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. 

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. 

Finding the Normal

The last few weeks have been a lot of "finding our new normal." It's definitely not easy. I have written about our journey the past year with Jace, mostly, on his CaringBridge. (You can always visit there if you're scrapped for reading material. HA!) 

Now, we don't have much to write about day to day with his treatment. Now, we go from living at the clinic and hospital to being home and doing our normal "stuff." 

Cancer and treatment has been a big part of our last year, but the normal stuff keeps us grounded and balanced! 

So, here's what we've been up to: 

Jace and the girls are back to school after a WONDERFUL holiday. He's been doing a GREAT job lately with just all the normal stuff. Here he is this week showing off his new car aka prize! 

Did you need a daily dose of CUTE SMILE?! 

Jason and I have been doing a fast with our church called the Daniel Fast. It's, basically, no meat, no bread, no sugar, nothing processed...Just fruits, veggies, whole grains, and water! 
Last year at this time we were in the middle of our fast when Jace was diagnosed. I, firmly, believe that our time of fasting and prayer were instrumental in our ability to be so focused on our faith and the firm foundation to get us through those first few months of leukemia. As hard as it is for me to give up chicken, we always  always  reap the rewards from not giving into our need for instant gratification. 

Since we CAN have popcorn and we eat a LOT of popcorn anyway, I decided we needed to invest in a little popcorn popper. So for about $25 we now enjoy GIANT bowls of popcorn at least twice a day. :) Jace loves watching it shoot into the bowl. I bought this one.













We've also been watching a lot of movies. The crazy weather makes us all just want to curl up on the couch with a warm blanket and a good movie. One movie I've seen lately and LOVE is August: Osage County. So, this family is dsyFUNctional, for sure. And many of the scenes hit me to my core because it's like watching my own life on the big screen. I love how this movie captures the real-ness and messiness of life. Meryl Streep and Julia Roberts are my top pics for an Oscar. Not everyone will love this movie, but I so identify with it and just think the acting is incredible. Note: I do not say that often. :)  

On the side, Jason and I sell a couple of great products. What you should know is that I DO NOT like product pushing at all. If I believe in a product, I will definitely tell someone about it. :) 

Since the beginning of time I've been obsessed with mascara and long lashes. I think as I get older my lashes are set on getting shorter. I found this great product called Younique 3D Fiber Lashes.  It's about $32 and typically lasts 3 months. It WORKS! :) 

Jason is part of a new company called ID Life. They have a line of products for energy, sleep, weight loss, and individualized nutrition. They just launched this week and we were able to go to the launch meeting with many of the founding members. We are both super excited to try the products and tell you how they are helping us. We are ALWAYS in need of energy, sleep products and we also drink a lot of protein shakes, especially when we fast. You can click the link above and take a FREE assessment. The assessment gives you results on which vitamins you need to take when and WHY. (aren't we also like 3 year olds? We always want to know the WHY!)  Then, they package your vitamins accordingly and ship with YOUR name on them! :) We should have products for sampling soon! 

Lastly, in our "free time" you know we are working on our #OPERATIONLOVE project. The past 2 weeks CMS has been collecting donations for us. We will meet with a group this weekend to put the bags together for our next drop off on January 30! We are so excited at how this service project has taken off! We hope to keep the momentum going throughout the year. If you want to donate items, you can always check out our OPERATION LOVE PAGE for details on how YOU can help! 

Remember, the smallest acts make the BIGGEST impact! :) 

So, that's about it! School, work, work, work we love, more work we love, and slowly finding the new normal for our family! :) 

I've always been a fan of normal, but now I DEFINITELY savor the normal (that includes all the MESSY parts of family life, too!) 

xoxo

The Aftermath

While we are quickly approaching Jace's leukemia diagnosis anniversary, we have began to describe this phase of our life and his treatment as "The Aftermath." 

Last January, it was like a bomb went off in our lives jolting us to hang on to the foundation beneath us and to hold on to those around us. Things didn't really seem to "settle" until the fall. That was a LONG time to hold on and ride. 

Now, we feel like we've found a little more of our footing and are beginning to stand tall and look around. Things are definitely not what they were before. 

They don't look the same because our eyes see differently.
They don't feel the same because our hearts have expanded. 

This new year is like we are waking up to a completely different world. We think differently, we speak differently, we love differently, we see time differently, we see people differently and while this is our journey we also recognize that not everyone will get it. 

They won't get why we keep saying to be grateful anyway. They won't get why we brush off the trivial things of life. They won't get why we apologize more and forgive more abundantly. They won't understand why we now are more relational  instead of  transactional when interacting with others. They won't understand why our focus and passion has changed. They won't, but many of you will. 

Since I was 11, I've loved the church hymn Blessed Assurance . . .

This is my story, this is my song...
Praising my savior all the day long...

I sang it with pride and a deep understanding that God had me where he wanted me because my story really is HIS story. 

