That missing puzzle piece.

And it’s irritating.

And lonely.

How do you live with a piece of your heart gone?

In a forever haze I guess.

Jason and I, we think of all the things we want to do and see….things that you would have enjoyed. And we go. And try to experience as much as possible–because we don’t know when our last day on this earth will be. No one does.

Back in the fall 2016, we went to San Francisco as a “less than whole” family. We put the Z stickers on every thing we could. “Leave her mark” on the things she would have loved to have experienced. We have continued this over the last 2 years. This week, I had someone I barely know, comment to me that she “found” a Zayla sticker when they were on vacation.

It caught my breath. And just for that moment, I knew. She is with us. All the time. And she is loving the stickers being placed all over, with her in mind.

Currently we have quite a few stickers, but I was thinking of ordering more. If any one would like some for their next adventure to show Z, let me know. Donation of $1 per sticker would be appreciated.

Tonight, I get to speak about childhood cancer research at a benefit for the Team Make a Difference fundraiser. TMAD is a non profit that does room makeovers for those battling various diseases/illnesses. What better way to heal, then in your own sanctuary? Preparing my speech has made me think about what I need to share.

Last time I looked at the American Cancer Society’s 990 Tax Forms was back in 2014. Well, unfortunately not much has changed. It’s shocking to me that anyone would want to donate money to this organization. The numbers are ridiculous. Cancer IS BIG BUSINESS. And that makes me sad. I see at least one patient every week being newly diagnosed with cancer. That is insanity. When will people wake up and stop donating money to organizations that are not fiscally responsible???

Not sure how much my blogging makes a difference, but I must share. Here it goes:

AMERICAN CANCER SOCIETY 2016 990 TAX FORMS

Revenue (your donations) $813,199,479

EXPENSES

Salaries. $455,280,085.55.9%

Fund raising fees. $170,957,35121%

Research grants $102, 873,77912.6%

Patient support, and

prevention programs $ 82,946,34710.4%

And once again, the Organization’s Mission statement on their tax form states: To save lives, celebrate lives, and lead the fight for a world without cancer.

When over half of your revenue goes to salaries? Sounds like BIG business to me. Wake up America! Stop funding the wealthiest “non profit” in the world.

And this is why we do NOT Relay for Life. Don’t ask us to. EVER.

Want more information? Check out this link: http://naturalsociety.com/cancer-drugs-cost-american-cancer-society-exposed-67380/

Here are some great organizations that DO fiscally raise money for research. IF research is your goal.

Alex’s Lemonade Stand Foundation

St Jude Children’s Research Hospital

Pancreatic Cancer Action Network

Colorectal Cancer Alliance

Breast cancer research foundation

Lynn Sage Cancer Research Foundation

Obviously there are more organizations, but these are the ones that STAND out, and do a very good job supporting research without spending TONS of money on salaries and advertising.

Enjoy your day…….

#missyoubabygirl

Grieving mother….

Grieving mother….is NOT happy.  And not for the obvious reasons either.

It was brought to my attention that a local high school is donating ALL the proceeds from their childhood cancer night to….you guessed it….Relay for Life or better known as American Cancer Society.  ARE YOU FREAKING KIDDING ME?????????

I decided to put my words to action…..and sent this email to the Principal and Assistant Principal at Bishop McNamara.  And here’s the thing….it shouldn’t be a “it’s affecting one community more” kinda thing…..childhood cancer CAN and WILL strike again. Incidence rates of diagnoses is rising every year. There are numerous children in OUR entire Kankakee area that are, or have battled childhood cancer. Schools should be supporting CHILDREN!! For god’s sake, that should be the priority. Period.img_2237 

Mr. Kennedy and Mr. Granger,

It was brought to my attention that Bishop McNamara High School is having an event Friday night that is themed, Go Gold for Childhood Cancer. Go Gold for childhood cancer was MY idea last year at Herscher.  I think it is great that Bishop McNamara High School is wanting to support childhood cancer.  Until I heard who the event is going to benefit.  

 I would like to share a blog excerpt that I wrote this past June.  I did the Go Gold to raise awareness and money for childhood cancer research and families.  Because I WAS a childhood cancer family.  Until MY family was destroyed in March when my daughter DIED from brain cancer. 

Please do the right thing.  Please don’t dishearten Bobbi’s efforts to make this world right from losing her best friend.  Relay for Life does NOT support children with cancer.  They barely support adults with their pitiful donations to research.  Don’t believe me?  You are more than welcome to look up the IRS form 990 on ACS.  I have.  Below is that information.  You are wrong when you tell a student that Relay for Life and American Cancer Society give 79% to research.  That is a lie.  Look it up.  Facts are that it is 13.2%.  Far cry from 79%.  Please do share which site you are getting your misguided information from?? Directly from American Cancer Society?  How about searching charitynavigator or other charity whistle blower sites??

