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. ūüíĒūüéóūüíĒ

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.

img_8398

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.

img_1311

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!!

img_2206

Miss you baby girl.

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

 

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”.

img_2170

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~

img_8567

“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.

img_2035

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.

IMG_6786

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.

img_8176

Today I was home to watch……

Today I was home to watch the bus not stop at my house.  It really fucking sucks.  

Hadn’t really realized til today that I have been avoiding that moment.  Ugh.

Today’s weather reminds me of when the kids were little.  Doors open.  Windows open…..and this nice country breeze making obsolete papers blow around in my house.  And then that damn bus drove right past.  Didn’t even stop.  


And my heart hurts again.  But just for that moment I was back in time.  

This past weekend was the AshleyCan half marathon/5K/Walk.  I couldn’t bring myself to go.  It was just one of those days…..where the memory hurts too damn much.  

Big THANK YOU to the Herscher High School volleyball team and the KCC volleyball team for volunteering their Sunday morning to help….I LOVE seeing our youth do non-selfish things.  That’s what our news feeds should be filled with.  Outpouring of love.  All the time.  


Today I had lunch with a friend.  A hurting friend.  And I know how she feels.  Childhood cancer is NOT just in the month of September.  It is the families’ battling every day thought.  No escape.  Even if they “seem” healthy.  On the mend.  Internally, shit is fucked up.  We know it as PTSD.  The many jacked up faces of childhood cancer.  

We both had curious thoughts tho…..it “seems” that those who have came before are silent now.  That the masses of survivors and their families are no longer visible.  Is it because they are cured and don’t want this reminder? I had an epiphany…..I believe they are in their own hell….trying to live as normal as possible.  Because truly….how can you ever “unknow” the reality of childhood cancer.  That’s what it is.  


A local boy who just recently got off treatment has a side effect from treatment…..he is going deaf.  Not a surprise really….that is just one of the many things you may get as a parting gift from cancer treatment.  Truly jacked up.  But the thing is, there are MANY kids who do not leave treatment “unscathed”.   Actually it seems to be the norm.  Of course the shitty side effect that Zay got eventually killed her….we need to be questioning why is it ok for children to be tracked for only five years post treatment??  The “good” statistics that we see for childhood cancer survival is ONLY tracked for 5 years post original diagnosis.  Five years?!?!?!? I bet, if we looked at more detail numbers of kids dying from a secondary cancer OR children with massive amounts of “side effects” such as the boy I was speaking….we would not be looking at childhood cancer the same way.  

But I digress.  

Today, Team Zayla decided to help that local boy get his hearing aids.  We donated $1000 to go toward the purchase.  I know that additional donations would be greatly appreciated.  This weekend there is a running event for this boy to help raise money for ambulance fees…..whatever is above the goal is going to go toward the hearing aids for him.  This child may be done with treatment…..but he still has a LONG road ahead of him.  Numerous doctor appointments, hearing aids, physical therapy due to treatment affects.  You don’t have to be a runner…..you can stop by and just donate the day of the race.  https://www.racerpal.com/races/abraham.html

This Saturday September 17 10am-2pm.

Jogging for Abraham Daily 5K/2 mile walk.

McBroom Park S 8th Avenue Kankakee   

I am also going to get crafty again this pre Christmas season…..not going to do wine bottles like last year.  Think I have a new “idea”.  Last year $700 went to St Baldricks from all the crafty stuff I made…..keeping busy is good for my soul, but sometimes drives my husband crazy.  It is what it is. 

Miss you baby girl.

“Don’t get lost between your needs and wants.”

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??

img_8567

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.

img_0405

My heart is full…..

My heart is full……in all the broken places by all the love and support shown this past weekend.  


The 1st Annual Team Zayla bags tournament was a HUGE success…..thanks to ALL the friends and family who donated time, money and most importantly HOPE, into us pushing forward with our Memorial events for Zay.  We were so incredibly pleased with the amount of people who came out Saturday.  Thank you for letting our daughter live on in all the hearts of you…..

There were 64 individuals that played Saturday…..and there was over $1000 donated by others who came, but did not play.  We raised $2700!!!!  That is amazing.  A portion of the raised money will go toward Zayla’s culinary scholarship fund.  Another portion will go to childhood cancer research (we love St Baldrick’s….they recently donated $500,000 to University of Chicago Comer’s for secondary cancer research in children…..it was like it was meant for Zay!!! Because cancer treatment shouldn’t give you another damn cancer!! ) And a third portion of our fundraising efforts this weekend will go to local families in the form of gas cards, parking stickers, grocery cards, etc….. Because we KNOW how helpful these items are to families faced with childhood cancer.  


