The next chapter…..

on Thursday, I had a meeting for Zayla’s IEP for high school. High school, YIKES!! All of the support staff the last two years have been amazing. Zayla’s case manager last year was Roz. Zay was heart broken to leave her, BUT this years case manager, Laurie, WAS amazing as well….these people become such an integral part of her school life. They see all of her frustrations with her new learning disabilities and help her “try” to be her best. The meeting went really well, and we have some great ideas to help Zay get the best experience she can from high school.

Today, I want to share a little bit.  Share how childhood cancer, or in our new world, teen cancer, has changed our lives.

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Time. Time is a funny thing.  I still get excited and wish for certain events (vacations, concerts, parties, etc..), BUT….in a different way.  I often feel myself wishing for time to slooooow down, please.  Nothing new to most people, I’m sure.  I feel as if “borrowed time” is around every corner.  When discussing Zayla’s future in high school….it really was hard for me to look that far ahead.  Maybe it is the looming cancer. Always hovering over our thoughts and feelings. It is hurtful. We TRY to not let teen cancer control our lives.  But, let’s be honest.  It often does.

Time can also be peculiar when it comes to treatment and the growing independence of adolescents. When Zayla was much younger and battling cancer, it was actually easier.  Here you have a young child, that relies exclusively on you to make her decisions.  Often life altering and saving.  This time around it is much different.  Although I am beyond words happy to see Zay be the young teenager she is today….it is also followed by letting go.  Letting go of the control.  Sure, this is an issue with ALL teenagers.But, can you imagine letting go of the control when it comes to life saving measures???!?!?! It is hurtful. There are moments in Zayla’s life that she will voice that she is just plain tired and done with “it all”. Really can’t blame her.  We are coming up on two years of fighting brain cancer. *sigh* But it is our job to not only encourage her to be independent, but to also make informed and educated decisions for herself. For now, she is in the fight mode. But who is to say that this won’t change someday??

Change. So many things have changed over the past two years. Hell, really the last 10 years. Some good. Some surprising. And some not so good. I have been reminded in the past several weeks of how I have changed. Fellow cancer mom, Kathy, has voiced her displeasure of how people respond to her daughter’s new battle with a brain tumor. Her words are my words. Frustration with those who have stepped out of our lives. This is nothing new. Seen this the first go around with the leukemia diagnosis. The “know it all” advice….from people who I am sure mean well….but just don’t get it. It is hurtful. It can sometimes be relentless. Friends lost. Friends gained. Wonderful support, followed by loneliness.

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Loneliness is actually perpetual. Brought on by my own fears and disdain. It is hurtful.

And then there is the anger. I find that I am less tolerant of bullshit. Really, who has time for that? I want to surround myself and my sweet fighting girl with positive, supporting and loving people. I am selfish right now. If I don’t feel like participating in an event or with society. Then I don’t. Take it how you may. (Hence the perpetual loneliness). If you see me looking distant or not interested. Sorry, not sorry, I am probably not interested. I have A LOT on mind. If you can’t get that….oh well. I am constantly wavering between absolute HATRED for what my family is going through, to trying to find peace and joy. Don’t tell me that there is a purpose for this. Not sure I will every see that. And it’s hurtful. I mean really…..purpose in pain and misery for a child??!?!??

Last weekend, I had an idiot ask me, “So, what’s the prognosis?” Seriously??!?!? My response to him was my kid is NOT a statistic. Not a number. Perhaps I should have shared with him the percentage of asshole that he is. I didn’t. Must have been a good day. Note to all: Please don’t ask a parent what the prognosis for their child is. It is hurtful.

Yet, despite all the struggles, I still see good.  Zayla gearing up for her 8th grade promotion this Monday night.  She is attending various graduation parties.  I am grateful.  Grateful that she is able to participate in ALL of these things.  Seeing her excited about having bonfires at our house.  Planning and giggling.  For twenty bad things that can be had by this teen cancer…..I can get just one giggle or smile, and my heart melts.  I can still see the sunshine through these dark clouds.

I pray that those around Zayla can have patience and understanding.  And I pray for peace and normalcy for her.

Peace~

One comment

  1. Sara & Richard Samul · July 3, 2015

    Your family has been an amazing source of hope, happiness and wonder for us. We wish we lived closer so we could help more. But wearing our Team Zayla t-shirts on the west coast and spreading her courage. Thank you for sharing your amazing family with us!

    Like

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