I will be sharing this conversation on my blog and website. Please do the right thing.  Reconsider using the horrific faces of childhood cancer, then giving the donations to organizations that do NOTHING for the kids you are trying to support.  It is a slap in the face of the children who are battling.  And it is a slap in the face to the families that have lost their loved ones to this horrific disease.

*****background note****** Zayla’s friend Bobbi (who attends Bishop Mac) went to the Assistant Principal today to talk to him about where the money is going.   He gave her a website where he gets his charitable “facts” and “statistics”. She mentioned all the research  (Zayla’s mom) has done and he gave his “opinion” on why some of us may not like RFL. Bobbi got upset when talking to him, she wears that heart on her sleeve. “This week’s football game is for Childhood Cancer Awareness and the proceeds are going to RFL of Kankakee”.

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From my blog:  www.teamzayla.org  June 2016

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.

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 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 bull.

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~

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“Purpose of Life is to Live with Purpose”

Must push forward….

Today I want to share something I posted exactly one year ago….

Oh how I would LOVE to even go back to this shitty time.  And all those shitty feelings.  Because my girl was at least still HERE.  With me.

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My intentions for pointing out the lack of Zayla’s friends showing up to the Walk this weekend was not to 1. Get excuses from anyone or 2. Make anyone feel bad. My intentions are to show all of you what is OUR life. Everyday.

*******This past weekend there were 22 girls who volunteered at the AshleyCan Walk….22!!  That is 22 more than last year! *******

September is an incredibly emotional month for our family. Especially Zayla. Every year we try to raise awareness. Get people to join in our fight. Some years, the support is great. Others? Not so much. I can see why other childhood cancer families just walk away after treatment. Never looking back. Because this is RAW! Painful. I get it.

When treatment to cure your child turns into years…..and even decades…..people lose interest. It’s sad. It’s scary. We all have our own lives….and we are all very busy. Yep. I get it. I’m busy too. But I am not allowed to turn away. Ignore. This is MY life everyday. And it will never change.

There are so many people who support Zayla. I know this. Many days it is THE only thing that pushes me forward. I often get the comment….”you are so strong” or “I don’t know how you do it”…..Well, some days I don’t know either. The thing is…..I don’t have a choice. You just do it.

I’m not very uplifting these last two weeks…..I can barely support my sick daughter and keep my shit together without crying. I have moments of rage. Insane anger. Then terrible grieving and crying. You may not see this. But it is there.

God, this child of mine is so, so, so strong!!! You see, this past weekend she not only faced talking about her cancer without any peers present to support her……but she also asked numerous girls her age if she could be a “twin/triplet” with them for a stupid Homecoming dress up day. I know….this is small in the grand scheme of things. But to her it WAS everything. At the moment. Each of the girls that Zayla asked (six total) ALL said….sorry, I am already a twin with someone. I ask all of you……what in the world is wrong with our youth???!?!?!?!?!?!?!?!? No one wants to ask my daughter to be included???? I just about can’t stand it. I can feel the anger rising up in me. I want to protect my baby!!! Because, God knows I can’t protect her from this cancer diagnosis.
I am forever grateful to Zayla’s new friend Jaid. Her response to Zayla’s asking…..Well of course I want to!!!!

*****I pray that those who have shunned my daughter in the past, can now realize that life IS short.  And make a change.  Be the support to the lonely.  Be kind.  You may not think your actions can impact another human….but they do! *******

This story is only one of many…..it is a constant struggle for Zayla in school. Not only educationally, but socially as well. From lunch table struggles, not being asked to go to “friends” houses, not being able to play volleyball because she is too weak, struggling with simple homework tasks that she use to enjoy…..it’s heart wrenching.
This is our life. And I try to savor every minute of it……because we don’t have a crystal ball to see the future. And when she giggles…..it’s like everything gets washed away….if only for a few minutes.

Must push forward….although the memories that I come across everyday in the world of FB can be brutally painful….I know I must push forward. Maybe if I say it enough it will actually be true?!?

Pushing forward….I want to share an idea that was brought to me by my dear friend Karla.  She suggested we do a cookbook for a fundraiser to raise money for Zayla’s scholarship fund.

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What an excellent IDEA!!  So, with that being said, we will be organizing a recipe collection to put in a nice hardcover spiral book that will be sold to raise money for a culinary scholarship for another student.  Since my girl will NOT be able to be the chef she longed to be.

trying to be active for you baby girl….

miss your sweet face.

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Some things never change….

Some things never change…..or do they?!?!

Social media has a way of making us see things.  For me?  I feel like I am seeing things with a different lens.  A foggy lens.  A lens that I have to wipe tears away from in order to somewhat see.

