Showing posts with label cancer. Show all posts
Showing posts with label cancer. Show all posts

Thursday, January 21, 2016

Being Vulnerable

There's no bigger test to your vulnerability than cancer. 

I recently read this great article my friend, Kate Crawford, posted on Facebook the other day. 
Kate and the article come from the perspective of breast cancer, but, man, was it spot on for me, too. {Kate and her story are worth checking out here and you can find the article I read here

Years and years ago, I made the observation that many people who had lived through tragic circumstances sort of "pull away" from all things: social media, attention, social gatherings, being outgoing with new people, etc. 

Back then I curiously wondered why. 

Now, I am that person and completely get it. 

The article talks about "fighting hard" and all the ribbons and races and bravery. It talks about how those who are seemingly healthy and "look good" doesn't mean they aren't still dealing with the mental, physical, and emotional aspects of the disease. 

That article spoke to me like nothing else lately. 

This journey IS isolating. We are very, very, very careful who we trust with our true feelings about all of this. Sure enough as soon as we let someone 'in' they just as quickly cannot actually deal with it and pull away first. 

OR

I find that the normal chatter between friends about normal daily worries and such just don't apply to me at all. I don't feel like I can add much to the typical mom complaints because, well, I can't.

Last week, we were almost late to school because Jace was sobbing and sobbing. He finally told me what was wrong. He was afraid of dying. He was worried that Jason and I would die. He was worried about his teacher. He kept asking questions and for the first time I was speechless. How do you talk to your 5 year old about his fear of death? 

Yep. This is a topic we've had to tackle several times over the last few months. 

And then today when he woke slower than usual and was walking slower than usual, I had to remind myself that the big chemo dose he took last night SO affects him, his bones, his energy and his daily activity. He ALWAYS looks like he is doing great because he is #superjace has a great attitude, but he's still being treated for leukemia. He's still taking chemo. It's still VERY up front in our face even if it's not for the rest of the world. 

At the end of last year, after his two long stays at the hospital and the IV at home for a week, I entered what I would call my "angry phase." If you talked to me at all, I was pretty up front about it. The Tisha that you got was much different than the normal one. 

Our doctor is amazing (and so are our nurses) and she wasn't surprised at all that the anger hit. She also prepared us for being angry again because just as soon as Jace takes his last chemo infusion and then gets his port removed, "EVERYONE will think it's all over and it's NOT." (her words)

Many times people just don't ask. That's a whole different emotion that I  won't go into this time. 

Other times when asked how things are going you'll hear us say "We are good" not because we are necessarily good, but because it's just easier than explaining all that's actually happening. 

Currently, Jace is sleeping on the couch while his sister cries because he doesn't feel good enough to play with her. Today, she told me that a friend asked her if she had a brother that had cancer. She said it made her feel sad but also happy that someone at school cared enough to ask. It's kind of like that for all of us. 

Why do people pull away after a tragedy or long term illness? 

For us, it's a safer place. We can be vulnerable with each other free of judgement. 

Staying off of social media prevents us from comparing our lives to others. 

Avoiding large social settings prevents the large amounts of anxiety that any of us have at any given time. 

We've become very guarded because we are all still working it out as we go. 

Meeting new people is difficult because you simply just don't want to share everything to people who haven't earned the right to be in "the circle." 

....And this is where we are right now...still working on embracing our vulnerability. 

Friday, May 30, 2014

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. :) 

Tuesday, May 27, 2014

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. 


Monday, March 31, 2014

No Make Up Selfie Misses the Mark


Disclaimer: This is my opinion and only that. I've always, always, always been of the thought to DO something (I'm a do-er) in order to help. 

The No-Makeup Selfies for Cancer Awareness on social media: 

WHO is it HELPING? 

You know I'm about awareness, but with the follow up that TOGETHER we will DO SOMETHING. 

I read this article today and thought it was pretty eye opening. 

And here's one from TIME that you should read to see how it all got started. 

I really didn't think much of it until they started appearing more often. 

