I will always wonder who you would have been. What would you look like now? What would your favorite food be? What kind of music would you listen to? Would you be married? With kids? Would our family be closer because you stayed? Grief is a rollercoaster ride that you cannot get off. Sometimes it slams into you without any warning. Other times the ride is slow enough that you can slightly open your eyes and look around. My soul weeps because of grief. Strengthen me according to Your word. ~Psalm 119:28 Some years go by and I am able to make it through the anniversary week with only love and lots of comfort. Other years go by and that week is full of nightmares, flashbacks, and unanswered questions. This year I was not prepared for the grief that surrounded my heart. All I wanted to do was jump in the car and drive back to the last place I saw you. July 26, a day etched in my memory forever. My memory plays the same scenes over and over and I do my best to overcome them. Watching you walk out the door, Knowing you wouldn't be back. Feeling paralyzed and scared, yet knowing without a doubt that God was there in that moment with all of us. Seeing the cyclist riding by our house and realizing that his life was normal, but my life had just changed forever. My grief is not just for a brother I lost, but for a family, for a future that we didn't have, for parents who lost a son, for the realization that my innocent thoughts about life were taken way too soon. Maybe it's because I now realize that I could've lost my own son, too, just last year on January 26 (I'm not a fan of the #26). The thing about death and grief is that even after almost 30 years, I'm still consumed by grief some days. It's not as it was in the beginning. The pain has dulled over the years, but it's still present and hits me out of the blue. As this week went by and my subconscious knew what week it was, I decided to not be consumed by it. I gave myself a day. Then, I picked myself up and started making plans. I got my hair professionally colored for the first time. I made 2 dinner dates with friends. I spent more time laughing. I wrote down all of the good from the week. I surrounded myself with those who love me. I started some new projects. I reminded myself - I AM STRONG.
Because even though this week (read brief story here) marked how long I've lived without you, I know that you would want me to LIVE LOUD and keep going.
1. People are genuinely good and want to help. Let them.
This was the biggest lesson I've come away with and it's been the most difficult one so far. It's HARD to let go and admit that you cannot do something alone. It's not easy to ask for and receive help or believe that people just want to help without anything in return. The world programs us to believe that we must do all things ALONE and be adults and take on all responsibility onto our own shoulders. It's a lie. We need to band together and help each other do life. We need to be able to give whatever we can to a need in someone's life. Sometimes that means donating money or making a meal or just being a friend.
2. Like all traumatic events, this revealed everyone's true character, including mine.
All abrupt events, typically, will reveal your true character. I've watched this happen before, but was not prepared for the extent of the reveal this time. When your world is shaken you are either standing on a firm foundation or you are not. You cannot fake that. I watched as not only my son was getting treated for a life-threatening illness, but as close relationships were being tested because cancer was now a factor. I was not prepared for the actions and words of others nor was I prepared to know how to handle those situations. Now, I'm stronger in my boundaries and more confident in how to deal with those obstacles. I'm also learning more about who I am and how strong I really am.
3. Re-examining your life and priorities cannot be avoided.
Better to do it now than to wait for that life changing event. If you're putting anything before your relationships, your health, or your well-being, don't. All it takes is a few words to jolt you into realizing what's really important. That work deadline/meeting is meaningless. Eating junk to cover up emotional struggle doesn't make the struggle disappear and means you're giving up your health too soon. Are you telling your kids "not now" and "maybe later?" Are you not taking in the gratitude of the simple moments of a snuggle, a lazy, boring day, or your healthy child? No worries. Something will jolt you into realizing what's REAL and what's not.
4. Life Goes On.
I know this lesson way too well. On the one hand we love that life goes on. It means that the struggle won't last and "this too shall pass." But on the other hand, it means that life does go on and sometimes, when you're in a grieving state or life has stopped for you, it feels like everyone is moving on and leaving you to sit in that pain. Bottom line: that feeling sucks. But it's also a motivating factor that your life will see better days. Maybe not the exact days you had planned, but you're still living and breathing and so living is your purpose! We still have a lot of days (about 500) left on this leukemia journey and we still have some struggles to overcome, but we've seen worse days. And that's the key. We've all had worse days but they always pass. Always.
5. Negativity will always try to win.
You ARE stronger. You ARE. Ok, so that is a little self-talk that I've been working on myself. Voices from the past will always try to tell you that you're not good enough, you're not worthy, or you deserve whatever uphill struggle you're walking. What's key here is to surround yourself with people who will LIFT you up and remind you of all the things you believe and believe in: hope, love, healing, rest, miracles....When you find people to be your circle of trust you are entrusting them to do all of these things and continue to be on call for you whenever you need them. See #1. We aren't meant to do life alone, but we aren't meant to do life with all the negative people, either. :)
6. You are more than your role.
"Super Jace's Mom!" I get that a lot. I'm ok with it. I'm proud of it even. I'm so lucky to get to be his mom. But I'm still more than just that and as the months have gone by it's been easy to feel that most everyone just cares about him and what he's doing or how his treatment is going. Some days I feel like yelling, "I'm HERE TOO!" This is something I have had to work hard at overcoming. I am a caregiver and I'll be the first to tell you that his treatment and progress is top of my priority list, but I do other things, too, and enjoy being other things.