Lately I have been seeing the battle language.  Now, when you are in the thick of battle this language can be inspiring….uplifting….and often gives hope.  Words like….Stay Strong, Don’t give up, or Fight!! This battle language has a different meaning to myself.  Now.

Oh yeah, I use to raise my fists and want to fight with the best….Hell, Zay’s mantra forever was, ‘Fight Like a Girl’.  But when Zayla passed away, I often thought to myself….do other’s feel/think that she gave up? Or that she didn’t deserve to beat the monster? Or that there was something that we just didn’t do right?  Didn’t believe strong enough??

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I would find myself getting angry….not only with myself, and the circumstances but the audacity of others to make the statement stay strong, or fight harder…..Like the cancer patient isn’t going to try like hell to survive??!?  Or the grieving parent isn’t going to keep breathing? or stay strong? Because we don’t have a freaking choice!!! …..I know there are moments that I thought this could be true, but a broken heart does indeed keep beating.  Thing is, we all have a shelf life.  Everyone is going to die someday.  We just never think we are going to outlive our children.  It’s not natural.  And it is so unbelievably unfair.

Today my FB memory from last year was a long post about Childhood Cancer (imagine that).  I am going to share it today, because some things never change…..the heartbreaking thing that changed since last year was that my daughter isn’t here anymore.  She “won” her forever cure….just not the way we all had hoped.

*****************************************************Not sure if all my Childhood Cancer Awareness posts have “lost” any of you….September is especially hard and emotional for me. You see, I can only vaguely remember what life was like before. Before I heard that terrible 6 letter word. Cancer.

We coasted for several years without the constant “bad” thoughts of cancer…but yet, it was always still there. Always in the back of your mind. Other cancer moms/dads get it. Once you have been forced to endure this new normal….everything changes.

That boy I posted about last week…whose story was so similar to Zayla’s. He died. At home. On hospice. 14 years old. And that could be ANY of your children/grandchildren/godchild etc… Cancer strikes 1 out of every 285 children. Scary. (And now we know it was also our sweet Zayla’s fate as well)

That being said, I am going to let you all in on something. I am at times selfish. There are a lot of things that I just really don’t give two shits about. But I am recognizing my faults and taking the advice that we attract who we are. So if you are angry, you attract anger. If you are happy, you attract happiness. Deep, I know.

My goal is to strengthen myself by defining positive traits that I value most and want to see in others. So, from here on out, if all you do is bitch and moan about this and that….I will have to say farewell. I want to attract positivity, so therefore I must surround myself with positiveness.

Most posts that I find myself reading on Facebook that are mean and hateful are things that mean NOTHING compared to a family burying their child too soon. Get over yourselves people. Be grateful that your family is intact. Start taking the mantra that somewhere, someone has it much shittier than you. Because it is true. It can always be worse.

I will continue my awareness and action posts for the remainder of this month. It IS what I care about. In ten days Ms Zayla will be having her MRI. We are accepting any and all positive prayers, juju, pleasantries….you get the picture. This is an important MRI (as all are really) but this is one year later. One year is a big deal in the brain tumor time frame.

And if you have been challenged to do the Whipping Childhood Cancer….Zayla LOVES to watch these videos. Call it inspiration sprinkled with some humor. It is support that helps her get through the “crappy” days. I just want donations for research. A gentler treatment that cures would be nice.
Peace~**********************************************************

Miss you baby girl.

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A Letter to you……

Dear Zayla…..

Woke up this morning to your sissy cutting and prepping the quilt she is making.  This one is of your favorite t-shirts.  She actually is going to make three…..one for each of us girls.  I picked my favorite shirts that you would wear…..


I only woke a couple times last night…..still try to wish myself back to sleep and to dream of you.  It didn’t happen….or if it did, I don’t remember.  Either way, it sucks. 

Today is September 1st…..your favorite day!!  You would look forward to this day.  Always making your gold ribbons and sharing them at school….or trying to sell them to raise money for research.  I loved your passion….it’s what pushes me everyday.  Was contacted twice yesterday about two local childhood cancer events.  You would be so proud!!  People are listening….not only are they aware, but they are doing something!!!  The Herscher High School volleyball team are having a Go Gold event October 4th.  You know that is because of you my sweet child……your impact. Your sweet sweet smile and the way you changed lives.  Including mine.  And the Herscher kids football league is also hosting a fundraiser event for childhood cancer.  


So we push on…..because like the song verse by  Lord Huron states, “What good is living the life you’ve been given if all you do is stand in one place?”  Keep moving forward.  

I have the next six days off work…..sure wish you were here to help me prepare for our 1st Annual Bag Tourney.  I can see you making your cake pops….or helping me cut vegetables….or yelling at your sisters for not helping  more.  Ugh.  Can I just have the chaos back???  Tired of the loneliness…..

Love you baby girl.

Miss you terribly. 

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