Update #9: True Grit.

#ItsJoTime

Josephine is doing really well. This week, we finally got back to WaffleHouse (a weekend regular pre-diagnosis), Josephine got a manicure and pedicure for the first time ever (thanks, Grandmom). Josephine played new board games with me and Randall and enjoyed several visits from friends. She met her first goal in physical therapy and is walking much more. We’ve gotten back to panties (from the pull-ups that we had to use in the hospital) and I even saw her have enough strength to pull her panties and shorts up herself this morning. Her wake-ups from anesthesia are getting so much better, and she even told me she “loved” radiation treatment this week. That is probably because we’ve worked at it. We’ve developed a routine, we’ve tried again when things didn’t work out, we made friends with the nurses, care partners, transportation specialists, anesthesiologists, and CRNAs. (We even had a luau with Tresa Sadnick.) We are working it. I wanted to tell you all this: Josephine is a really, really, hard worker. She is fighting. She is trying. And when something doesn’t work out, she tries again. This isn’t magic. She wasn’t born with something special that helps her fight a brain tumor. Yes, she has grit. But that is something we all can work on.

Grit. True grit. I feel like there are only a couple of things getting us (and for this post, I’ll speak for myself), getting me through this. One is grit – perseverance, dedication, grind. Two is faith – belief in the best of people, the understanding that Jo is walking down her road just as she is supposed to. Three is all of you (including my amazing husband and partner in everything, grass-skirt wearing Ryan Wrenn). Just when I think there is a challenge I don’t have the answer to, one of you comes up with a solution (see Update #8 if you don’t remember). Jo has these same things. She is benefiting from all of your support. She is also developing her grit.

I owe much of my grit to my father: Jim Haugner (Jo’s “Papa”, Jim Haug). He taught me a lot, from dividing fractions, to changing a tire, to the order of the planets, to the notes in a major scale. He also taught me three important lessons that were key to developing my (and by translation, Josephine’s) grit. (1) You can ALWAYS paddle faster than the river. (2) Accelerate THROUGH the curve. (3) Use your nervous energy to your advantage.

1. You can ALWAYS paddle faster than the river. Have you ever canoed? Kayaked? Taken a boat over class 3 rapids? Relied on your own strength to push through? Even if you haven’t, you can still get this lesson. The river will always be moving. It won’t stop. Picking up your paddle or dropping it down won’t slow the water. Pulling to the edge and grabbing a low-hanging branch won’t slow the water down either (and is a good way to get a snake in your boat). Trying to turn around? Nope. That water is going to keep moving, whether you’re ready to go over the drop, or turn the corner, or not. Your boat is going to keep moving with the water. Your boat is in the water. You are in the boat. But here’s the deal. If you paddle, you push yourself forward through the water. If you paddle, you can steer. If you paddle, you control your path. If you paddle, you are pushing IN ADDITION to the current. Any paddling puts you ahead of the current you’re already in. So, don’t act scared. Don’t grab a branch or put down your paddle, because the water will keep going. Get your arms up, get your game face on, and paddle through. Then, you’ll be in control of where the boat takes you. Sure, the rapids might be bumpy, but you’ll be the one steering. I take great comfort in knowing I can paddle faster than the river. Doesn’t mean I’m not scared of the rapids. Doesn’t mean I don’t feel adrenaline or trepidation about what’s around the next bend or down the next drop. But I do know that if I keep my game face on, keep my arms up and moving, I can push through. Josephine knows this too. She doesn’t know why she has a brain tumor, but she knows she has to go to treatment, so she does. She doesn’t know what will happen if the tumor grows (she asked me that this week). But she does know that if she stops doing radiation, if she stops doing chemo, if she stops pushing herself in physical and occupational therapy, then she could get sick again. So, she gets her arms up. She pushes through.

2. Accelerate THROUGH the curve. This lesson I learned in a red 1985 Ford F-150 pickup truck. Not unlike lesson #1, a road is like a river. You have a map, a place you know you’re going, but you don’t know every twist and turn. You don’t know exactly how fast to go or how dark it might get. Sometimes, you hit a moment where you lose control. Maybe its a tight curve. Maybe its a black icy patch. The trick here is to keep in control. How do you do that? You set yourself up for success as best you can (break to slow before big curves or icy bridges), but when you’re in it, in that curve, in that icy patch, you dig in. To gain control, you accelerate THROUGH the curve. You’re sliding? You steer INTO the slide. If you lose your head, let go, freak out, hit the breaks, you’re giving up the power you do have. You hit the gas, you bear down, you get more traction, more force supporting you, more control. Your wheels are sliding? Turn into the slide, not away from it. Face it head on, take away its power. Get back the control. Are we in control of this journey? No. We don’t know how tight the curves are, the condition of the roadway. But we do know that when presented with an obstacle, we don’t give up, we don’t let go. We bear down, we steer into it, we accelerate through it. Jo needs radiation? Great. She’s going to be the best damn patient you’ve ever seen. We have issues? We won’t stop or slow down. We’ll change what we need to to support her and we’ll keep pushing. Sure, we’ll set ourselves up for success as best we can for the obstacles we know about, but we won’t let the rest throw us off course.

3. Use your nervous energy to your advantage. You all know about Fight or Flight. Presented with something threatening, you get a big discharge from your sympathetic nervous system, adrenaline and hormones to get you stronger, faster. Now, sometimes when people are scared or nervous, they don’t face the thing. They run away. This, my dad taught me, was a waste of all of that amazing new energy. Backstage at one of my first live performances in front of an audience of hundreds, I told my dad my body felt weird, tingly, buzzing. How amazing to have that extra energy, he gushed. Great! Use it. Sing louder, be bolder, move with more strength. Up against a new or scary thing, you can choose to use your energy to run the other direction, or you can use it to make yourself an even better version of you. You can be stronger. You can be bolder. The new energy isn’t infallible. It’s not a security shield or a protection spell. You have to harness it. But how powerful it is to use it to be better, kinder, more inspiring version of yourself. We have had a lot of scary situations in the past few weeks. I’ve felt that tingly, buzzing feeling a lot. The results of the MRI, watching Jo struggle to breath, watching the heart rate change on the monitor, the oxygen level drop, or watching a nurse struggle to get blood and worry Jo will need to get stuck again. You get a jolt. A shot of adrenaline. You can lash out at the care partners, run away, or you can harness it. Breath deeply. Use the energy to focus, ask questions, be the strength that someone else doesn’t have. This is what we’ve tried to do for Jo, and with Jo, and taught Jo to do for herself. We can’t protect her from all the scary things. She will need to get poked. She will need to get an EKG. She will need to get an x-ray. But we can teach her its ok to be scared. It’s ok for you to be nervous. Use it. Use the energy to be strong. Be bold. Be still and steadfast. Its every Monday morning when we access her port. It’s every time we ask her to do something she’s unsure about in physical therapy. It’s every test, procedure, and unknown result. She is learning what it means to be brave – brave doesn’t mean the absence of fear. It means persevering in the face of it.

So, this is how we’re getting through this. This is how Jo is practicing her grit daily. How I am practicing my grit daily. How we are persevering, trying again, fighting and grinding. We’re having fun, too. We’re putting on lipstick. We’re singing in the car to Billy Joel and Beyonce and Taylor Swift and Willie Nelson. We found out Josephine got accepted as a “Make a Wish” kid (stay tuned for more info as we have it). And, when we hit a slide, we steer into it. When we get a tantrum, we accelerate through it. When she is scared she’s getting poked with a needle, we calmly explain it’s ok to be scared. Use the energy. Bear down. Face it. Paddle faster. We got this. #ItsJoTime

-CHW