Struggle is Real

This struggle is real. The journey is long. I'm imperfect and vulnerable.

I've been doing my best to be as candid as possible during this journey with Jace and his leukemia treatment, but it is proving to be harder and harder. And since I'm working through all of that it's best to do that here, in my own space. 

I will update on Jace's treatment and progress and all of the cool things he gets to do (Make A Wish & Kenna's Kids) on his Caring Bridge & FB later this week. So, if you follow there, be watching. 

But here I am working out everything on my heart and mind and trying to keep all of that separate for those that just want to hear about Jace. 

Here's some of what's been in my head lately: 

*Our struggle is definitely not as difficult as others' & they deserve more help/love than we do. 

*I don't want to be grateful in this moment. 

*I'm making a bigger/smaller deal of this journey than I should be.  

*I'm so much more than just "Super Jace's Mom." 

*Where do I belong now? 

This journey doesn't get easier.

 If you've been my friend BEFORE cancer then you know gratitude is at the heart of my spirit. 

This struggle is real. The journey is long. I'm imperfect and vulnerable. 

Earlier this week, the girls convinced me to take them to see the movie "The Fault in Our Stars." 

WHY? We are living this life and don't need to see someone else make it what it's not. 

Movies like this, that try to give other people a view into some kind of lifestyle, are typically FAR from reality. 

This one is not any different than the others. 

I'm sure there are some parts that triggered tears from those who have lived this cancer life. 

I was not one of them. 

Maybe it's because I've cried enough tears in the last few years over this journey to meet my movie-crying quota forever. 

Maybe it's because I've watched other families lose their children to cancer and saw how real and raw that pain is. 

Maybe it's because the reality of cancer was not what was staring back at me on the screen. 

Maybe it's because I know that Hollywood and most of the real world is afraid of seeing the reality cancer has on patients and families. It's easier to make everyone look pretty and have it all end in a neatly packaged, scripted 120 minute movie. 

Then, everyone can get up, walk away from the theatre and go back to living their lives with blinders on. 

That's easier. 

I get that. 

I get it. But I'm not living it.

This journey can do a number on your mind and heart and relationships. I've said before how isolating it is and how alone it makes you feel and it is still true. 

It's so much easier to just stay in our safe place all together than go out and try to be "normal." 

And while easier, we do our very best to continue to feel the fear and do it anyway. We know that God has given us this journey for a reason far bigger than we know. 

When I get tired of speaking or telling our story, I'm reminded that God wants us to share the struggles as well as the victories.

I'm reminded that I AM worthy of love and help. 

I'm reminded how being grateful in all things can change your heart even in the toughest times.

I'm humbled by His grace and how out of a thousand people if just one comes forward and says that our story or our faith has helped them in some way, that was His purpose. 

Thank you, Lord, for this day. 
I will rejoice and be glad in in it. 
I will not have a spirit of fear because I can do all things through Christ who strengthens me. 
I am anointed, highly favored and incredibly blessed. 
I will feel the fear and do it anyway. 
I will be a light bringer, an honor giver and I will make someone feel awesome, not awful. 
I was meant to serve, be thankful in all circumstances and elevate my thinking, being and doing and I will do that today. 
Amen. 

PTS and Childhood Cancer

**Note: I wanted to add that because these 2 things aren't researched or TALKED About much, even to us, the stages of trauma with any chronic illness is probably different along the way. I'm only writing from our perspective now.

First off, I just want to say that if you've never gone through cancer treatment (or another chronic illness) with your child AND have never had a true anxiety attack, you just can't know how they both impact daily life. 

I've been through traumatic stuff in my life before and I've struggled with a little anxiety off and on. 

I've learned how to cope with it and found what works best for me: 

*working out

*praying

*reading

*surrounding myself with positive, uplifting people

*scheduling time alone

*careful planning of my day
*not a lot of noise and crowds

When we first started on this journey I began doing my own research about links between Post Traumatic Stress and Childhood Cancer. There's not a lot out there, but everything I found revealed that it is real. 

I've blogged before (here and here) about anxiety and how we are seeing it present itself more and more in our lives so many days after the initial panic-cancer-is-here-why-did-this-happen phase. 

