8.31.17 Hello, is it me you’re looking for?

Have you ever had that feeling that everything you hear indirectly applies directly to you? Like you’re the kid in the back of the classroom of life and the teacher calls on you repeatedly? Or you catch the end of a conversation on the radio and you’re not sure why but in your heart you knew it’s exactly what you needed to hear? 

No? Just me? Ok, cool. 

This keeps happening to me. Just as soon as I convince myself that I’m being paranoid I get a sprinkle, or a song comes on, or someone sends me a message/pic/comment that brings that feeling back to the surface. It’s hard to explain, not really a guilty conscience feeling, more of a whisper of encouragement, a loving nudge from God that I need to pay attention. 
There is no greater feeling than having gentle reminders that the creator of the heavens and the earth prepping is your heart, mind and soul for what He has crafted for your future. These changes and the doors that are opening because of the changes aren’t what I would have ever imagined for my life, my marriage, or my future. Thankfully Gods plans are far greater than we could have ever dreamed. What an awesome Father we serve. 


This was one of the first sprinkles that caught my heart strings. Why do I let opinions/situations/worries weigh me down? Why do we get so caught up in expectations set by others?


You know who those people are in your life, the ones you would deter your friends away from if the tables were turned. The people who project their expectations and beliefs on you beyond your better judgement or desire, yet they insist on being forceful. 

“Traditions are often time-tested best practices for doing something. But remember that today’s conservative ideas were once controversial, cutting-edge, and innovative.” – The daily stoic, Ryan Holiday and Stephen Hanselman.

I think we can all agree that Kenneth and I are far from traditional, and together we embrace the changes and make this life ours. Together we make our marriage work, we acomplish tasks as a team, and we navigate through the new challenges of this disease. I am thankful each day for his servant heart for everyone around him and for our little life together. 

So our current plan of attack is learning to be more purposeful with our time together. Part of that plan is learning to say yes and no to plans, invitations, and celebrations – together. 

Will this event bring joy to our relationship? Will this invitation add avoidable stress on me physically and Kenneth emotionally as my caregiver? Is there a better opportunity to celebrate on a more personal level that involves less energy required from being in a crowd?

“Don’t be the person who says yes with their mouth but no with their actions.” – The daily stoic, Ryan Holiday and Stephen Hanselman.

My heart says yes to everything, double booking days, not giving time for adequate rest. I do not prefer to sit still, to miss things, but the recovery for both of us is getting longer and harder to avoid. Thankfully God found me a husband  that I can laugh with, consult with on decisions, and get to travel and experience and celebrate together. 

“There is more humor than hate to be found in just about every situation. And at least humor is productive—making things less heavy, not more so.” – The daily stoic, Ryan Holiday and Stephen Hanselman.

8.28.17 It was Leebo

The Murder Mystery dinner was a night to remember. Everyone had a blast, the food was great, the drama was hysterical and we all learned a new pickup line. 


Sunnystrong raised over $600 and raffle tickets are still available through 9.1. From the bottom of my heart, thank you to everyone who supported, joined as potential murderers, and has bought tickets online. Kenneth and I are blessed to have each and every one of you in our lives. 


Our table was completely wrong on who the killer was. We were certain it was Helvetica, the secretary, but we forgot about the only person with access to poison the deceased:


it was Leebo. And for the pickup line:


I promise, you do not want to miss the next one!

8.27.17 #29 – Check

Checked off #29 of the 30 by 30 list this week.

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Remember when I told you I found the coolest article? Where here it is:

brous wedding announcement

Had to do some rearranging but got the article and the picture of my grandparents all in one pic for my office. Here’s the final product:

brous for print1

I love love, I love weddings, I love black and white, and I love my grandparents. I’m so excited to have this piece of their love story on display. I miss him.

 

8.26.17 Who Dun It?

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Tonight is the big night! We’re excited to partner with the Midland Hotel and Alisha Earls from Killer Events for this fun event. Tickets will be available at the door if you are available to join us!

Shine on (1)

HUGE thank you to Cindy and JimBob Sims for sponsoring this event, coordinating the details, and for being awesome!

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Ultimate Marriage Goals

The Raffle will be open through Friday, September 1st! Buy your tickets online in the SunnyStrong store for the chance to win some awesome prizes.

Friendly reminder: Tshirt and koozie sales will close on 9/5. SunnyStrong store

Upcoming events:

9.16.17 – MDA Muscle Walk at Globe Life Park – Team SunnyStrong – Click to join or donate

11.4.17 – ALSA Walk at Trinity Park – Team SunnyStrong – Click to join or donate

8.25.17 ALS Celebrity Bowling Classic with Tony Dorsett

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Kenneth (middle) with Michael Young (former Texas Ranger) and Carly Patterson (Olympic Gold Medalist)

Last night was absolutely amazing. The place was filled with celebrities and ALS families, such a cool experience. Y’all know I’m social and extremely active on social media, but nothing replaces the love in a hug from someone who knows exactly what you and your family is going through.

“The club that no one wants to belong to is incredibly bonding. Perhaps because none of us wanted to join, we cling to one another.” – Option B, Sheryl Sandberg 

Kenneth and I had the opportunity to meet people from near and far that are connected to ALS in some form or fashion. We got to love on lots of PALS (people with ALS), share familiar experiences, catch up on life and love with friends. It was truly a life changing experience for both of us.

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Missing Mama Duke, my amazing Go Go Me girls: Ren and Chrissy

Prior to the Ice Bucket Challenge in 2014, PALS were isolated in their diagnosis. ALS wasn’t a disease that many people knew about or had even heard of, so many dealt with the effects privately. To each their own, but for me, it helps knowing there is a bustling community of love and support right at my finger tips. I use my quarterly clinic appointments as support group, I connect with PALS and caregivers with the hopes of learning from and supporting each other in this journey. For some it’s terrifying to see the progression of this disease in others, to preview what’s to come, or to be forced into a place of comparison and evaluation.

