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