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

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

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

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. 

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.

img_2150

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.

img_2151

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.

img_2145

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.

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.

img_2110

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.

img_2112

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.

img_2115

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.

img_2076

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.

img_2075

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.