20. #MyGirlsAreBetterThanYours

Attending Tarleton State University after high school was a no brainer. I had been accepted to Texas A&M and Tech, but Tarleton fit everything I was looking for in a college and most importantly, staying close to home allowed me to be involved in my twin sisters junior and senior years of high school. Being too far from them has never been an option.

Tarleton was easily the best 4 years of life, and the friendships I gained there are as much a part of me today as they were all those years ago. The best part of the relationships that started years ago in Stephenville are the memories we’ve made since then. It’s easy to be friends, if for no other reason than that we were geographically connected, but as the years went on we had to be more intentional with our time together, planning hours of phone calls to discuss the most boring of topics just to hear the other person laugh, driving hours on end to spend one evening together. My girls are the foundation of who I am, and the absolute best thing I got out of my time at Tarleton.

In the spring of 2011 Kacy had the great idea that we needed to take an annual girls trip. For the first time in our lives we had the means and availability to venture out and see the world together. That summer, four adult-ish girls set out on the first of many adventures and spent a few days at Riu Palace in Cabo San Lucas, Mexico.

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From there we were hooked! Every conversation eventually veered toward where we would go on out next girls trip. Summer 2012 took us to Iberostar in Montego Bay, Jamaica.

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Summer 2013 we went to Barcelo Bavaro in Punta Cana, Dominican Republic.

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Summer 2014 we met and fell in love with our travel agent, Lora Wyllie at It’s Your World Travel. She changed our life and our travel experiences for the better. That year we stepped out of the crystal blue waters of the Caribbean and ventured to the gorgeous Riu Place Guanacaste in Costa Rica.

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Summer 2015 we had a decision to make: go new, or redo and do better. Lora called me one rainy, cold day in February and said “Can you swing one more day of vacation? It’s $7 difference if I bring you home Thursday vs. Friday so I’m leaving you there one more day.” We spent an entire week soaking up the sun at the Riu Palace in Punta Cana, Dominican Republic.

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Summer 2016 had an agenda: up our price point and flight time to prep for the BIG 30 trip in Summer 2017. Lora came to our rescue again and we couldn’t believe anyone would ever willingly leave Riu Palace Aruba. Easily the most beautiful beach I have ever napped on.

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Summer 2017 will be upon us soon enough. The BIG 30 trip might wait a year to let the baby of the bunch (Lisa Girl) catch up. Bahamas? A cruise? St. Maarten? the options are endless. We haven’t booked yet, but it will no doubt be another epic trip with my favorite girls.

Each trip brought new light to our evolution into adults – checking test scores, defying diagnosis limits, big moves, new jobs, broken hearts, and new love. We’ve met some fun, crazy people along the way that we keep up with on Facebook. Social media is truly a wonderful thing.

 

28. Big Kid Stuff

Nothing gives you the warm and fuzzes quite like completing an Advance Directive with your husband of less than 3 months. Fortunately this wasn’t a new conversation, or one that we haven’t had many times in various forms, but it still seems like a foreign concept, you know the whole death thing and all.

For me, like most things in my life, it’s about the opportunity to educate and doing what I can to alleviate any and all doubt, blame, heartache that accompanies making decisions of this magnitude for someone else without them being able to voice it for themselves. Type A, control freak – but we all knew that about me. It’s really been interesting to have this conversation evolve with each episode of Grey’s Anatomy that Kenneth and I watch; would you want that? if that was us, how would you want me to proceed? and so on.

I’m a blunt and straight forward person (understatement), so this conversation started when I was 15 going through drivers education. My mother and I would discuss the “what ifs” of driving, accidents, and life in general. We are in the same boat as far as no extreme measures, no diminished quality of life, etc. but it’s easy to talk, an entirely different ballgame to execute. I would hate for anyone to have guilt over a decision that I would have made for myself if given the opportunity, hence the importance of an Advance Directive.

I completed this document at my very first ALS clinic, with my mom, Dawn, and Mr. America (Luke) there to support me. Lots of changes have taken place in two years, I met an amazing man and made him my husband. I can still remember telling Kenneth about my ALS on our second date. I had casually played off my terrible bowling score on our first date so that it wouldn’t be tainted with the truth, and then crying two months later as we were getting ready to ‘ring in 2016 as a couple, begging him to get out now if he wasn’t in it for the long run, judgment and blame free, that this was going to get worse before it gets better and that better is death. It’s a lot for a new couple of 20 somethings, but we continued and look where we are now? Married almost 3 months and planning our end of life directives, yay!

I’ve always been conflicted on burial plans: the idea of being buried seems wasteful and constricting; the idea of being cremated seems more logical than being in the ground, but then what? I don’t want to be on the mantle, or in someones closet, or scattered. Weird. Death is weird. My Brett family has always donated their bodies to science, and that makes the most sense to me. It’s my hope that there isn’t anything left after my organs are donated, but ALS is a sucky, mean disease and I’m realistic enough to understand that any organ donation will be a blessing. The idea that my body, after years of trial and error, years of wear and tear, and ALS could benefit the world in some way, science in some fashion, is enough for me. I know where I’m going when I’m gone, and I don’t need this bag of bones when I get there so anyone that can learn or heal from it is welcome to it.