However, nothing

NOTHING

NOTHING

prepared me for what I experienced earlier this week. 

I've noted before that after long periods away from the clinic we've seen anxieties in both Jace and the girls. We've also felt them ourselves. 

We knew that Wednesday was going to be long and we'd have to get into our "zone" to get through it. 

About a day before treatment, there is always a mist of anxiety blanketed over all of us. 

The thing is everyone (almost everyone) thinks all is pretty much back to normal or at least routine now that we only go in once a month. 

Maddie has said her friends struggle with understanding why it's all still even a deal at all. 

Avery usually wears her heart on her sleeve so anyone around her knows this topic makes her sensitivity heightened. 

Jace seems to cry more easily about small things. He is more clingy. His appetite is almost zero ( some par for the course). 

Jason and I usually cope in our own ways. Extra workouts, extra prayers.....

Yesterday started off normal enough. Nothing big happened. Looking back and reflecting, I know I didn't make enough time to read my daily devotional, didn't play Air1 while getting ready, didn't arm myself like I typically do. These are small intentional things I do, and now I know they really DO help! 

I got to my meeting and tried to balance myself. (note: Didn't stop at my office to breathe, check email, or acclimate myself like normal.) 

I started reading email and realized sweet Avery was getting an award and because it was Wednesday we wouldn't be able to see that. 

This Wednesday meant a lumbar puncture, ivig infusion, benadryl, tylenol, and a pentam breathing treatment. 

That triggered how much I hate cancer and chemo and how many moments it has tried to steal in 485 days. 

Then, the words "Maybe one of you can go with Jace and the other can stay here with Avery." (no. just no. both of us like being there when we can because we know it will be a long day and the toll on us will be less if we are together)

All of that happened in a 2 minute time span as my heart was racing, I couldn't breathe, I started sweating, and feeling like I was going to pass out. 

I needed to run! 

I gathered my things and barely made it back to my office before I just lost it. 

There was no warning. No insight that there would even be a trigger.

You can't plan that. I can pray and pray for those attacks to be alleviated or completely gone, but in that moment all I could do was breathe and escape. 

Everyone is full of advice about anxiety, but it's not as easy as being grateful, relaxing,  breathing or praying. You KNOW I'm already doing all of that. Anyone who has experienced a true attack, then you know if it were that easy you'd not be having them. 

Here's the article I posted (thanks, Candi!) on the last blog about PTS and #childhoodcancer: (http://bit.ly/1nS6JGy)

Be aware that those you know fighting an already difficult battle are also dealing with this. Are they dealing with ALL of that? Probably not. But PTS is REAL. 

*Note: This video is only to show the daily struggles of simple things we took for granted before. Taking off his band aids can sometimes take at least 30 minutes because he doesn't want us to touch them and he doesn't like the sound they make coming off. 

We've noticed changes in Jace's fears and his need for a sense of constant security and consistency. Any small change triggers immediate fear and anxiety for him and I've learned how to read his cues. 


For me, here are some things that have changed: 

I find that I want to avoid crowds more than before. 

I find more comfort in one-on-one situations instead. 

I would rather stay home than go out. 

Trusting people is harder than before. 

^^^^

All of that is not gonna help me grow and I KNOW this. I'm growing through it and super in-tune with what helps. 

After sharing about my anxiety attack on FB, my sweet friend, 

Sherry said "It's refreshing to know you're human." 

I am HUMAN. You just don't know how human I am. 

*Pull up a chair and pour some coffee*

I'll keep sharing my journey with all of it's struggles, victories, laughter and tears because I know someone else out there needs to hear they are not alone and it's ok to be vulnerable. 

I'll keep doing the thing I know works for me: praying and writing. 

I should be doing all of that anyway. :) 

Reckless, Fearless, Courageous

Faith. 

It's one of my favorite words. I even used it to name the sweet middle child. And her faith - it's like she was drenched in deep, genuine faith. 

Since I can remember I've always had faith. Some of my darkest days were lit up by a twinkle of faith, hope. . . .

These days faith is a decision we have to make over and over and over daily. 

