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

We are all alike. And yet so different—

We are all alike. And yet so different. 


In my recent travels with hubby—I fully understood this. 

Driving down the coast of So Cal, you see it. Sometimes moments of judgement sprinkled with understanding and genuine caring. 

Without knowing your story. Or even caring for that matter. 
But that is how we should treat all humans. Equally. And with kindness and non judgement. 

Each stop along our way— I tried to leave a bit of Zs mark. Some subtle. Others—in your face.  When we traveled to NOLA after Z passed, I started leaving stickers when able—to leave her mark. It was like she was with—and yet, she is always with us. 


So to those who may be reading this after seeing a Team Zayla sticker—stick around. My rantings of childhood cancer and subsequent loss can maybe inspire. That’s my hope. That it is not all for nought. 

Live life everyday. Never hesitate to do something out of fear. 


Miss you baby girl. All. The. Damn. Time. 

The damn fish died. 

The damn fish died.  

And it was actually weeks ago.  but I am so often consumed with my own daily survival. I didn’t notice.  

And the significance of this?  The damn fair goldfish was obtained by Zayla just weeks after her surgery for her new brain cancer diagnosis.  The damn fish LIVED longer than my poor girl did with the tumor.  And I cried.  Because it is ALL so unfair. 

Just ugh. 

In one week we will be entering September, and Childhood cancer awareness month.  


Next Saturday we will be hosting the 2nd Annual Bean Bags Tournament in Memory of Ms Zayla.  All donations and proceeds will be put into the Zayla Mitsdarffer Culinary Scholarship for a Herscher High School student.  This past year, we were able to donate $2500 to a student.  This is something that Zayla would be very proud of.  Making a difference.  Please join us…..if you don’t want to play, come out and enjoy the day, donate if you can, and share in the wonderful memories of our sweet girl.  


On a different note…..

I wanted to share my thoughts on what September and Childhood Cancer Awareness/Action means.  Just this past week, I had a friend reach out and ask about a NFP, and if they were “good” (I love that people are asking/thinking, thank you Brett).  We all have the capabilities to look any NFP up on their website and see their IRS tax forms.  Yes, it can be time consuming.  And there are other websites that actually do the work for you….like charitynavigator.org.  Here’s the thing….many companies “appear” to be non for profit, and donate a set % of their profits to charitable organizations.  But that does not make them a NFP.  

Here’s the thing. If you are buying something under the impression that they are giving money to a charitable organization…..and your sole purpose of buying said item is for what they are supporting….PLEASE think twice about this. Unless you truly wanted said item, and were going to buy it anyways, the marketing of selling things to give a % of proceeds to a charitable organization is BULLSHIT.   People that can be so excited about a product because it gives them a warm, fuzzy feel good moment that part of their money is going to XY or Z charitable organization.  Great marketing.  Poor taste.  Really, it just reminds me of American Cancer Society using the faces of children battling cancer to get people to donate money….then only give kids 1%.  COMPANIES should NOT BE making a profit by using the faces of cancer children.  PERIOD.  

shop.alexslemonade.org. Has some GREAT Tshirts….AND ALL the proceeds benefits childhood cancer and research.  Not 10%.  Not 20%.  All

Store.acco.org.  Is American Childhood cancer organization.  They have some awareness items such as car magnets, stickers, gold ribbon pins, gold nail polish etc…. ALL proceeds go to help children with cancer and to support research.  


Maybe I shouldn’t be irritated by this. Maybe I should just keep my mouth shut, and be happy that any company would like to advertise childhood cancer awareness AND give % of their profits.  Am I asking too much?  Well…..my daughter DIED.  And maybe, just maybe if people donated money to places that actually can make a difference, maybe someone else’s child won’t die.

  

I want more.  Because I will forever be living with less.  

Miss you baby girl.  Every hour.  Every damn day.  

I cried today….

I cried today……And not just my normal cry.  

It was the ugly cry.  

Which may seem weird…..I mean, how can something so simple as seeing the headstone spray paint markings of my daughter’s grave practically bring me to my knees??? 

It only took me over a year to finally order the headstone.  

It just seems so final.  

