12.30.17 Amazing Grace

Life comes at you hard and fast. Nothing could possibly prepare us for everything life has in store, in both good times and bad. This has been a year of firsts for a lot of our friends and family. Though we love on and pray for them continuously, as they continue to do so for us, we are never prepared when life ceases to make sense.

This song is a source of peace for many people facing all kinds of turmoil, myself included. Even in unsuspecting situations when this song comes on, or I bust out into my own song and dance show, it puts my heart at ease.

Did you know it was published in 1779? Or that it was first written to illustrate a sermon on New Year’s Day of 1773? How cool is it that with this iconic song it is unknown if there was any music accompanying the verses at that time ? Or that it may have simply been chanted by the congregation. You can learn anything from Wikipedia. What a great anthem to ring in the new year.

Amazing Grace, How sweet the sound

That saved a wretch like me

I once was lost, but now am found

T’was blind but now I see

T’was Grace that taught my heart to fear

And Grace, my fears relieved

How precious did that grace appear

The hour I first believed

Through many dangers, toils and snares

We have already come.

T’was grace that brought us safe thus far

And grace will lead us home

‘Twas Grace that taught my heart to fear, and Grace my fears relieved… Death of a child or a parent, especially, is fear like I cannot explain.

Twice yesterday I caught my heart in my throat. I learned that a woman I’ve met a few times in passing has birthed and buried her baby in the few weeks since I last saw her. Why do all babies not growup to lead full lives of amazing opportunities? Please add this family to your prayers. Of course my mind drifts to the sweet family I shared with you a few months ago. Why do perfect big brothers get taken away too soon? I miss Parker and the lighthearted humor his parents shared with all of us on his behalf. Please continue to reach out, love on, and cover this family in prayers as they navigate in a world missing this precious smile

The second time I caught my heart in my throat was during the funeral of my best friends father. Specifically when this picture was shown, to the Wade Bowen version of this song. I included it below for y’all to check out because it’s my favorite and so is Mr. Bowen. Gave me all of the feels, every last one of’em.

Death is an incomprehensible thing, what do you mean “they’re no longer with us”? How does that even make sense? Parents and babies are invincible, right? Isn’t that how it should be? When did we get old enough for this kind of stuff?

We love our Barden. We love everything he adds to our lives and marriage through his love and friendship. His Mama and Sister are pretty great, too. They raised a good one.

Thank God in Heaven he gives us this amazing grace to relieve all of our fears and cleanse us for his glory.

12.29.17 Zodiac Sign

What You Were Supposed To Learn Between 2016 And 2018, Based On Your Zodiac Sign

By Brianna Wiest, December 19th 2017

AQUARIUS

(January 21st to February 18th)

2016: You were supposed to learn patience. Some years are revolutionary, some are stationary, some just… are. This year was the latter for you, as things seemed to move slowly, if at all. Little did you know then, the gears were turning, it was all just happening beneath the hood (so to say).

2017: You were supposed to learn how to trust. This is a year that bridged the status of your life between 2016 and 2018, and it was built entirely on trusting people. Letting others into your sacred vision for business, love or life is not easy, but it is crucial. This year, you started to open up to potential you hadn’t recognized before, whether that was dating someone outside of your norm, or letting other people take on more responsibility at your job. Either way, it worked out for the best.

2018: You are supposed to learn how to coexist, and co-work, better than ever before. You’ve learned over the past few years that teamwork makes the dream work (ha, but seriously, it does). Therefore, it’s in your best interest to be the best partner and in some cases, boss, that you can be. This means honing in on your empathy, your compassion, and at times, your selflessness, all while holding true to a greater vision. It’s a challenge, but the rewards will be invaluable.

Originally posted on Thought Catalog.

Mine is pretty spot on for each year:

  • 2016 was a year of adjustment and preparation for major changes
  • 2017 has proven to be full of trusting a plan that I’m not in control of, and relying heavily on those around me
  • 2018 is shaping up to be all about challenges, asking for help, and balancing out my new “team”

What did you learn about your 16-18? Anything speak out to you?

12.28.17 HUGE First

2018 is setting up to be a year full of epic celebrations. I love weddings, everything about them is fun and exciting. Kenneth is learning to love weddings, since we have attended more than he ever imagined possible, or maybe we’re still working on getting his enthusiasm to match mine. Regardless he is a wonderful wedding date and we enjoy celebrating love.

This is part of my speech in Baton Rouge:

“Love is fluid, it can take on many shapes and forms. It’s more than a feeling, it’s tangible, it can be seen in actions, it can be transferred by a hug, it can be heard in a word. Love is my faith in a God who empowers me to love others because he first loved me. Love is smiles from strangers at the grocery store, holding the door open for me when we both know you’re tired of waiting on me to get there, and love is the investment in the success of others. With love, anything can be accomplished – the worst of days, the most devastating of diagnosis, and the feeling that the entire world is stacked against you.”