On day 1 of this cancer journey, we started off strong. We believed. We prayed prayers of victory. Then, the journey got longer and looking back we know that our foundation of faith was the only thing getting us through. We did a lot of work in turning over the small things to God so we knew that turning over the bigger things would work out, too. 

We are in the middle of this long marathon. Day 485 to be exact. The longer you are in a storm the harder it is to stay on course even when you know your consistency is what will help you prevail. 

Today, on day 485, I can tell you that post traumatic stress is real. (http://bit.ly/1nS6JGy)

Today, on day 485, I can tell you that  I have had many more valleys than I expected. 

Today, on day 485, I can tell you that I have to decide daily to lean on faith and not sight. 

Today, on day 485, I can tell you that our walk in faith is not easy. 

Today, on day 485, I can tell you that we are grateful still. 

Today, on day 485, I can tell you that I'm vowing to myself to have a reckless, fearless, courageous faith every single day that I wake up - no matter what tries to knock me down. 

Fly

I'm not enough. 
I'm not worthy. 
I'm not pretty enough.
I'm not skinny enough. 
I'm not rich enough. 
I'm not valuable. 
I'm not significant. 
I'm not good enough. 
I'm not polished enough. 


Last week, I had to do something that re-opened a wound that I still have difficulty letting go of after many, many, many years. This wound has a way of taking me to the root of all of my pain and rehashing it all out over and over. By the time the week was over, I was unsure of everything I knew.  

Because Sunday started my week off in pain, I had difficulty just getting through the week. 

Getting up and getting motivated was hard. Wednesday was especially hard. This leukemia journey with Jace is long. There's not much else to say. To everyone he looks great. He has his hair back and runs with boundless energy. This IS a victory. 

As we drove home Sunday afternoon, we listened to a sermon that spoke directly to me. 

Everyone knows the story of David and Goliath. Everyone knows it ends in Victory. But not everyone knows about "the grind" behind the story. 

David is hands-down my favorite character in the Bible. He wasn't perfect, but he was raw, honest, deep and faithful. I love his acute awareness for God and his need for God in his life. 

Monday, I started the week feeling tired of the grind and ready to just give up. 

The week didn't get easier, but by Thursday my sweet husband had paid for me to go to our church's women's conference. I, truthfully, had to force myself to go. I was not in the mood for much of anything, but I sat as a woman talked to me about patience as God places us in an environment to receive what God will give us. 

Patience. 

OK, God. I'm listening. 

The next night I sat as a women repeated me to me all of the things I had been telling myself. All of the first things you read when you first opened this entry. 

She immediately pointed us to Galatians 6:3. 

Boom. In your face, Tisha. 

"If anyone thinks they are something when they are not, they deceive themselves."

For weeks, I've been discouraged and tired of sharing my/our story. I'm out of words. I don't feel worthy enough to share. I don't feel polished enough to speak to people about it. I'm tired of "being inspiring." I've been on my knees begging for a break from "the grind." 

And then I heard an angel (who is also named Natalie) speak directly to me: "Share your story. Speak your truth. You were saved to save. You were blessed to bless. You were loved to love. There are people only you can reach." 

Boom. Again. 

Ok, God. I'm willing. I will stop deceiving myself. I will look past myself in order to go out in the world and grab what you have for me. I hear You.

The grind is tiring. The grind isn't easy. It's always harder when you get deep into the middle of it all. It never looks that hard when you start out and it always looks easier to those watching you.  I'm not trying to be inspiring most days. I'm just trying to get up and be sure the kids are taken care of and that we all eat and get enough sleep. My faith is solid, but just because of that doesn't mean I'm signed up for an easy life. 

Seven days ago I was in a much different place than I am in today. 

I'm listening. I'm stepping aside to let God in my boat because even if it's sinking, HE is there to carry me above the waves. 


I'm leaning into willingness. 
I'm leaning into prayer. 
I'm leaning into the word. 
I'm leaning into gratitude. 
I'm leaning into forgiveness. 
I'm leaning into praise. 
I'm leaning into His grace. 
I'm leaning into His love. 