The balloon release (thanks Julie and all the kids) was an added bonus that I had to stand back and quietly  absorb.  I often forget that others are hurting by the loss of Zayla…..probably because I am so consumed by my own grief…..but it was nice to see the kids be able to express their feelings.  Each kid wrote on a card to Zay, then tied it to the balloon to send to her.  Such a loving gesture.  


These fine teenagers spent the day chasing and entertaining the numerous younger children that were here with their parents….. Our community is amazing….and there really are some GREAT young people in it.  I believe we focus too much on all the “bad things” that happens in our world.  I am so grateful to get a glimpse of all the good that happens.  Like I said….my broken heart is getting filled with the love shown from others. 

Two classmates of Zayla’s, Grant Wenzelmen and Nic Rink, participated in the bag tournament Saturday.  Now these boys were really good!!  So good that they WON the tournament.  Thing is…..there goodness wasn’t just on how well they played.  The first place prize money ended up being $750…..these amazing young men didn’t think twice and refused the prize money. 


Thank you to all who came out, played, donated, and/or thought of us from afar…..we even had donations out of state mailed to us….thank you!!!!!  Next event will be in March…..the 3rd Annual Poker Tournament.  Stay tuned!!

As for us?? It was bittersweet yesterday……we didn’t attend the annual parade in Herscher.  First time in over 15 years.  It was always Zayla’s favorite thing…..she especially enjoyed it when we would do a float for Childhood Cancer.  We just didn’t have the heart to do it this year…..maybe next year.  

Not attending the parade yesterday reminded me of a story.  Zayla was just released from the hospital for her bone marrow transplant (circa 2007)….she was only 6 years old and had been inpatient for over 2 months.  She should have been attending 1st grade, but she was not allowed to go in public due to her recent transplant.  So instead, we went to the parade and watched in our SUV.  Here is this pudgy steroid faced bald little girl trying to watch a parade in the sweltering heat…..that’s just how she rolled.  Nothing would stop her.  And although she couldn’t participate in the Princess float…..or sit with the crowd to collect candy with all the other kids…..she made the best of it by watching through the windshield of the car.  And all with a smile on her face.  Need to live more like Zayla….

‚Äč‚Äč
I’m sure you had the best seat to watch the parade yesterday…..

Miss you baby girl. 

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. 

Memories…..

Memories…..generally good. ¬†But sometimes so hurtful.

I have been having an internal struggle with looking at my Facebook “On This Day” posts. ¬†Although the unexpected pictures of Zayla are sometimes what my soul needs to see…..it is the rantings that sting.

img_1322

Three years ago today, I posted about childhood cancer support.

Here it is:

The National Cancer Institute spends 4% (actually 3.8%, but whatever) of its revenue on research for ALL childhood cancers.  Combined. 

Sounds generous when you consider that less than 1 percent of cancers, occurs in children. Right? However. ¬†NOT when you take into account that the average age of a childhood cancer diagnosis is 6; in adults it is 67 years old. ¬†When cancer kills, an average 15 years of life is lost in adults, vs. 71 years in children. ¬†(Zayla lost 68 years of life….68!!!!!!!! WTF?!?!) That’s decades for children to “grow up, have children of their own, create something beautiful, or even discover a cure for cancer”. ¬†****Addendum—¬†Don’t get me wrong…..all life is valuable. ¬†I just find it absurd that we want to compare the number of affected cancer children to how much funding they should receive. ¬†You want to compare numbers?? ¬†Then look at amount of years saved. ¬†That makes more sense. ¬†********

Among pharmaceutical companies, that 4 % slither of the drug discovery and development funding pie might be even skimpier.  BigPharma needs BIG profits that they can only get from the remunerative adult market.

When reporters cover fatal accidents or disasters, it’s commonplace to identify the number of child victims (“200 people died, including 28 children”). That’s because most of us place a higher value on a child’s life than an adult one. ¬†The NCI and BigPharma do not appear to concur.

IMG_8168

Today???? It has been five months. ¬†5 months or 5 minutes. ¬†Feels the same. ¬†Yet so different…..

Miss you baby girl.