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

I have contributed to……

…..Slacktivism.  What is slacktivism??  It is the illusion that you are helping a charity or cause in some way by performing a task that is easy and that requires no real sacrifice in either time or money.  What the real problem of slacktivism is…..it leads the person to believe they have genuinely carried out a charitable act…..which can lead to the person less likely to follow up this act with an actual charitable act.  (Taken from the website thatsnonsense.com ).

What does this all mean?!??!?  In the world of social media I am guilty of asking all of my ‘friends” to Go Gold for Childhood Cancer Awareness Month.  Many, many, many of you have done so.  And we all get a warm and fuzzy feeling inside that we are actually DOING something.  Reality? Not much is really being done.  And I am guilty.

What can you DO???  Take ACTION!!  Donate.  Join us in the Walk to Remember and Honor Saturday September 12th in Bourbonnais, thanks to the AshleyCan Pediatric Cancer Foundation. Go here to register: http://www.active.com/bourbonnais-il/walking/races/ashleycan-pediatric-cancer-foundation-a-walk-to-remember-and-honor-2015

IMG_8178

Do you want to know what a donation or participation to AshleyCan gives you???  A non-profit organization that truly IS non-profit.  There are no salaries to Presidents or CEO’s.  Can the American Cancer Society say that?  Nope.  How about the Susan G. Komen?  Nope.  In actuality, 95% of all non-profit organizations can NOT say that they do NOT pay their CEO’s or workers.  I’m confused.  I guess I just don’t understand properly what the term non-profit means. Because someone is profiting off these organizations.  AshleyCan Foundation gives to cancer families in need.  Do you realize the impact financially to a childhood cancer family??  It is devastating.  And truly, that should be the last thing families have to worry about…..money and bills.

IMG_8160

May I also suggest others way to take ACTION???  How about donating to a reputable organization.  Here are my suggestions:  St. Baldrick’s, Alex’s Lemonade Stand, St. Jude’s, and Noah’s Light Foundation.  The last one is close to my heart.  Noah’s Light Foundation is specifically raising money for research to cure pediatric brain cancer……in ways that are innovative and new.  I am going to be participating in the Disney Glass Slipper run in February 2016, and I am participating for Noah’s Light Foundation.  Please consider donating at https://www.noahslightfoundation.org/donate/?page=CiviCRM&q=civicrm%2Fpcp%2Finfo&reset=1&id=651

IMG_8168

I also want to suggest that I realize many people do not have the resources to donate.  How about donating your time?  Sign up and do an Alex’s Lemonade Stand at a local store.  Ask your schools what are they doing to help find a cure for children fighting cancer.  Ask your communities to go the extra step.  And continue to share the Gold.  The more Gold we see, the more Awareness our kids get.  Talk about childhood cancer to anyone and everyone.

IMG_8180

Finally, we are still awaiting what is the next plan for our sweet girl.  Lurie’s Childhren’s Hospital in Chicago will be our new treatment place….we are just awaiting their review of Zayla’s medical history and MRI scans.  It has been almost two months since Zayla has had any treatment.  This gives me mixed feelings.  I am grateful to see her feeling so good.  Going to school everyday.  Feeling normal.  Doing normal teenager stuff.  On the other hand, I am worried.  We have gone almost two months of not fighting this beast.  I want answers.  I want action.  I want a forever cure for my girl.  Is that too much to ask for????

Take on the day…..Go Gold….and do something for the kids fighting cancer.

Peace~