I'm dropping all of the deceiving things I've been telling myself right at the feet of Jesus. He doesn't want me carrying those things around anyway. He didn't create me to be those things. He wants me just as I am. He wants me to embrace me so that I can fly the way He always intended. 

xoxox

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Yellow Wednesdays, Operation Love, Pudge Rodriguez & FI8HT

A little bit of everything today: 

Find a Yellow shirt to wear for #yellowWednesdays and #childhoodcancerawareness! Help us and join us in bringing as much as awareness for children as #pink for #breastcancerawareness! Be ready to use the hashtags so we can see your photos of YELLOW! 

Operation Love has a new drive going! May 5-9 drop off your small items at Celina HS! Many students are helping with this drive so we can take more care bags to caregivers at Children's Hospital and Cook's Children's! For more info visit our page: Operation Love 

Jace and Pudge Rodriguez

Jace had a busy day yesterday! He was able to go to the Frisco Roughrider's game and hang out with Pudge Rodriguez! Pudge and the RR were awesome! A big thanks to Sherry Hale for getting us out there and to Pudge, the RR's and Dawn Nuefeld for being amazing during Jace's time as honorary hero for Silver Dollar at the Ranch. The event is May 17th! Please visit their website to purchase tickets and join us for a night of fun and giving! 

Jace, Pudge, Rough Riders, Dawn

Jace, Tisha, Dawn

Lastly, Jace is the weekly warrior of FI8HT, an amazing company bringing awareness to those around them! We happened to find Fi8HT on Etsy and ordered Jace a "Little Fighter" shirt. He loved it so much and it reflected how we felt about his journey. Now they are featuring a weekly warrior and that warrior gets to pick a charity of their choice! For every order that comes in this week, $7 will go to our favorite organization, Peach's Neet Feet. Please visit their website and order for those little fighters you know (cancer, autism, diabetes): www.fi8ht.com

Big love and thanks for ALL of your support out there! Together we will find a cure and create awareness so that no one can look away! 

Worry --Joy

5:00 AM - I woke up overwhelmed with worry. I couldn't go back to sleep. 
5:30 AM - After 30 minutes of talking to God and repeating scripture in my head, I snuggled up to Jason and just cried, then we prayed together. 
6:00 AM- I decided to just simply ask for prayer on FB and twitter. 

Wednesdays are always big days for us. It use to be every Wednesday. Now it's just a few Wednesdays a month. They DO become routine in our minds, but actually going through them is a different story. I mentally start preparing the day before which makes it hard to concentrate on anything else.

There's nothing routine about your child having to have chemo, a lumbar puncture, or stay in a clinic for most of the day. 

I DO worry about a multitude of things, but usually only for a millisecond until I redirect my thought process. 

This morning was different. I knew last night that anxieties were high around our house. They always are when Jace goes in for a big day, even in maintenance. My instinct was to let Avery miss school and go with us. I had no idea why. 

This morning was different. I don't wake up often with such heavy worry surrounding me, but it was engulfing me so that I woke up because of it. 

SO I stopped and sent out this specific prayer request:

Specific prayer for Jason & I today: for the worries we have (finances, girls, jobs, this day with Jace) to be overtaken by complete faith and trust. This struggle is real and I have no doubt we are being molded for something else, but YOUR prayers and HIS grace sustain us and hold us up. #gratitude

By 6:30, I began feeling better and feeling like I could get up and tackle whatever was in store. We did let Avery miss school and go with us. She has a spirit that calms Jace and makes him do things with more ease - like putting on numbing cream on the places that will be "poked" or going back to the "sleepy room." She is such a warrior herself because the things we did today, however "routine," are still difficult to just watch from the sidelines. She learned what a lumbar puncture is and why we do them and how cancer cells like to "hide" out around the spinal cord. 

That alone could keep me in a place of worry.

BUT

Just like He always has, God took our worries and transformed them into JOY. 

A great friend dropped off lunch for us after her bible study. 

We got to see our Children's Legacy family - ALL of them: nurses, drs, families, patients!

We laughed A LOT today. 

We had some divine appointments that we know God had all planned out. 

We had Operation Love bags delivered to Dallas today! 

We were contacted by some amazing people for some small, yet amazing opportunities. 

Those opportunities are just reminders to us that God has a MUCH bigger plan for us than we have for ourselves. 

MANY, MANY of you are praying for us and lifting our family up. 