But then, again.  It is so final.  

This hollow feeling in my heart has not improved over the last 16 months.  In fact, at times I feel like it is weighted down with memories that my soul would love to return to.  

Damn I miss that kid.  


#missyoubabygirl 

Internally screaming…..all the damn time. 

Internally screaming…..all the damn time.  

That pretty much sums life up.  Everything is now measured by when you were alive, and when you weren’t.  A before and after of sorts.  

Today I am wearing one of your scarves. At times I catch the color in my peripheral and can almost imagine a hug.  Almost.

  

Last night the week caught up to me.  The emotions.  It’s an odd place to be…..on the verge of losing your sanity between devastation and anger.  You can feel that edge so damn close.  I can see how people do take a break.  Just check out.  Is that weakness?? Or just a mechanism to not self implode?!?!? 

So I paint.  And self medicate with some wine.  Just chill.  Trying to preserve my sanity.  


But I think that is life.  We are all just surfing along the edge of it.  It’s just about time and who gets more.  (Thanks Kathy) That is all.  Ever. 

So do something with the time you have.  

I will.  Always for you Z.  


Go live as much as you humanly can.  All the damn time.  Living it.  

Miss you baby girl…..

Not tidy.  Not wrapped with a tiny little bow.  

And so I write…

Today was such a roller coaster of emotions.  

I didn’t shop for Christmas until today.  I just couldn’t.  Everything about it makes me cry.  Makes me angry.  And just fucki== hurts.  

This morning I had to help the Middle get tires on her car.  So I basically kidnapped her for the next three hours as she waited for them to be done.  And we shopped.  Briskly.  


thing is….when you are out and about amongst the chaos of Christmas, because let’s face it…that’s what it is.  Chaos.  You kinda get the energy of it all…..until you look at something to buy and realize you are only buying for two children now.  That honestly is a really shitty part.  The constant reminder that there are now two.  

So as I sit here tonight….debating if I can even wrap these said gifts that I bought.  Sipping the new wine that came today, I just take what I can.  Unwrapped gifts.  Seems fitting actually…..no kidding, Z would wrap about 80% of the gifts I bought for the past couple years.  I’m just not wrapping them.  So there.  


Life is chaos.  But most the time we bring that shit on ourselves.  

Today three of Zayla’s good friends brought up a car full of toys to Comer’s Children Hospital….her hospital.  She would be pleased.  


“I bring Comer Cheer….for our friend Zayla who loved giving gifts to all the children.  We wanted to continue her tradition!”

And as I tried to navigate this eve before Christmas eve….I was able to get through the day with the love and support from so many.  The Kankakee County Correctional Officers Association chose Team Zayla Foundation to receive one of their donations…..$500! We are so thankful to receive all the support…..we are just trying to make a difference.  In memory of our Z.  Thanks Rich Ball for all you do….it was great to chat with you on topics that mean so much to me and our family.  Childhood cancer robs many families of years with their loved ones.  I know way too many children who have died from cancer.  It changes who you are.  forever.  


I ended up making 118 signs to presale orders.  It was so therapeutic for me to have this to focus on.  Because honestly, the more I can keep busy, the less time for my mind to keep running.  I will be making signs again come next Fall….was a great way to keep me focused and raise money for a great cause.  


This year, St Jude’s Children Hospital is the recipient for all the money raised.  I don’t have an exact total just yet….but I know it is well over $2500 that the signs raised, plus the Mary Gierke family donated over $1400 to our cause as well….Mary just recently passed away from colon cancer. I can’t put into words how touched I am to have others reach out and want to know how to help children with cancer.  

Motivates me to keep going.  She may be gone from this earth….but she will continue to make an impact.  I promise.  


Peace~

The Hawk

Life after this…..is everything we want it to be. 
At least we can tell ourselves that. 

Seen the hawk today. 

Miss you baby girl. 💔

You know that feeling of taking care of a toddler or infant? They have constant needs. So a good majority of your time is caring for them. Nurturing. Making sure they are safe. I spent almost fifteen years caring for another human. Daily needs and concerns. The sole decision makers for another persons life. Yeah. That’s cancer parents to a child. 