Here is the link to the Texas Advance Directive

Each state has their own form, so make sure you have the one that correlates to your state. You don’t have to get it notarized, but you can, and there’s places to detail your wishes. I think it’s funny that you can name your decision maker or “Agent” without having to obtain their signature or social security number, like “Surprise! You’re the sucker who gets to pull the plug, sorry I didn’t get your permission”.  You can also read about hospice care, grief, and other info on that site.

“Dying was a part of living. You had to keep tuning in to that if you expected to be a whole person. And if the fact of your own death was hard to understand, at least it wasn’t impossible to accept.” Stephen King, The Shining

When did we get old enough to think about stuff like this?

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14. Weekend Warrior: Party of 1…er, 2

Again, I find myself saying that “I had different intentions for this one and God stepped in…”. Pretty excited about this shift 🙂

I get an entire weekend with my husband, a stay-cation per say. We have not had an agenda-less weekend since before the wedding so this is huge. Why spend a weekend solo when I get this good lookin’ man all to myself with no alarm clocks or to do lists?

 Rumor has it we’re going to knock out some of my “30 by 30” and sleep in, so stay tuned for either really fun and exciting posts or ones of the cat – at this point it could really go either way. Excited to see how it plays out 🙂

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1.20.17 (tomorrow) is 2 years since my ALS diagnosis, so we’re for sure starting the weekend on a high note celebrating life, love, and our endless pursuit for a cure. ALS sucks all day, every day and I’m blessed beyond comprehension by the continuous support and love from everyone. Thank you for loving me through this ❤

 AMAZING WEEKEND! Spent Friday celebrating life and love at Heim BBQ then to a movie. If you didn’t know, I am a Toms fanatic. The gorgeous gold ones above are from my mother-in-love as a Christmas present.  Also, my gorgeous friend Jess got us all hooked on Diff Eyewear, so this weekend I finally got to debut my new Diffs.

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Kenneth and I slept in for the first time in what felt like forever, then went to Autobahn where I got to knock off number 23 on my list.  Easily one of the coolest things I’ve ever done: drive a Porsche! And then my husband bought me the best 30th birthday gift ever!

Sunday was easy: church, lunch with family, then went by to hug my Grandma Nancy because it was the 3 year anniversary of my Grandfather’s passing.

Wasn’t a weekend warrior, or a party of 1, but I made some great memories with my sweet Husband and that’s pretty fantastic.

29. Brous

2014 was a rough, tough year for me. I lost both of my Grandfathers, one in January and one in July, and it rocked my world. Without torturing you with the details of my estranged father, these two men were my foundation, the men I measured all men against, my favorite guys. Losing both of them brought heartache like I’d never experienced, growth that only comes from soul shattering devastation, and a new found appreciation for life.

When my Grandpa Rusty died in July 2014, it was a completely different experience than that of Papa’s passing earlier that year. Rusty’s was sudden, unexpected, unnecessary. One day here, joking with friends, the next gone leaving a gaping hole in our family. My mom’s side of the family donates their bodies to science, something that would later give me the courage to pursue clinical trials for ALS. A wonderful, funny memorial service that Rusty would have loved. Later in August we had a memorial at the country club where he and my Grandma Houston were charter members, familiar faces, and regular golfers. At this service the members donated a bench in Rusty’s name, dedicated the hole that he’d hit 4 of his 7 hole in ones on to him, a physical reminder of the mountain of a man who enjoyed nothing more than a place to sit down.

At this service at the club I got a copy of an old newsletter from June 1991 when my grandparents were both named “Member of the Month”. It’s a great piece that I framed and have in my office.

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Naturally, now that I have this great piece from my Brett side I want something cool to include in my office that honors my Brous side. My Papa was a gracious, supportive, highly involved man and I attribute many of my social skills to him. When he passed it was expected, fell on Friday and passed on Wednesday from multi-organ failure. It was his time, his health not the greatest, but still Earth shattering for me. His passing opened wounds from my father that my 3 sisters and I had buried and ignored for many years. It was hard on everyone.

Sunday 1.22.17 was 3 years since he’d passed so I was anxious to get moving on this project, find that piece that I’ve been searching for. He was a hoarder in the documentation department, and Grandma Nancy and I had the chance to dig through his personal files and look for whatever it is that I need to complete this project. I didn’t find what I think I’m looking for, but I’m not giving up that easy. I look forward to sharing a unique piece of my Brous roots with you, once I get it together.

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25. Dark Places

Care to read with me?

“I assumed everything bad in the world could happen, because everything bad in the world already did happen.”

