Showing posts with label Jace. Show all posts
Showing posts with label Jace. 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. 

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