That has ended. Abruptly. Never to have back. 
And so I am lonely. 
My daily musings. A kind of therapy I guess. 
#cantrevealeverything
#missyouZ

Sometimes I wish…..

Sometimes I wish, that these Holidays could just be another day.  It’s funny, the meaning behind the Holidays often gets lost to “things”.  Honestly, Thanksgiving should be EVERY day.  We should be thankful every single day.  I try to focus each day on something good…..I guess it is my forever optimism.  I don’t need a Holiday to remind me of what I am thankful for.  

With that being said….the Holidays are extremely hard for me….should say us….Z loved them.  Every single holiday.  It was a way for her to (most of the time anyways) go to a gathering….enjoy friends and family.  Really, just another reason to party.  When she was little and going thru treatment, there were times when we didn’t think she would be able to participate due to her counts being low and risk for infection.  I think as she got older, she remembered those times and ALWAYS wanted to make the most of every day….or Holiday.  And oh how she loved to eat!!!  


Recently, Jason and I, and the girls went to San Francisco.  We had a great time…..much laughter and tears.  Zayla managed to send us numerous “signs” on our trip.  And we left her mark on several light poles.  


This was on Haight street.  We found an open parking spot and this is what it was in front of.  A “speakeasy” kind of bar, appropriately named ZamZam.  Hello Zayla Ann Mitsdarffer.  


And this picture we found while hiking through the Muir Redwood Woods…..we rounded a corner and seen this.  Took my breath away.  Miss you Z

Since our return from our trip I have been busy with my latest “Crafting for a Cure”.  I attended a craft show last weekend and raised over $300 for St. Jude’s and childhood cancer.  Since then, I have been taking orders for signs.  So far I am up to 85 orders and I have already sold 14!!  My goal was to make 100 of these….looks like I have done so!!!  I ran out of old picket fencing, but my brother has graciously offered to tear down his old shed with some amazing old wood to use….and it should help me complete my orders.  I am also very thankful to some awesome friends who helped last Sunday…..and hopefully the next couple Sundays to get these orders filled.  We will have raised $2500 for St. Jude’s once all 100 orders are filled.  That’s amazing!!  


I have been delaying sharing the hand casts that we received a couple months back from the Beazley’s. I guess my heart wanted to keep them for us…..kind of hoard them I guess.   They turned out amazing and I find myself at least once a day caressing Z’s hand.  They are so lifelike that I can almost imagine the warmth and sweat on them….Z always had warm and sweaty hands.  


Giving Tuesday is coming up….and if I could have just 5 of my friends/family choose Emily Beazley’s charity that would make my day!!  You can see their website at http://www.kuresforkids.org/

I have been given two pairs of LulaRoe holiday leggings that I am going to sell tickets to raffle off on FaceBook.  Each ticket will be $2, or 3 for $5.  All money raised will go to the Beazley’s and their kures for kids charity. 

I also wanted to share and thank the Kankakee County Sheriff’s, patrol and corrections for choosing Team Zayla Foundation for their No Shave November charitable donation!! Warms my heart to see the affect Ms Z has had!!! 


Finally, there have been many people who have reached out to us the past couple days, knowing how difficult the next month is going to be. This has been my experience the past month….

“The hardest part of child loss is that moment when our intelligence and emotions meet and understand—really understand—the finality of our loss. –Clara Hinton 

My heart and mind….both know. And understand. And it sucks. 

Miss you baby girl. 💔🎗💔

Passion 

Passion.  A thought that was discussed the other night.   

I think some of my passion has been stolen. Maybe that is why I have been “quiet”.  And focused.  

I know that some of my writing can seem. Raw.  Bitter.  Some may say “bitty” (replace with appropriate word).  At those points I think it is my passion.  Leaking out into words.  A way of expressing myself.  

Team Zayla is really about my amazing daughter.  Who is not here.  But remembered. 

To be remembered, you have to keep living.  Some days, we feel as if we are just here.  Just trying to survive without her.  But, you have to keep living to truly remember those you love.  Notice I say love and not loved.  Because I believe loved is not a past tense term when our love ones die.  IT continues forever.  At least that is what my heart says.  