I think many times we miss the mark when it comes to awareness. Unfortunately, social media oftentimes HELPS us miss the mark, don't you think?




Based on several of my talks with audiences of all ages, pretty much every single person has been affected by cancer and is aware of its devastation already. Many of us who are living in the awareness everyday are also trying to do something to help those just like us. 

If you aren't sure WHAT to do, ASK us. There are a lot of ways to help create a wave of awareness. If you're not sure if your money or donations are actually HELPING cancer patients, ASK. Most of us are in the know of the BEST ways to help and which organizations are going to truly to use the money/donations for those affected. 

In 26 days, we will walk/run with Super Jace and try to raise money to give back to the Center for Cancer and Blood Disorders, our home away from home aka "the clinic." Our goal was $2,000. We have $50. We are attending the event whole-heartedly no matter how much we raise because when given the opportunity we will ALWAYS be all in to help the cancer community. 

Is this about money? No. Is this about awareness? Yes. Is this about actually helping REAL people in a REAL struggle? Yes. Do I know that even your $1 donation will go DIRECTLY to the place that has helped us for the last 15 months? Yes. Should you pick and choose the right way to help that works for you? Yes. 

Do I think posting selfies is the same level of brave as those I know who have fought? 
Not. At. All. 

#wedontfightalone


Team Super Jace - Red Balloon Run & Ride, April 26, 2014

always in love and gratitude,

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. 


Wednesday, February 12, 2014

Unapologetic

I. Am. Angry. 


There. 


I said it. 

Earlier this week, I wrote this update on SuperJace called "Reality": 

That blog spawned a lot of feedback. Some positive. Some negative. Some silence.

It started a conversation at my dinner table with my family about how insensitive and all-about-me people can be. 

Before last year, I knew people could be this way, but it wasn't until this year (2014) that I've really seen how people can disappoint. I always, always, always want to see the good in everyone. Sometimes that is my weakness.

Here's a list of things that our family has heard, personally. It hasn't been until now that we've really exchanged our experiences with each other: 

"Stop dwelling on it." 
"Move on." 
"I really don't want to hear about it anymore." 
"What's the big deal? He's in remission." 
"Your perspective can be a little jaded." 

In this whole cancer journey, I've never felt anger. 

Until now. 

I'm angry because it, literally, breaks my heart that some people really cannot see past themselves. 

They are so wrapped up in their stuff that they don't see the need right beside them.  

Dear ALL-ABOUT-ME People, 

I will NOT apologize because the things we're going through make YOU uncomfortable. 
I will NOT stop writing about the journey we still live and giving you the real, raw details. 
I will NOT stop talking about what we go through even when the words aren't pretty enough for you. 
I will NOT always give you the neatly packaged story you think you need. 
I will NOT stop discussing CHILDHOOD CANCER AWARENESS because multiple times a day a family is changed forever. 

I WILL keep telling the story. 
I WILL still come from a place of love. 
I WILL not let your negative words to me, my husband, or my children overpower the love we will continue to send out. 
I WILL keep serving, supporting and helping those in need even while in the middle of my own journey.

My anger will only last a second because it will then fuel me to DO something outside of myself and then will turn into love for others who need it. 

When you see me, I hope, instead of looking down or away in pity, you will raise your eyes in gratitude and love and pass it on to someone else. 

"'You shall love your neighbor as yourself.' There is no other commandment greater than these." 

Love More. 
xoxo

Sunday, January 26, 2014

Knowing

I knew. 

There may be some reading this with doubts, but I knew Jace had #leukemia before the doctors and the blood test confirmed it. The weeks and months leading up to January 26, 2013 were a time for God to prepare my heart, mind, and faith. I had A LOT of "talks" with God and somehow I just knew cancer would change our lives. I did the bargain prayer. I did the questioning: We've been through this, and this, and this, but do we really have to do this now, too?

My conversations with God would read something like a Francine River's novel. 

I knew something in our lives would change. I just didn't know exactly what. 

