Wednesday, March 12, 2014

Behind Closed Doors

It's been a few weeks since I've blogged. The last post "Unapologetic" had a lot more response than I expected. I got messages from so many people, comments, and emails came through from many of you who "get it." Or many of you who couldn't believe that people would actually be nasty and negative during an already exhausting journey. 

You can rest assured that I am not angry. I wasn't angry for very long, but as a "mama bear" when I hear what people have been saying to my girls, well, that's another version of Tisha that you'll see. 

Moving on. . . 

The last month has been a struggle. A struggle is an understatement even as we know the struggle IS worth it. Honestly, in this moment of this journey, when most everyone has disappeared, stopped interacting with us, stopped daily reading, this is the hardest. 

I knew this, though. 

Many of you know that I've been down this type of journey before. Losing a young brother at a young age, I saw a lot more and learned a lot more than I wanted to about grief, tragedy, emotional trauma, and people. 

My heart has always ached for those going through grief. I've always had a nudge in my heart to help people like me. 

I didn't expect this journey to feel the same and it does. I knew I would feel vulnerable, just as I did before, but this time I'm so much more aware of it all. 

So often people will comment "You're one day closer to the end!" 

Nope. Anyone who has gone through any trauma in their lives knows that is a myth. 

There is no end. This doesn't just stop. Chemo continues for another 1 1/2 years. So, yeah, that'll be over, but to say THIS will be over. Nope. 

I've been doing some research on this and have learned that many who have gone through this cancer journey also have to overcome what many deal with as post traumatic stress disorder. I've never really tied the two together, but an amazing conversation with 2 amazing women who've also experienced loss pointed it out to me. 

There will always be anxiety about dr appointments, blood tests, simple illnesses....We will always feel the need to "look over our shoulder" in a sense. 

We will always be working through the emotional trauma of all of this. 

What I know now after a LOT of talks with our 13 year old is this: Not everyone will be able to handle being our friend. Not everyone will want to. It's a heavy load to be a friend during this heavy time. Don't hold it against them. Just know that God will bring to you who He knows you need in the exact time you need it. 




#AWARENESS 

{Our day yesterday}

Picnic Day. 

Jace: What's a picnic? 

Yep. It's been that long since we've gone on one. 

After we pulled into the parking space at a pretty cool park, Jace looked around and said "Can we go somewhere with less people? It's so crowded. It scares me." 

Once at the smaller park with no people, we eat. I can see the anxiety on his face. He even says, "Are you sure this is a good idea?" 

We eat, clean up and the girls shriek in delight to go play. 

"Mama, I don't want to to do that. I'll fall."
"I don't want to swing again, It scares me."

My heart drops. He's missed out on so much and this has affected more than just his body. Lord, please give me the wisdom and tools to be able to help these little people through all of this BIG stuff. 

It's already been a long steroid week. His food of choice = Chick Fil A. 15 miles away one way. 

Though, the month has already been better than the last (catch up here www.facebook.com/graceforjace), it's still not easy. Being "alert" every second of every day is exhausting for all of us. 

He yells more. He hits more. He sleeps less. His outbursts cannot be predicted which means we are very strategic about where we go and what we do. 

Steroid week usually means he wants Jason at night to sleep with him (on the floor) and during the day it's me or Avery that he insists on having at his beck and call. 

All the while, we remind ourselves -- it's the steroids. 

So, we pack up to go to our next stop. The girls had been excited about a thrift store visit.
We went in and their faces already seemed defeated. 

5 minutes in and Jace started crying that his feet hurt and he needed to be carried. So, we load up to leave. 

These are the moments no one knows about. The pull as a mom on the one hand wanting to make the week break fun for the girls and the other pull as a mom to get Jace through this week - again. The stress on siblings having to change what they want to do at a moment's notice. 

We drive home in silence. Jace gets angry. More silence. We all know we are at the end of our rope. 

Thankfully, Maddie had a sleepover. We dropped her off. Jace was mad about that, too. 

We got home and collapsed. 

Before the night is over, I think of a way to redeem some time with Avery. So, we head off to the store alone. We have a great time shopping and laughing. The drive home is hysterical as it always is with her. 

Then. 

The call. Jason: Jace has a fever. Again. 

The unspoken rules fall into play. The laughter stops. Plans have to be made just in case. Packing has to start just in case. 

This is our life. Everyday. 

"It's scary, mama, when Jace has a fever or is sick. It scares me when he has to go to the hospital or clinic. We always have to be separated and pack and don't know what's going to happen. It's hard doing this journey. " 

How I ended my night was rocking my girl who was crying through her words. 

Over? It has never once stopped. 

Neither has our love for each other or for him. It never will.