In five days, Jason and I will be traveling to California with the two girls.  Our first trip.  Together.  Trying to keep living.  

That’s what she would want.  


Keep living…..

Miss you baby girl.  

6

6.

6 damn months of pain.  Of torture to my heart.

6. It was her favorite number.  It was the month AND day that she was born.

Now?? It is just an added painful reminder.  Of what my heart can barely understand.

I think the numbness is wearing off.  And the pain is excruciating.  But. Sprinkled amongst this unthinkable pain is ANGER.

I’m angry.  I’m angry that my daughter is not here.  With me.  I’m angry that another month has went by….and my heart wants to know what has changed??

So far this month, I have seen a local high school support the American Cancer Society with a Go Gold night for children with cancer.  Say what?? With no regard or care as to what ACS does for children.

I have learned about 3 more children diagnosed with cancer.  3!!!! And that makes me angry.  And it should make you angry as well.  Because what are we really doing??!?

I’m angry because this week is Homecoming.  Homecoming that my dear Zayla is not here to attend.  And oh, how she loved to get dressed up.  And socialize.

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And finally, I am angry to have to explain to an employee of a childhood cancer organization of WHY I do NOT support them anymore.  The NUMBERS should tell the story.  Let’s see them, shall we?

CureSearch 2015 numbers at a glance….

  • Revenue (what $$ brought in)                                               = $6,364,707
  • Fundraising Expenses(money it costs to raise money) =$2,010,460 (31.5%)
  • Salaries (what pay employees)                                              =$2,799,734 (43.9%)
  • Grants for Research (the cause)                                         =$2,231,363 (35%)

Alex’s Lemonade Stand Foundation 2014 numbers……

  • Revenue (what $$ brought in)                                              =$16,963,712
  • Fundraising Expenses ($$ it costs to raise $$)                 =$1,051,307 (6.1%)
  • Salaries (what pay employees)                                              =$2,254,300 (13.2%
  • Grants for Research (the cause)                                       =$14,377,305 (84.7%)

St. Baldrick’s 2014 numbers……

  • Revenue (what $$ brought in)                                             =$37,735,073
  • Fundraising Expenses ($$ it costs to raise $$)               =$6,975,825 (18.4%)
  • Salaries (what pay employees)                                            =$4,278,444 (11.3%)
  • Grants for Research/Programs (the cause)                  =$26,755,790 (70.9%)

As you can tell, I want to see MORE money for research.  Less money for salaries.  Less money for fundraising expenses.  The point of Childhood Cancer Awareness Month is not only to make people AWARE that children get cancer too….the hope is that with awareness will come research so that some day there will be a Forever Cure.  Because honestly, what’s the point of awareness without true change??  So please, do NOT hide behind your “good” feelings about an organization that this grieving cancer mom wants NO part of.  Talk is cheap….ACTION speaks volumes.

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Now, onto the GOOD….because I always want to finish my thoughts with goodness.

I am blessed that I have the strength and courage to keep pushing forward….thank you dear Zay.  WE have seen much goodness this past month….

  • Amazing turnout for our First Annual Bags Tourney….of which a portion of raised funds went to the Daily family and Abram’s hearing aid fund.

  • Donations from the CSW Dissension 4 for Childhood Cancer wrestling event- thanks Erik Olsen

  • Donations from Andy Cotter and his college friends from a summer golf outing

  • Limestone Middle School has a Heart of Gold and organized (in one week, amazing) a sale of gold ribbons with all proceeds to benefit childhood cancer research.

  • Upcoming this Saturday, October 1st is the Herscher Youth Football fundraiser for childhood cancer….at Sims Field in Herscher.  Come on out and support a great cause!!

  • And finally, the Herscher Volleyball team is hosting an event Tuesday October 4th, Go Gold for childhood cancer…there will be items for sale (thanks Jen Nevious).  I will be speaking before the Varsity game.  Prayers for additional strength is appreciated.

A month of Gold was nice….but it should really be all year long!!

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Miss you baby girl.

“All we ever do is all we knew, Time to wake up from this, Time to make up for it”