"Keep pretending everything is fine. Keep doing the thing that only benefits you. One day you'll see you're not in control. One day you'll see how you could've been loved." God uses storms to cleanse us. Sometimes He has to fiercely work on people to bring them closer to Him. I know storm after storm is meant to cleanse me. Some storms are about me and some aren't. But there are days when I often ask "WHY?" and cry out "I'm drowning!" Then, I go back and forth with myself and my circumstances (some public, some not). "WHY NOT ME?" This one phrase humbles me to my knees every single time. One day you'll read how He redeemed me, protected me, saved me, and loved me because even after all of the uphill climbs and the many miles, every single time I look back all I see is His complete and authentic love. Today, as I was just about to lose sight of trusting and having faith in the unseen, I glanced over at a shirt that was sent to my by Vanessa, owner and creator of RUFFLES WITH LOVE. She's started a new line for indestructible women and is using her website to tell their stories and inspire women like them. I was so honored to be able to wear one of her new shirts. So after a long day at work, I pulled myself off of the couch and slipped it over my head.
There was something empowering about wearing it. It reminded me how strong I am, how strong I've been, how even on the days I think I'm the weakest, He still guides me and keeps His armor around me no matter what chaos, selfishness, drama, negativity, or criticism is swirling around me. Circumstances still haven't destroyed me. And they won't.
September is Childhood Cancer AwarenessAction Month!
Most of you are aware now how often children are diagnosed and thrown into this community without warning. If you've been reading this blog or this caring bridge for any amount of time, especially at the beginning of our journey, then you know we've been very candid about our struggles and our victories with Jace and leukemia. I think I'm speaking for most of the families I know affected by childhood cancer when I say we celebrate when anyone wears a Super Jace T-shirt, remembers yellow Wednesdays or donates to our new passion Operation Love in hopes of making it a non-profit for families of childhood cancer (We always need donations!). We are thrilled because doing these things means YOU are being AWARE and thinking outside of what's going on in your own life. Now we are being candid about taking action. The only way that we will make a difference is if we band together and DONATE to places that are making a difference in research and in lives. Fellow cancer mom, Candi (www.caringbridge.org/visit/karly) and I put together a list of specific places that we know, firsthand, are focusing, specifically, on childhood cancer. You may see some of your favorite charities not listed. We wanted to give you a list of organizations that we as cancer parents trust and know are giving most of their donations to childhood cancer research. (more info http://www.stbaldricks.org/filling-the-funding-gap/)
Some of the links below are organizations that either help families financially or help give the kids and the families some great memories during treatment that we've worked with, personally.
The following list should be helpful to you as you make your choice for donations this month.
Childhood Cancer Donation List
**direct money only to childhood cancer related causes, primarily research
If you'd like to, specifically, help a family whose child is currently undergoing treatment, please email us for more information. onthewingsofgratitude@gmail.com
Visit Charity Navigator to view efficiencies & financial information for many major charities:
I'm so thankful for YOU today. You will probably spend more time with them than we will this year. You'll teach them, love them, direct them and protect them. You'll watch them grow, see them run and play, cheer when they master a concept, and probably see them shed a tear or two. We hope you experience authentic joy while you spend time getting to know each of them and see what we see in them that is so precious. We pray for you daily because raising kids takes a village and now you are part of our family...our village.
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.
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