We decided to try to start a BIG movement called #yellowWednesdays for #childhoodcancerawareness. (we hope you will join us to support all the families affected!)

Pete Delkus and John McCaa  (WFAA8) RT our tweet about #yellowWednesdays! 

We had a carpet picnic dinner and watched The Middle (our favorite family show). 

Pete Delkus briefly talked about Jace and our family during the 5 pm news on WFAA. (we missed it) 

We heard that the last line of that broadcast was "NOTHING IS IMPOSSIBLE!" 

This morning I woke up with overwhelming worry. 

Tonight, I sign off and go to bed with overwhelming joy.

Friends supporting Super Jace!
(including Jody Dean, Pete Delkus, John McCaa)

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The Arena

15 months have gone by. 15 months. 

It all seems surreal. I've blogged about it on Caring Bridge and Jace's Facebook page for almost that long. I always hope to be able to give people a small honest glimpse into our lives now. 

One day I'll go back and read and compile it all. One day . . . 

My updates are fewer and farther between these days. It seems that I have less and less to say. 

Actually, I have a lot (A LOT) going on in my head almost 24 hours a day, but I'm finding more and more that I'm not willing to share that with many. 

Jace is doing well on his treatment. And that IS a victory. We ARE so thankful. 

However, because he "seems fine" to everyone else, it's easy for them to think that we have no worries or stresses and life should be "business as usual" now. 

Any cancer family will tell you, "Doctors have NEVER said there is a 100% cure rate."  (leukemia is 85%)  Let that sink in for a bit. Jace is doing well, but we are still on this journey and at any moment we know life could change again. As a parent who has watched their child go through things even adults haven't experienced, that 15% is always just over our shoulder. Borrow trouble from tomorrow you say? Well, keep reading, I cover comments like that below. 

It's very difficult to explain. I'm only speaking for our family, so I am not sure if it's just us or if others feel the same way. 

The longer we are on this journey the further away everyone else seems. 

I've watched people walk in these shoes prior and noticed that same "withdrawl" for lack of a better word. I always wondered about it and wished that I could just make it all better for them. Now, I know, it's not that simple. 

Jason and I have our small circle of friends who we confide in and who are credited with keeping us "afloat" in the ocean we are in at the moment. But to be honest, those I trusted before and confided in have proven not to be as trustworthy or "on our side" as we first thought. And then that creates lack of trust with almost everyone. 

As things around us change, (jobs, relationships, circumstances) we continue to struggle with what my friend and fellow cancer mom, Candi, calls the "behind the scenes." 

It's all of the things other people just can't know. 

At first I thought I'd try to write it all out, but I found that the photo I created says it best. There are many, many, many things deep below the surface of what everyone else knows or sees of us. These are things you most likely won't hear us talking about, but every.single.day all of us are struggling through at least one of them and usually more than one at a time.  

^ ^ ^ See that bottom part? That's the valley we are in now. That's the place I'm writing you from. That's the place that most families are truly living. 

One of the biggest things I, personally, struggle with is learning to disregard feedback from others. I know many of my fellow warrior moms and many of the warrior women who have struggled the cancer journey will understand this. We know those that say things, typically, mean well, but their comments are not usually helpful. 

 Many "spectators" seem to have judgements and opinions swirling around all the time: 

(these are not all my experiences, but some I've heard along the way)

*They had another baby?!
*If they can't completely do their job and take care of their treatment, then they don't need to be working.
*Why do they have to pick up their child if someone in the class has fever? What's the big deal? They were already exposed! 
*How dare they spend money on anything else except insurance or medical bills!
*Why is she not the friend she was before? 
*They are fine. Leukemia has an 85% cure rate. I know tons of people who had leukemia and are now adults.
*Well, at least you get to quit your job and be a stay at home mom now. I'm so jealous. 
*Isn't his treatment over yet? How much longer?!

Here's the bottom line and author Brene Brown has no idea of the power of this statement but for me this is my response to all of THOSE comments: 

If you've never watched your child battle cancer....
If you've never been in THIS arena....

If you're not getting your ass kicked by this journey, your feedback is not needed. 

Our family, childhood cancer families, all cancer families - they need love, understanding, patience, support, and prayers in a feedback free zone.