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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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.

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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.

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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.

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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.

Not going to bring us down…..

did not get the results we were hoping for on the more detailed MRI. Appears that there are some nasty cancer cells trying to start the tumor shit show. No chemo this week. We are reconvening and with other specialists to devise a new plan of action. Will hopefully have a better idea by early next week. While this news was not what we wanted to hear…..we are NOT going to let this news bring us down.

So today….we are going to play in the sun. Screw you cancer!

This past weekend Zayla was able to do a small Bear Hug from Bear Necessities. She chose to attend the Dave Mathews Band concert at Alpine Valley. We had an amazing time (minus lots of drunk kids around us). Making memories. That is what our focus is. Always making memories.


     I do have one request from all of Zayla’s friends…..please, please, please start including her more in your lives.  Even if it is a simple text now and then…..this girl NEEDS the support!!!  And unfortunately we have seen less and less of many friends…..The support that Zayla received when she was first diagnosed….and the next year really….was awe inspiring.  We can not thank everyone enough for all of the LOVE and SUPPORT that has been shown. zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

One of the trials that we have been discussing with Zayla’s medical team is using Immunotherapy and antibodies to attack her tumor.  I really and truly believe that the way of a cure for our girl will be through innovative treatments such as immunotherapy.  We want a Forever Cure!!!  I have decided to start training for the Disney Glass Slipper in February 2016.  I have chosen Noah’s Light Foundation to be who we will raise money for.  This organization uses ALL of their money to fund innovative cures for brain cancer…such as immunotherapy.  Please consider donating or joining us…..

https://www.noahslightfoundation.org/donate/?page=CiviCRM&q=civicrm%2Fpcp%2Finfo&reset=1&id=651

Go make memories folks…..

Peace~