Wednesday, April 30, 2014

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.


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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Sunday, April 13, 2014

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 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.