10.31.17 #PrayforParker

Once upon a time, many many moons ago there was this wonderful place called college. It was a magical place where responsibilities were nonexistent, memories were made, and friendships came easily. Tarleton was the best four years of my life.

Before Tarleton, even more moons ago, I grew up in the booming metropolis of Hico, America. Growing up in a small town, everyone had to participate in everything or there wasn’t enough people to do anything. We all played sports, we all were in the band, and we were always together. It was like this for most of the surrounding towns as well, so we got to know each other very well throughout the years.

Kristen and I grew up playing sports together in rivaling hometowns. I met Don’nell through intramurals and regularly kicked him off my court for being crazy. We kept up with each other through the greatness of social media and then one day as I was treating my moving crew to lunch, I ran smack into Don’nell at Chipotle. That was 2.5 years ago and we all picked up right where we left off. Since then we’ve celebrated a lot of life together and we even bought our home through Don’nell – it’s been a fun reunion.

Seriously y’all, these kids make the most beautiful babies. Having the opportunity to know them separately and now together with a beautiful family has been a true pleasure. First came Parker, then came Channing, and now we have Camden. Sweet, sweet boys.

On Tuesday, October 24th Parker was on day 3 of a stomach bug. Don’nell heard him moaning and found him throwing up on his back. Don’nell sat him up, asked him some questions and he seemed fine. Kristen went in asked him a question and he answered correctly. When Don’nell went to get him dressed to go to hospital he just went limp, head wouldn’t stay still, non-responsive. They called 911, but as the ambulance pulled in they had to do cpr because they had lost him.

Today is day 7 of being in icu fighting for his life. Parker’s brain began swelling due to the lack of oxygen and his MRI shows his brain may have suffered too much damage.

Day 3 update included: rhabdomyolysis (they are blood testing both parents to make sure it’s not hereditary), e. Coli – norovirus Brain swelling. All his organs are still working and He’s not quite breathing on his own. He breathes over the ventilator, but since he’s on so much pain medicine they don’t want to chance it right now. The plan for now: Fluid and the virus has to just run its course.

Day 7 update from mama: They will not be taking Parker off the vent today due to his X-ray. They will re-evaluate in the morning! He has been throwing up last night and this morning so for now they have paused the feeds and will try to restart later in the day. He has had his eyes open off and on a little more than usual! We LOVE to see those! He continues to move his arms when he is irritated and makes some small movements with his legs at times. Please pray he will be able to come off the ventilator, that his brain will heal completely, and that our family will be strong during this time! The brothers finally meet again! Channing could not have been sweeter!

This sweet boy needs your prayers, all of them. Please continue to cover Parker and his family in love and encouragement. Our God is bigger than this and he is the master healer.

For info on meal train and donations, click here.

10.30.17 Surgery Day!

Port Party is officially upon us! I’d be lying if I said I wasn’t a nervous wreck. My focus all last week was getting to the wedding, and now that the wedding was perfect I’m left without distractions. Look how beautiful the brand new Powell’s are:

(how’s that for distraction?)

I’ve never had surgery before, unless you count my wisdom teeth but I don’t know why you would, so this is completely foreign territory. To be fair, I’d probably be nervous even if this was my 10th time going under the knife. Not sure if I’ve told you this before but I have a compulsion to be in control, always. Kenneth loves this about me, ha! Surgery is the ultimate forfeit of control so hello anxiety, I’m Sunny…

ALS Sucks, you know that, I know that but we’re not going to let it hinder our progress. I believe that one day we will live in a world without ALS, so this is my contribution towards making that dream a reality. Radicava Ridiculousness continues. Anxiety and nerves aside, we’re doing this dance. Boomshakalaka

Can’t wait to show y’all my cool battle scar!

This weekend had nothing to do with ALS and everything to do with this gorgeous sister cousin of mine. So thankful to be part of her big day! Love wins, every single day.

10.26.17 Cat’s Outta the Bag

Last week I shared with y’all about some upcoming transitions that are coming up in the Erasmus house.

My last day with JA is going to be Friday, November 3rd. The decision to leave JA and file for disability is not an easy one, but the opportunity to focus on my family amidst this disease’s havoc on my body is one I am excited about. Kenneth and I have prayed for peace and confidence through this transition. I’ve never not had a job, and the financial change is terrifying but we are confident that God will continue to bless us and our family.

We cannot thank you enough for the continued prayers, love, and support that this disease continues to throw our way. We’re learning everyday what our new definition of normal is.

OF COURSE I’m working on a list of nonnegotiables that Kenneth and I want to focus on, both separately and together, that we haven’t had the energy or time to do while I was working full time and everything included in that commitment. Similar to the 30 by 30 list, I plan to put my list into view so that y’all can encourage, pray for, and remind me of the blessings that are included in this transition.

SunnyStrong is going amazing places, and this change is only going to encourage our growth and reach.