“She talked to me because we had the same chemicals in our blood: shame, anger, greed. Unjustified nostalgia.”

“I’d earned my money, I thought, resentful for no reason. Lyle seemed completely fine with paying me. That’s what I did, though—I had angry, defensive conversations in my head, got mad at things that hadn’t even happened yet.”

“She never wrote Mommy, I thought, we never called her that even as kids. I want my mommy, I thought. We never said that. I want my mom.”

“But I’ve just never been good at directions. Like, if I reach a fork in the road, and I can take a right or a left, I will choose whichever is wrong. Like, I should just listen to my gut and then do the opposite. But I don’t. I don’t know why that is.”

1.24.17 Holy moly, this book had my undivided attention from the beginning. You will not regret this read

22. Night Owl, Late in the Morning

For long as I can remember, I have been a night owl. It never mattered how early I had to get up or how little sleep I’ve gotten days prior, I have always been a late to bed person. Some will argue that this is the source of my regular lateness, but I assure you that me being late has very little to do with what time I get to bed.

The difference now is that there is a persistent, whiny boy who refuses to go to bed without me; his name is Ian and I’m lucky he lets me live here 


My husband doesn’t mind going to bed without me and sometimes I think he prefers it (rumor is that I snore), but one of the major driving forces behind the 30 by 30 is to become more intentional with my actions. My husband and I are very busy people, lots of moving parts, and completely different agendas so for us to end our day together by crawling into bed is huge. He balances me in ways I never imagined a man could, and thankfully one of those ways is that he likes to be early to bed. 

I’m out numbered and that’s ok. With all this extra sleep I can finally figure out how to get places on time, hopefully…

11/17: it’s 11:21 PM as I share this with you, but just in case it helps anyone else I didn’t want to wait. Kenneth and I are trying Olly Restful Sleep gummies. I’ll report back how it goes 

19. Prayers for my Husband

Care to read with me?

I was never one to dream about my wedding, the colors, the details, etc. I always dreamed about my future husband: would he be tall? would he want kids? would he be funny? For me, it was always about who I would marry and spend my life with so planning a wedding in 3 months had it’s challenges. There was no plans dreamed up at an early age, there was no fantasy location, there were no requirements. Being the Type A control freak that I am, I took care of the parts that I would lose sleep over and outsourced the rest. I am surrounded by amazing, creative, bossy women that stepped up and made our wedding day absolutely perfect.

My husband and I chose to exchange gifts prior to the ceremony and this book was my gift to him, along with the Prayers for my Wife book as a vow that together we would be in constant prayer for our marriage, each other, and our future. I wrote him a note that detailed how I’ve been praying for him for as long as I can remember, how I’m excited to have him to pray for AND with as we started our life together. Never in a million years would I have dreamed to marry a redhead, or a South African, or a golfer but God has a sense of humor and knows exactly what he is doing. God blessed me beyond belief when he created Kenneth Robert Erasmus, and I thank him every day that he chose me as Kenneth’s wife.

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17. Voice Banking

We can all agree that ALS sucks: it sucks the life out of it’s victims, sucks their independence away, sucks their future, just flip’n sucks. One of the hardest parts for me to grasp and come to terms with is that one day I will not be able to open my mouth and talk. Just talk. Talk about my day, talk to my husband, tell him “I sure do love you”, talk to my cat, talk to anyone about anything. I talk, I’m a talker, we all know this, and the thought that one day in the closer than comfort future I will not be able to do the one thing that has always come so naturally for me, well that just sucks.

Luckily, there is a phenomenal thing on my side: technology. Kenneth and I watched the Gleason Movie last night, and one thing Steve said was that technology has the ability to give back all of the things that ALS takes from you. I did some research (understatement) and found the ModelTalker System. From their site, “The ModelTalker System is a revolutionary speech synthesis software package developed by the Nemours Speech Research Laboratory and designed to benefit people who are losing or who have already lost their ability to speak. It allows people who use a Speech Generating Device (SGD) to communicate with a unique personal synthetic voice that is representative of their own voice.” So, as my Drunkle Sam said, “You’ll be able to cuss at us in your own voice”.

This is a really cool thing, I login and complete exercises that are stored in an online database that I will be able to have uploaded to my communication device of choice when that day comes. Thanks to the Steve Gleason Act, many people will be able to have this basic right of speech covered by Medicare. I am grateful that this technology is available, even if somewhat robotic, it’s still a little part of me hollering through the speakers.

According to the site, it takes a strong speaker around 6 hours to complete the exercises. They encourage you not to do it all in one sitting (thank goodness) and to do it first thing in the morning when your voice is strongest. Problem is: who has that kind of time? This is something that is going to be intricately worked into my daily routine. I know  I will appreciate having this one day, but right now it’s a pain in my butt. I’ll get it done, not by Saturday but it’ll get done. I promise.