10:20 pm the night of Jan 26th: I knew we had to get him to the dr immediately. I knew I would have to wake him from his sound sleep. In my core, I knew we didn't have a lot of time. As we drove the tollway to Children's Hospital in Plano, I reviewed the last few hours. 

"Jason, I know you will think I'm crazy, but I'm certain Jace has leukemia." 

"Take him to Children's immediately. Do not wait." Every medically qualified person we talked to or texted from 8 pm - 10 pm told us this after we explained his symptoms. 

As I texted 5 people, praying someone was awake to come stay with our girls (Thank you, Shelsea), I was also packing and instructing Jason to pack for all of us for at least a week. 

I wish now I'd been more sympathetic to his confused look when I told him that. There wasn't time, though, and even my head was spinning out of control at what our life would look like now. 

"He has these bruises here and the spots on his face and in his mouth that have worsened since we left our house."

It took about 1 second for us to get ushered back for the nurse to weigh Jace and check his temperature and than only about 1 more second to get us to a room and then maybe 2 seconds for the ER doctor to come. 

If you've ever visited the emergency room, you know that's not how things usually roll. 

As the doctor checked him and we held him down screaming and crying to take his blood, I knew. 

When the doctor came back in and said.......

Well,  you know what he said. Even the nurse was crying FOR us through her apology. I felt so bad for her. 

Jason dropped to his knees. 

[from Jason: "It was the scariest moment of my life. Through everything I've experienced nothing has even come close to what I felt that night. Your whole world comes crashing down. Everything you prayed for, you realize it could be taken away in an instant. Fear set in, but faith overcame. I'm so thankful for everyone who was there for us in the instant our lives changed."]

Through my tears, I nodded my head and said, "Now what?" 

The wee hours of the morning after that are not a blur. I can tell you pretty much every detail. 

I remember Jace crying as they strapped him down again, this time to the bed in order to be transported by the ambulance to Dallas Children's. 

I remember the faces of the ambulance drivers. I remember just as we loaded up, the oncology doctor ran to me and with tears and smiles said, "I'm 99% sure it's A.L.L."

Jason needed gas in the car, yet also needed desperately to follow the ambulance. I hated that we were all separated from each other. The first of many, many times. 

In the ambulance ride, from my phone I worked ravenously to set up his Caring Bridge. I knew when the sun came up, we would be overwhelmed with love, prayers and messages. 

I remember every person who dropped their Sunday plans to be by our side. I remember having to sit with the girls and tell them "Jace has leukemia." I remember planning every detail of that moment for them so they knew they were supported and loved and would be taken care of no matter what our days brought. 

In the ICU room we were assigned, we were overwhelmed by a zillion doctors asking us to repeat how we got there. 

It was also in that room after a group of men came early that morning that I saw with my own eyes the power of prayer. Hours after their visit, Jace's counts started leveling off so that he was able to leave the ICU AND the Dallas hospital and have his port surgery and treatment in Plano. This was the first of MANY answered prayers. 

We were in Dallas only 7 hours. They expected him to be there much longer. 

God is good. Every time in my life that felt like He wasn't, He proved to me that if I only trust in Him, all will be ok. ALL of that stuff I'd experienced before was only proof of why I should trust Him in all things. He never failed me, never left me. 

I knew this was no different. I knew that Jace was just as precious to Him as he was to me. 

The only control we have over anything in this life is over our attitude, our faith, and our love. 

Many days and many nights our only survival was our faith. 

Today, we know we will never be as we were before January 2013. We won't respond to people or situations the way we did before. We won't waste time worrying or fretting over what could happen. We won't take any day for granted. 

We will love abundantly. 
We are thankful in all things. 
We are thankful for 2013 and all it brought into our lives: good and bad. 
We will savor these precious moments in time with our family. 
We choose to focus on helping others who are where we've been.
We choose faith over fear. 

We know that is the only way to live. 

xoxo


Tuesday, September 17, 2013

Faces of #ChildhoodCancer

We promised to show you some amazing kids and if you've been following Grace for Jace, you've been seeing our kid spotlights every few days! 