10.24.17 Why Does #ALSSuck ?

We’ve kicked off our Mudlove Campaign and so far we’ve done an excellent job of getting the word out. Now that we’ve started receiving our Mudlove products, let’s really make this campaign work.

Using a pic of your Mudlove swag, tell the world why #ALSSucks

Don’t have Mudlove swag yet? Get yours today!

https://www.mudlove.com/products/sunny-strong

For me, #ALSSucks because it robs my sweet husband of his fun loving, energetic wife. It robs my sisters of a lifetime of unconditional love and support against everything life throws at us. It robs my nieces and nephews of a fun aunt that knows all the good intel on their parents. It robs my my family of the “sweetest one”. It robs my friends of a future where we grow old together and tackle life head on, hand in hand. It robs me of the capability of being a good mom one day. It robs me of my ability to care and provide for my family the way I want to. It robs Ian and Baloo of a mom that plays the way they want to.

#ALSSucks because I’m unable to be the wife, sister, daughter, aunt, friend, family, future mother that I know I was meant to be. We have to cause a ruckus and create a world without ALS. We can do that through awareness, coming together to show the world why #ALSSucks for everyone enduring the havoc of this cruel disease.

Join me, join us – why does #ALSSuck?

Other ways to get involved:

Walk with us!

SunnyStrong Swag

Present Over Perfect

This book transformed my marriage, my personal and professional life, and my outlook on the future.

This journey has been about love, about worth, about God, about what it means to know him and be loved by him in a way that grounds and reorders everything.

Years ago, a wise friend told me that no one ever changes until the pain level gets high enough.

I have left behind some ways of living that I once believed were necessary and right that I now know were toxic and damaging—among them pushing, proving, over-working, ignoring my body and my spirit, trusting my ability to hustle more than God’s ability to heal.

And in the same way, I’ve always given my best energy to things outside myself, believing that I’d be fine, that I was a workhorse, that I didn’t need special treatment or babying or, heaven help me, self-care.

Now I know that the best thing I can offer to this world is not my force or energy, but a well-tended spirit, a wise and brave soul.

How many moments of connection I missed—too busy, too tired, too frantic and strung out on the drug of efficiency.

What would happen, what would be lost, if I stopped, or if I slowed down to a pace that felt less like a high-speed chase all day, every day?

I don’t operate in later.

You can use whatever term you want: besetting sin, shadow side, strength and weakness. The very thing that makes you you, that makes you great, that makes you different from everyone else is also the thing that, unchecked, will ruin you. For me, it’s lust for life. It’s energy, curiosity, hunger.

I’ve spent a lifetime establishing my role as responsible party. What that means it that I take care of it. And by “it” I mean everything. I troubleshoot, multitask, strategize.

Part of being an adult is taking responsibility for resting your body and your soul. And part of being an adult is learning to meet your own needs, because when it comes down to it, with a few exceptions, no one else is going to do it for you.

Busyness is an illness of the spirit.

As I unravel the many things that brought me to this crisis point, one is undeniably my own belief that hard work can solve anything, that pushing through is always the right thing, that rest and slowness are for weak people, not for high-capacity people like me.

At the same time, I was more and more aware that I was miserable.

And I was so depleted I couldn’t even remember what whole felt like.

I hope you live a life you’re proud of. If you find that you are not, I hope you have the strength to start all over again.

It had never occurred to us, in church-building or any other part of life, that someone would intentionally keep something small, or deliberately do something slow.

If I work in such a way that I don’t have enough energy to give to my marriage, I need to take down some chairs.

We decide where the time goes. There’s so much freedom in that, and so much responsibility.

was addicted to this chaos, but like any addiction, it was damaging to me.

My faith has not failed me, but I think maybe I have failed it.

In the same way that I didn’t allow myself to be taken care of by people, I didn’t know how to let myself be taken care of by God.

My crazy brain has always been my gift and my challenge,

a lifelong connoisseur of noise and motion and excessiveness of any kind.

The world will tell you how to live, if you let it. Don’t let it. Take up your space. Raise your voice. Sing your song. This is your chance to make or remake a life that thrills you.

I’ve preferred to believe that I can be all things to all people, but when I’m honest about my life, in the past couple years I’ve been better from a distance than I have been in my own home—I’ve given more to strangers

Only love feeds us.

You will always regret something. You will always disappoint someone. But it isn’t going to be my husband and our boys.

In recent years, I started to sense that I was being run by something other than my own voice and calling, something other than God’s vision for my life.

Our home is becoming more an anchor and less a place to land for a hot minute between work trips.

Sometimes brave looks more like staying when you want to leave, telling the truth when all you want to do is change the subject. Brave is listening instead of talking. Brave is articulating my feelings, especially when the feelings are sad or scared or fragile instead of confident or happy or light.

How much more beautiful is our God when we free him from our own wounds and tired narratives.