On Christmas morning I was asked to serve in a role that will be a huge first for me: I have the honor of presiding over the wedding ceremony of my sister, Casey, and my soon to be sister, Amanda. So, so, so excited!

So now to start reading, researching, and preparing for this amazing honor. Should I sing like in my other presentations? Crowd involvement is guaranteed. Bloody soldier costume like on Friends? No matter what, it’s going to be awesome. And this perfect boy is going to be a perfect addition, too.

12.27.17 Selfish

We’ve covered a lot of topics on this little blog we share together and I am forever in debt for your love, support, and prayers. Receiving my ALS diagnosis almost 3 years ago was life changing in ways we could have never anticipated: my reading preferences are different now that death is promised sooner rather than later, my research and curiosity drifts to topics I never felt important enough to acknowledge, and my days and nights are filled with realities that seem too harsh to wish on your worst enemy. Believe me when I tell you that there’s perks to this new life: princess parking, fun publicity opportunities, and a full time job of snuggles with a sweet puppy and fat cat.

I’ve always been a greater good person, what benefits the majority is preferred to personal gain, so receiving a terminal diagnosis wasn’t the end all, be all because no one is promised to get out alive, right? I’ve also always leaned more towards the optimism, looking for the silver lining, and appreciated naivety in all aspects of life. So having y’all to confirm my preference towards good rather than evil is what keeps my sanity at a manageable level.

What hurts me the most with this disease is not the loss of basic function, or the shortened life expectancy, or any other havoc ALS is wrecking on my body. My heartache is 100% this:

“This [ALS] can actually affect a patient’s ability to live independently and has a major impact on friends and family and their lives,” explained the chair of the Department of Neurology, Frances E. Jensen.

has major impact on friends and family and their lives, that’s the part that wakes me up at night in a panic. I can handle the destruction of my life, but Kenneth didn’t ask for this, Peyton didn’t ask for this, and no one else did either.

I hate ALS. For a million, trillion, gazillion reasons I hate ALS, with the number one reason being the impact of my incapacitated body on those around me. This is beyond the discussion of fairness, we know life isn’t fair. This is far beyond the boundaries of reasonable.

So is it selfish that I want to keep this disease all to myself? Not to share it’s destruction with those I love most. To keep it all confined for myself. Just this once, can I be 100% selfish? I am so, so, sorry.

12.21.17 And Theeeeeennn

I’ve been posting some pretty blah stuff lately, sorry for any worry or concerns. All is good in the hood, promise!!

So last week I got a call from Nina the Great that they got some info back on the Rasagaline trial. In case you forgot, I joined this drug trial during my second opinion appointment at UTSW andparticipated for a year. It was a double blind, placebo controlled study that was researching the idea that since this drug is FDA approved to slow the progression of Parkinson’s why not ALS? Because this drug is already on the market I could have gotten a prescription for off label use rather than getting it through the study, but where’s the adventure in that? Anyway, I found out last week that during the trial I was on the drug, not the placebo. Doesn’t mean a whole lot in the grand scheme of things but cool to think that I chose to contribute to science and didn’t waste a year taking sugar pills. Once I know the official results of the study I’ll share them with y’all.

And theeeeeeen today I got a call from the Hartford letting me know that I have been approved for long term disability. Definitely not something I would have ever imagined happening 3.5 years ago when I started at JA and checked that box during new employee orientation, but I thank God everyday for this provision. Saved our lives! Not too many almost 31 year olds who are thinking about LTD benefits out there, but I’ve never been one for going with the grain. Not entirely sure what would have happened if I hadn’t been approved but I know one sweet brown boy that would not be on board with me having to go back to work. We’re getting pretty good at this snuggle stuff.

And last on today’s list of “not blah” topics, while I was enjoying dinner with my best frannnns and our newly 6 baby love, my sweet sweet husband was home wrapping gifts, AND doing laundry, AND cleaning the kitchen. He’s my cherry pie! I hit the jackpot with this wonderful husband of mine.

12.20.17 Know Thyself — Before It’s Too Late

The Daily Stoic

“Death lies heavy upon one who, known exceedingly well by all, dies unknown to himself.” SENECA, THYESTES , 400

Some of the most powerful and important people in the world seem to have almost no self-awareness. Although total strangers know endless amounts of trivia about them, celebrities—because they are too busy or because it hurts too much—appear to know very little about themselves.

We can be guilty of the same sin. We ignore Socrates’s dictum to “know thyself”—often realizing we have done so at our peril, years later, when we wake up one day and realize how rarely we have asked ourselves questions like: Who am I? What’s important to me? What do I like? What do I need?

Now—right now—you have the time to explore yourself, to understand your own mind and body. Don’t wait. Know yourself. Before it’s impossibly late.

“Use today. Use every day. Make yourself satisfied with what you have been given.”