As you know, life is super busy and to blog in two different places is truly a miracle. :P

We decided to post our kid spotlights along with their blurb and the place you can learn more about their story! 



This Ashley and Austin. They are both #heroes in our eyes and are symbols of #HOPE to us each day.
Ashley was diagnosed with (ALL) #Leukemia in Sept 2007 when she was 3 years old and completed treatment during kindergarten (2009.) 

Austin was diagnosed with (ALL) #Leukemia in July 2010 and finished treatment this month! 
This is Karly! She holds a special place in our hearts as we were there in the days cancer changed her family. At 14, she was diagnosed with Ewing Sarcoma. She's had two reoccurrences since her first treatment and endured several surgeries. Today, she is 19 and stable with 2 spots on her lungs that are not growing. Her phrase is "Keep Calm and Carry On" and that's exactly what she is doing!  www.caringbridge.org/visit/karly

Jace and Kieran have become "super" friends during their time at the clinic. Kieran is 2 and just one week ahead in the same treatment as Jace. He's one of the sweetest boys we've met and ALWAYS brightens our days. Here's Kieran's story!








Our family met Trent at Dallas Children's in June riding the halls just as you see here! 

Trenton was diagnosed on January 2, 2013 with Stage IV, high risk Neuroblastoma (n-mync amp) two weeks before his 1st birthday. Trenton had tumors in his adrenal gland, lymph nodes, bone marrow, and bones.

Trenton is now 20 months old and is NED (no evidence of disease). He's undergone 8 rounds of chemotherapy, 4 surgeries, bone marrow transplant, numerous hospital stays and 12 rounds of radiation.

He has scans the week of September 23rd. Trenton will begin antibody therapy/immunotherapy during October which will last for 6 months.





Phoebe 
There's not enough days/weeks in September to spotlight all that are affected by childhood cancer.

Today, we ask for you to pray for a very special family with a very special girl. Phoebe's dad went to HS with Jason. 

You'll want to catch up on Phoebe's story here:
https://www.facebook.com/PrayForPhoebe




We ask that you "adopt" a family and a child every September and that you follow their story, get to know their family and continue to lift them up with love and prayer! 

As always.....

In gratitude,
Tisha

Sunday, July 14, 2013

Isolation


**as posted on www.caringbridge.org/visit/jaceponcio/journal**

We never thought we'd know so many versions of this word. 


Initially, we think of Jace being on isolation because his ANC is so low. But after 7 months of the day-in-day-out, I can tell you there's a lot more to the word.

I searched and searched this week for articles and blogs on the emotional affects of families affected by cancer. Nothing.

Well, there IS stuff, but not the stuff I was particularly looking for and nothing genuinely written. It was a lot of medical research done on families who had a family member with cancer or taking chemo.

Meh.

Not a coincidence that on Friday, Jason ran into some other families who were staying in the stem cell portion of the hospital that we were. (No, Jace doesn't need a stem cell transplant, he just gets the first room available)

Their conversations to him went something like this:

"We've been going through this for 2 1/2 years. It does feel like isolation. People don't know what you're going through. Even if they think they know, they really don't unless they are in the middle of it all with you." 

"People do help with meals and gift cards and/or cleaning our house and it DOES help, but we never feel like anyone truly understands." 

"I'm a grandma and the only one who is really taking care of [him.] I don't have a car and taking care of everything is hard."

This is one of the most isolating experiences ever. The emotional toll that it all takes on us is something that can barely be put into words. It's like the 5 of us have gone to war together and really no one else can come close to knowing all of the feelings involved. We've got a bond together that no one can touch and it's definitely brought us all a lot closer together.

As I continued to think on the topic of "isolation," I began thinking of it in a deeper sense. (I know you're not surprised.)

Isolating experiences are necessary for God to mold you and make you. I think back to Esther, Daniel, Job, Noah, Mary and Joseph from the Bible. Each one of them had some sort of isolating experience(s) and many times those were the times they were touched by God for something great.

