Showing posts with label superJace. Show all posts
Showing posts with label superJace. Show all posts

Monday, June 22, 2015

Behind the Smiles

Ugh. This week has already been tough. 

If you scan through any of my social media feeds {or the past blog posts here}, you'll most likely find the positives, the smiles, and  the gratitude. You'll also find a dash of authenticity and reality thrown in there, too. Part of what I wanted to do in the very beginning of my journey with Jace was be real. I wanted to be able to give you the day-to-day Tisha - not the one people call heroic, or brave, or an example. I may be all of that, but at the end of the day I'm really just me, daughter of the most high, and thankfully so because I could do it no other way. 

Some weeks are easier than others, but NONE of the weeks are easy. 

As you've probably gathered from the last year, holidays are bittersweet. Mother's Day and Father's Day, in particular. I do a lot of avoiding of social media and and television. There are some spaces that are still healing and as thankful as I am to be a mom to these amazing kids and have an amazing husband who is one of the best dads, we both agree that these days are often still filled with pain and reminders of what we didn't have or have lost. 

I miss my dad. I miss the random and unplanned talks we would have late at night. I miss him teasing me or hugging me. I miss him looking at me and being able to tell me all kinds of memories from my childhood. I miss him talking to me on the phone and remembering what he had for dinner or what he did the day before. Someday I may miss that he even remembers me. 

On the flip side, the day is also painful for my girls who always spend it with their dad. This year their visit was filled with mostly anxiety which made me a lot more anxious about the day. It was a hard day for us all because everything seemed off-balance. 

THEN.....

because chemo is a few days away, Jace has a hard time sleeping. He anticipates the port needle going in and the "sleepy room" (aka spinal) and the pentam booth. Last month was a hard one with him because he was more angry about it all. Every night since has been harder when it's time to take his chemo pills. He doesn't understand why taking them is important, he doesn't understand why he can't eat or drink before or after them. He cries because he asks when he gets his port out and even though we share with him that it will happen, he cries because he just can't fathom that far into the future. 

He's more weepy and clingy to one or all of us. Little things set his emotions into a tailspin and it's exhausting for us all, including him. 

This cycle is the cycle we are on every month. Just when he is feeling a little better, those nasty steroids kick in and make him feel crazy again. 

Which also makes US feel crazy because knowing when it's the steroids and knowing when it's just him being a boy is HARD. 

Behind the smiles you see from us are both, is a strength that only comes from God. Those smiles don't show you how tired we are of this journey and how our emotions are still cRaZy most days because of so much going on {work, work, bills, and "stuff"}. 

Those smiles were tears just a few hours before or later. 



It's summer and I STILL don't feel like I can keep up. That is a feeling I've never had before because I've not had to work as much and it's kind of making me insane. I thrive on prioritizing time alone, time to read, time to breathe, time away but when I don't get it for whatever reason, I'm always thrown off. 

I try to remember that this is a journey, not a destination. But some days behind that smile, I'm still looking for a finish line, a break, a breather. And, honestly, there isn't one. Life goes on. My girls are growing up, my dad is growing old, end of chemo is getting closer, but none of that is an end. 

It's a beginning, a new season, if you will and that's probably why we continue to smile and find the little joys in the hard days. 


"To everything there is a season, and a time to every purpose under the heaven."
{Ecclesiastes 3:1}






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