The chaos is all me, as much as I don’t want to admit it. I create it, am drawn to it, kick it up when things get too quiet, because when I’m quiet I have to own up to the fact that quiet terrifies me,

The natural world is so breathtakingly beautiful. People are so weird and awesome and loving and life-giving. Why, then, did I try so hard for so long to get away without feeling or living deeply?

Mine had gotten away from me. In my blind need to be seen as hyper-capable, ultra-dependable, that girl who can handle anything, I’d built a life I could no longer handle.

My to-do list drove me like an unkind taskmaster.

I was longing for a life that felt light, right-sized for my strengths and limitations.

Friendship carries all this mess together, so that you don’t have to hide, so that you carry it together. Because that’s what we do: we carry the mess together. Your mess is mine.

I’m learning to silence the noise, around me and within me, and let myself be seen and loved, not for what I produce, but for the fact that I have been created by the hands of a holy God, like every other thing on this earth, equally loved, equally seen.

Just because you have the capacity to do something doesn’t mean you have to do it.

I was not well, but I was very, very productive. And it didn’t occur to me to stop.

And I’m reveling in the smallness of my capacity. This is it. This is who I am. This is all I have to give you.

but this is the promise I make to my God: I will never again be so careless, so cavalier with the body and soul you’ve given me.

Be careful how much of yourself you give away, even with the best of intentions.

I believed I was invincible, that my body would listen to my mind if I was forceful enough with it,

Some of what I’m leaving behind in this season is the need to please everyone. I want to respect all people. I want to learn from all people, most especially people who are different from me and who disagree with me, but pleasing, for me, is over.

These days I want to love deeply and well, and that’s really different from pleasing.

want the stuff in my life to be light, easily managed, simple, so that the best of my energy is free for people, dreams, creativity;

You were only meant, created, commanded to be who you are, weird and wonderful, imperfect and messy and lovely.

I don’t want to get to the end of my life and look back and realize that the best thing about me was I was organized. That I executed well, that I ran a tight ship, that I never missed a detail.

I know some people think tattoos are insane or tacky or passé. But for me, these are the lines I’ve drawn in the sand—the daily, visual, tactile, with-me-all-the-time twin symbols for how I want to live, with great love and openness. These are the symbols of my future, of my calling, of my identity.

It’s from our souls that we love, that we feel, that we create, that we connect.

Are you tired? Worn out? Burned out on religion? Come to me. Get away with me and you’ll recover your life. I’ll show you how to take a real rest. Walk with me and work with me—watch how I do it. Learn the unforced rhythms of grace. I won’t lay anything heavy or ill-fitting on you. Keep company with me and you’ll learn to live freely and lightly. —Matthew 11: 28 − 30,

Because I was on a dangerous track, where I was giving the best of myself to people and things “out there,” while the tender inner core of my life and my home were increasingly stretched, pressurized, brittle.

Lilac Girls

Somewhere in a corner of our hearts, we are always twenty,” I said. How many times had Mother said that?

“The best of life is but intoxication,” Paul said, as he poured cognac into my glass.

“You have a choice. To wallow in the unfairness of it all or rise above it. Fix it. Let other people in.”

Jaws

“The fish broke water right beside the boat, with a great rushing whoosh of noise. It rose vertically, and in an instant of horror Brody gasped at the size of the body. Towering overhead, it blocked out the light. The pectoral fins hovered like wings, stiff and straight, and as the fish fell forward, they seemed to be reaching out to Brody.”

So, so good!

10.23.17 Port Party

Not to be confused with a porta potty

Round 1 of Radicava Ridiculousness is done, whoooo hoooooo! As promised, port placement is taking place before round 2 starts. We’re kicking off this “Port Party” on Monday, October 30.

Surgery should take about an hour and I’ll be back at work on Tuesday. No more IVs or ugly bruises, I’ll go to Soleo and get the port accessed twice during each round. 10 administrations over a 14 day period so each round will look different depending on our agenda during each round.

On Saturday, Kenneth and I enjoyed a night out with long lost friends and country music. This week is going to be epic as we finally get our Cass&SamP married off. Ready, Set, Go! Busy, busy week then surgery.

10.20.17 And We’re Walking

We are looking forward to this year’s ALSA Walk to Defeat ALS on November 4th at Trinity Park. Please join us either in person or as a virtual walker by registering here. Check in is at 9, the walk begins at 10, then we’re heading over to Capital Bar for the After Party from 12 – 4.

Everything is family friendly, food will be available for purchase from Magnolia Motor Lounge and Salsa Limon food truck, bar will be open, music playing, and we’ll enjoy the afternoon together. The After Party is come and go, and even if you can’t make the walk we’d love for you to join us! Capital Bar is graciously opening early just for us so let’s show our appreciation and watch the TCU vs Texas game (game time is still TBA) together.

SunnyStrong swag is available in our store: https://sunnystrong.ecwid.com/

MudLove Bracelets are available here: mudlove.com/sunnystrong

use code SunnyStrong on orders of $50 or more for free shipping.

I can’t wait to smooch on you! Thank you for loving me, us, through this disease. We love you so much!