Today, during a run, I did my own little Bible study on isolation. At first it seems to be seen as negative thing to shut yourself off from the world:

"A man, having separated himself, seeks his own desire, and rages against all sound wisdom." ~Proverbs 18:1
Then, as I dug deeper I found more of what I was feeling:

"Don’t love the world’s ways. Don’t love the world’s goods. Love of the world isolates out love for the Father. ~1 John 2:15  Msg
"Before daybreak the next morning, Jesus got up and went out to an isolated place to pray". ~Mark 1:35 NLT

"He said to them, “Come with me privately to an isolated place and rest a while” (for many were coming and going, and there was no time to eat)." ~Mark 6:31 NET

Since Thursday, we've taken a step back from social media, texting, etc. If you have heard from us less, this is why. We've needed to take a spiritual and emotional deep breath. No noise, no world, just us and God. We need time to recharge, to gain strength, to have clarity and just be.

Jason and I have had this conversation a lot in the last 6 months.
We often feel out of the loop and as if we do not fit in anywhere. This isn't necessarily a bad thing, it's just something we haven't felt. It's not a secret. We don't fit in. We are different. Life has changed.

People tend to think, 'Well, Jace is doing chemo and once it's over, everything will go back to how it was before. They'll be back to who they were.'

Nope. Not even close. We will all never, ever be the way were were before. We will not respond as before, we will not live as before, we will not love as before, we will not go back to the before.  Right now it's hard for people to understand that we cannot be as available as we were before: emotionally & physically.

Typically, we believe to give 110% to everything we do, but now, we can't step up and go above and beyond at work, at church, with friends, with family. It takes some getting use to and people close to us have chosen to not be a part of our lives anymore because of the great change. We aren't angry by this, we just know that as others' seasons change from winter/spring to summer/fall, our season is leukemia, chemo, healing, and maintenance.

It's hard for others to understand how deep we've been touched by this experience. Work seems trivial, we aren't as OCD about laundry, dishes, scheduling, and on another level our passions have changed completely. We want to speak out for those who've come before us on this journey. We want to raise awareness for childhood cancer and, more importantly, we want to support the FAMILIES affected on an emotional level.

We don't know what our future holds, but we hold strong to the knowledge that God is for us and wants to prosper us and give hope.

For now, we leave you with this reading from Jesus Calling. 
July 14: Keep Walking

Keep walking with Me along the path I have chosen for you. Your desire to live closer to Me is a delight to my heart. I could instantly grant you the spiritual riches you desire, but that is not My way for you. Together we will forge a pathway up the hight mountain. The journey arduous at times and you are weak. Someday you will dance light-footed on the high peaks, but for now your walk is often plodding and heavy. All I require of you is to take the next step, clinging My hand for strength and direction. Though the path is difficult and the scenery dull at the moment, there are sparkling surprises just around the bend. Stay on the path I have selected for you. It is truly the path of Life. 

Love and gratitude,
Tisha & Jason

Monday, January 28, 2013

For His Glory

You never expect to hear words that will forever change your life, but we all have them said to us at different times and for different reasons. 

In the wee hours Sunday morning, we learned that our sweet almost 3 year old has leukemia. 

If you know me, or this blog, you know I believe in gratitude and just as much I believe in prayer and in God's healing power. 

Many times we do not understand the "why," but even in hindsight of my own life, I know that He works ALL situations for GOOD. He can take ANY SITUATION around and turn it into an amazing thing. 

I praise him always and in ALL WAYS. Even now when I find myself in an unknown place. 
I know I'm not alone. I know that God will use this situation, as well, to show HIS GLORY and HIS MIRACLES. 

Our job is always to BELIEVE, so that's what I'm doing. Always. 

Jace's Facebook page: Grace for Jace: www.facebook.com/graceforJace

Jace's favorite song and our new theme song: 
http://www.youtube.com/watch?v=fpPZn7sjBfw

#SUPERJACE #NOTHINGISIMPOSSIBLE