7. Re-defining yourself is ok.
I'm now in the stages of finding the new Tisha. The Tisha who has walked through this cancer storm and is coming out on the other side. I'm not the same. I don't do family, friendships, work, love, or passion the same way that I did before. I don't like all the same things I did before and am finding joy in new things that give me peace. Instead of trying to be everywhere and share everything, I'm picking the things I enjoy the most and only sharing what I feel in the moment with no obligation. Being the old Tisha in a new season just won't work.
8. There will always be another "Goliath."
Pray for strength and wisdom. Don't pray for an easy life. Strength and wisdom will come because you're open to it in expectation. An easy life doesn't exist. I refer to life's struggles as Goliaths. They all seem giant when we are in the midst of them, but as long as we are faithful we already know how they end! Each struggle is only there to teach you something and prepare you for the next. There are always valleys and mountains! I'm so thankful I'm just not continuously walking around in the desert!
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.
**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)
Beaware 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.
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.
I'm not enough. I'm not worthy. I'm not pretty enough. I'm not skinny enough. I'm not rich enough. I'm not valuable. I'm not significant. I'm not good enough. I'm not polished enough. Last week, I had to do something that re-opened a wound that I still have difficulty letting go of after many, many, many years. This wound has a way of taking me to the root of all of my pain and rehashing it all out over and over. By the time the week was over, I was unsure of everything I knew. Because Sunday started my week off in pain, I had difficulty just getting through the week. Getting up and getting motivated was hard. Wednesday was especially hard. This leukemia journey with Jace is long. There's not much else to say. To everyone he looks great. He has his hair back and runs with boundless energy. This IS a victory. As we drove home Sunday afternoon, we listened to a sermon that spoke directly to me. Everyone knows the story of David and Goliath. Everyone knows it ends in Victory. But not everyone knows about "the grind" behind the story. David is hands-down my favorite character in the Bible. He wasn't perfect, but he was raw, honest, deep and faithful. I love his acute awareness for God and his need for God in his life.
Monday, I started the week feeling tired of the grind and ready to just give up. The week didn't get easier, but by Thursday my sweet husband had paid for me to go to our church's women's conference. I, truthfully, had to force myself to go. I was not in the mood for much of anything, but I sat as a woman talked to me about patience as God places us in an environment to receive what God will give us. Patience. OK, God. I'm listening. The next night I sat as a women repeated me to me all of the things I had been telling myself. All of the first things you read when you first opened this entry. She immediately pointed us to Galatians 6:3. Boom. In your face, Tisha. "If anyone thinks they are something when they are not, they deceive themselves." For weeks, I've been discouraged and tired of sharing my/our story. I'm out of words. I don't feel worthy enough to share. I don't feel polished enough to speak to people about it. I'm tired of "being inspiring." I've been on my knees begging for a break from "the grind." And then I heard an angel (who is also named Natalie) speak directly to me: "Share your story. Speak your truth. You were saved to save. You were blessed to bless. You were loved to love. There are people only you can reach." Boom. Again. Ok, God. I'm willing. I will stop deceiving myself. I will look past myself in order to go out in the world and grab what you have for me. I hear You. The grind is tiring. The grind isn't easy. It's always harder when you get deep into the middle of it all. It never looks that hard when you start out and it always looks easier to those watching you. I'm not trying to be inspiring most days. I'm just trying to get up and be sure the kids are taken care of and that we all eat and get enough sleep. My faith is solid, but just because of that doesn't mean I'm signed up for an easy life. Seven days ago I was in a much different place than I am in today. I'm listening. I'm stepping aside to let God in my boat because even if it's sinking, HE is there to carry me above the waves.
I'm leaning into willingness. I'm leaning into prayer. I'm leaning into the word. I'm leaning into gratitude. I'm leaning into forgiveness. I'm leaning into praise. I'm leaning into His grace. I'm leaning into His love. I'm dropping all of the deceiving things I've been telling myself right at the feet of Jesus. He doesn't want me carrying those things around anyway. He didn't create me to be those things. He wants me just as I am. He wants me to embrace me so that I can fly the way He always intended. xoxox
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Find a Yellow shirt to wear for #yellowWednesdays and #childhoodcancerawareness! Help us and join us in bringing as much as awareness for children as #pink for #breastcancerawareness! Be ready to use the hashtags so we can see your photos of YELLOW!
Operation Love has a new drive going! May 5-9 drop off your small items at Celina HS! Many students are helping with this drive so we can take more care bags to caregivers at Children's Hospital and Cook's Children's! For more info visit our page: Operation Love
Jace and Pudge Rodriguez
Jace had a busy day yesterday! He was able to go to the Frisco Roughrider's game and hang out with Pudge Rodriguez! Pudge and the RR were awesome! A big thanks to Sherry Hale for getting us out there and to Pudge, the RR's and Dawn Nuefeld for being amazing during Jace's time as honorary hero for Silver Dollar at the Ranch. The event is May 17th! Please visit their website to purchase tickets and join us for a night of fun and giving!
Jace, Pudge, Rough Riders, Dawn
Jace, Tisha, Dawn
Lastly, Jace is the weekly warrior of FI8HT, an amazing company bringing awareness to those around them! We happened to find Fi8HT on Etsy and ordered Jace a "Little Fighter" shirt. He loved it so much and it reflected how we felt about his journey. Now they are featuring a weekly warrior and that warrior gets to pick a charity of their choice! For every order that comes in this week, $7 will go to our favorite organization, Peach's Neet Feet. Please visit their website and order for those little fighters you know (cancer, autism, diabetes): www.fi8ht.com
Big love and thanks for ALL of your support out there! Together we will find a cure and create awareness so that no one can look away!
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