“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.” – Present over Perfect, Shauna Niequist

Last night was a perfect opportunity to listen and learn, to share our feelings of fear for the future, to be reassured that God is in control of it all. This community of misfits is family, and Kenneth and I are blessed to be a part of it. It’s easy to mistake my optimism as being naive, or as a portrayal of invincibility, but I assure you that is not the case. We are aware of the road before us, the hardships that are on their way as my body continues to deteriorate, and we know this is going to get ugly, BUT seeing families farther into the progression and still living life, loving on others, and embracing this community is comforting.

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Chie and Steve Smith – #MarriageGoals

God has a purpose for my diagnosis, and though I’d love to see the manuscript, I am here with an open mind, an open heart, and open arms to embrace those he places in our path. Thankfully, Kenneth is a good sport and is willing to cannonball into this community with me.

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I came out of the bathroom and my sweet husband was surrounded by beautiful blonde women that were captivated by him

“What matters is whether it makes your life better, whether it makes you better.” – The daily stoic, Ryan Holiday and Stephen Hanselman.

Our life is better for going last night.

8.23.17 National ALS Biorepository

Baloo Bear holding my hand after the draw


Apparently, I don’t need my blood for myself. Anything for science, right? PLM took 5 tubes Saturday while we were in Boston, and the CDC took 5 tubes yesterday for the National ALS Biorepository.

What is the National ALS Biorepository?

The term biorepository usually refers to a facility that collects and stores samples of biological material. These samples could include blood, urine, tissue, cells, DNA, and proteins. Some medical data may also be stored along with a written consent form. These samples may be used for future research.

This Biorepository may help scientists better understand the cause(s) of ALS. Researchers may be able to study the genetic variation in those with ALS. Analysis of these types of specimens has already proven useful in finding important genes related to ALS and other motor neuron diseases. 

 I’ve shared with you before my feelings on death and dying, and getting my advanced directive in place was on the 30 by 30 list. Now, I’ve signed the consent to be part of the postmortem collection. 

The donation of brain; spinal cord; cerebral spinal fluid; and pieces of muscle, skin, and bone. 

I am willing to donate anything I can if it means that one day no one will suffer from this disease. 


Prayers that ALS is only temporary, for all of us, our families, and our future selves. ALS sucks. 

8.22.17 Be Sweet to One Another


God knew exactly what he was doing when he brought all these sweet, crazy friends into my life. It’s important to support each other in every way, cover each other in prayer everyday, and always, always, always be able to laugh at yourself – and if you can’t, we’ll laugh, hard, for you. 

Few examples that have popped up in the last couple of days (without naming any names):

My germaphobe of a best friend – we’re taking doesn’t sit on the toilet anywhere, prides herself on her hovering ability, and goes through hand sanitizer like it’s water – found herself in flip flops, at the airport, going through security. Barefoot in a public space about sent her over the edge, but we were there to laugh her back to reality. 

Another example: a super protective, loving best frannn was so involved in getting me situated on a recent flight that she lost her phone. We dinged it, about 10 times, and could not for the life of us find it. We could hear it, dug through both of our carry ons and purses and pockets and could not find it. Finally resolved to give up because people were impatiently waiting for us to move out of the aisle, my best frannn sat down and found her phone under the seat in front of us. Laughing, laughing, laughing. 

On the same trip, my very, very skinny sidekick almost became a resident of Boston because he didn’t keep up. 

And even better, as we were boarding to come home my best frannn realized she didn’t grab her ipad after security. Full on sprint, lots of begging, searching, pinging and tracking she admitted defeat and retreated to the plane so she didn’t have to walk home. We discussed the likelihood that it would of course get returned, people aren’t that mean, and what else we could do to find it. She called when she got home, close enough to connect to her home wifi, and her suitcase was going insane from the zillion of pings we sent the ipad that was safely packed away. 

This last example has a backstory:

In 2014, we went to Costa Rica without doing much research, just excited to be away. We were standing in line waiting to enter the country and one of my amazing best friends asked, “is Costa Rica an island?” Hysterical laughing took over, especially after it was clear that not one of us knew the answer.  

Spoiler Alert: it’s not an island


So, flash forward to a recent trip and while were at the airport I saw a familiar face (surprise, surprise). Our conversation went like this:

Me: “are y’all headed to Boston?”

Her: “yes, then to Portugal for a week”

my response, and wish I was lying:

“oh, I’ve never been to Spain”

In case you didn’t know, Portugal is not in Spain


Laughing is cathartic, and having sweet friends to share those laughs with is even better. I thank God every day for my amazing support system that laughs with me, at me, and builds me up when I’d rather do anything but laugh. 

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.” – Shauna Niequist, Present Over Perfect 

8.21.17 Good Times Never Seemed so Good 

Boston was amazing. 

We landed late Friday, ordered pizza and tracked the protest so we could avoid it. Saturday started with the Patients Like Me blood draw then we set out to explore our surroundings. 

We ate and drank our way around the city and enjoyed a new experience for both of us: seeing a MLB game in a new to us stadium. The green monstah is as awesome as we were hoping. We joined the hecklers, we had so much fun we forgot to eat hotdogs, and we soaked up every second of being at Fenway. Sweet Caroline has never sounded better. 


Sunday we explored the riot-free areas of Boston Common before we flew back to reality. It was the great weekend of exploring, best frannn time, and contributing to research. I can’t wait to get back to Boston, the lobster was life changing, but coming home to my sweet boys and a home cooked meal put the cherry on the sundae of a fantastic weekend. 


Without an ounce of hesitation.