We all have a story to tell. We all have overcome. We all have struggled. We all  have felt alone. We all have told ourselves that we are alone. We all have something in our past that we've wrestled with and replayed in our minds over and over. 

Some of us push our story way down deep. Some of us never speak our story, Some of us blame our story for our present life. 

Our story can help someone else if we let it, but we have to tell it. 
Because if we tell it, we realize that many others have felt the exact way we do. 

Let's be honest. It's not always pretty. It's not always easy. And to be honest, ya'll, these past few weeks have been difficult particularly for me. I feel God stirring the depths of my soul. 

Now I'm here, sharing with you the biggest story my life has yet to tell. 

While I stand in the ashes trying to make out the future, I also stand in faith and knowledge that I will rise anyway. I already know that a "song can rise from the ashes of a broken life. (tenth avenue north)"

I know from my experience that God's plan for me is bigger than ANYTHING I ever could have dreamed while standing in the aisle of the small church singing my little eleven year old lungs out ( off tune, I might add). 

I know that seasons come and go. Some are long, some are short. It will be over when it has fulfilled it's purpose. 

 He has faithfully shown me that time and time and time again. 

So, I'll faithfully trust that this next season will be greater than anything I've even known. 

:) 

Silencing Social Media

Earlier this month, one of my friends posted on all social media sites that she was taking the 30 Day Challenge from social media. In my mind, I applauded her! 

I've taken "social media breaks" pretty often since the MySpace days. Then, as more and more sites became popular and I tried to stay on the edge of all the new trends for my job, I realized how consumed we all are with tweeting that and instagramming that. 

It wasn't until January of this year, that I realized why that practice was so important and I was so glad I had done it. 

1. Time Waster: Once we became consumed with caring for Jace full-time and focusing on his treatment, our jobs and our girls, we didn't have any extra time to waste. Sure it was good to read through our timeline and "escape" our reality, but we soon learned reading about everyone else's "perfect" days was exhausting. 

2. Unnecessary Annoyances: It is fascinating to me that we all love being on social media and yet at the same time we can be so annoyed with the things we read on there. There's only so many times you can see photos of babies doing the same thing, read about the number of times someone works out, or covet someone else's dinner. For me, particularly, it's very difficult to read people complain about such trivial and small things of daily life, especially this year. I'm sure people are just as annoyed with me about all of my posts of gratitude. ;) 

3. Harmful to Self Image: Comparison is the biggest thief of our happiness. Social media is such a place that encourages this comparison. As humans, it's DIFFICULT to not compare ourselves anyway: they make more money, they have a nicer car/house, their kids are cuter, they are skinnier, their family photos are better, they got to go on a vacation. And then with the comparison, usually comes criticism. Criticism says way more about you than it ever does about the person you're criticizing.

4.  Neglecting Those in Front of You: While it's good to connect with other people all over the world, and it can create a supportive environment at times,  social media can create an environment where you're also neglecting those loved ones right in front of you. The world today is already really busy and we get caught up in bouncing from activity to activity to activity and then bed and repeat usually 6 days a week. When are we taking time to sit face to face with those we love the most? 

5. Only A Moment in Time: Your social media life probably isn't 100% reflective of your real life. We choose to share only a moment of time or a small window of what the rest of our days entail. What people think they know about me from this blog, my Instagram, Facebook, or Twitter accounts, isn't a complete knowledge of me. Knowing me on social media ISN'T the same thing as knowing me in person. 

Once again, I find myself needing and seeking solitude and silence. 

We need to find God, and he cannot be found in noise and restlessness. ~ Mother Teresa

I've decided to begin my own 30 Day Challenge. I cannot think of a better time than right before, during and after Christmas. Our goal this year has been to simplify. We simplified decor, schedules, gifts, and celebrations. 

So, I took the plunge this week and deleted my Facebook app from my phone. I turned off all notifications on my phone and won't be scrolling through any feeds. I'll only be updating, periodically, on Jace's progress on his websites (found above) and you may catch a Christmas photo on Instagram or  maybe a random blog here. You can also email, text, or call if it's urgent! :) 

This time with my family is precious and as the anniversary of Jace's diagnosis peeks closer, I know that the less noise in my head, the better. The more silence and solitude I find, the more I grow and learn. 

I challenge YOU to take time away if only for a day or a week and see how much clearer your mind feels! 

Love and Gratitude, 

...A child will lead

We talk a lot in our family about being a leader and how important leadership is in life. 

We never expected our 3 year old to be the one leading US during the most difficult time of his life. 

On a rare occasion I was able to capture this moment. He often gathers us up for prayers, in addition to our morning affirmation and nighttime prayers. He speaks very quietly and clasps his hands together like this. 

It IS the most amazing thing to watch. His faith and his heart for The Lord is such an inspiring thing to witness. 

I am humbly honored to be his mom! 

Xoxox

Tisha