Monday, July 30, 2012

Adventures of HOPEforSteve :) Lots of updates!

Hey all!  Wanted to write a quick blog sharing about our trip & some new things coming up :)

Steve & I want to start this out THANKING everyone who has given us trips from the bottom of our hearts---it's amazing how much traveling helps Steve & I :)  It gives us joy & gets Steve out of his routine of constantly being home.  So thank you!

We recently were blessed to be able to take a week long road trip & I wanted to share a little about it.

 First place we were blessed to visit with a given away 2 night stay at the Blue Heron in, it's in Darien, GA.  This place is off the beaten path & SO worth it.  It's quiet, peaceful, & beautiful.  It's a bed & breakfast set up on marshlands in south GA.  The views were amazing & it's located close enough for us to have been able to go explore St. Simon's which was also amazing! Bill & Jan who ran the bed & breakfast are so welcoming & warm & they had a welcome dog Sassy to make you feel even more at home.  The breakfast was amazing also, & I now got a new sweet potato pancake recipe for all my new cooking adventures (which I will get into later:) Anyone needing a quick & peaceful getaway I would def recommend it :)




Our second stop was a gift given from Allison Potter, thank you again!! She was given a 2 night stay to Amelia Island & was unable to use it. It was really cool to be able to make a big road trip of this & see new parts of GA/FL we haven't explored.  We felt like travelers being able to go from one spot to the other---was really cool.  I stocked up on a ton of sea shells at Amelia Island as there beaches were covered with really pretty ones :)  Unfortunately this portion of our trip we got rained on both days---but it's okay any time out of the house somewhere near the beach & us being together is fun!  It was enjoyable to have a comfy room to stay with an ocean view & with the storms listening to the waves was AMAZING! :) We got lots of rest & relaxation here and enjoyed being able to rest without having anything to worry about!

The final stop was to stay the remainder of the week at the Dezember Condo near Clearwater.  It's obvious this is Steve & I's happy place as we try to go as often as we can.  Was amazing how breaking up the drive down by having the 2 other pit stops made the drive so much easier!  This part of the trip I was determined to get SUN! :)  Steve's parents made the trip that weekend also to hang out with us at the condo.  Was fun for us all to get to spend some time together stress free at the beach!  We got to see Lisa which is always nice unfortunately the last day Steve was feeling a little under the weather so we didn't make it back to see Dan, but no worries we will be back before too long.  We can't stay away from the condo too long! ;)  We successfully got nice & tan & were ready to head home to see the pups!  Always miss them being away for a week---but was SO nice to get away for a week :))) MUCH needed & MUCH appreciated for all that made it possible!







Isn't it always true that coming back after vacation it's much more difficult to return to the daily grind, but this was true plus much more.  Steve had a rough day Tuesday so I stayed home & did some paperwork from home that day & then leaving him Wed & Thur were heart breaking.  I broke down in tears multiple times those days.  Steve has a lot of difficulty doing ANYTHING on his own & that includes using the restroom---& when you gotta go, you gotta go but what do you do when you can't go on your own & there is no one there to help you?  It's been a while coming but I've had to make the tough decision to put in my notice at work.  As it's not fair that I leave Steve at home & go help complete strangers.  While I was holding onto this job for flexibility purposes---financially it isn't working out.  After lots of number crunching from Steve & I---we determined with the travel that my work demands it's financially cheaper for me to leave my job (as it wasn't paying enough at all & an in home nurse at this point is way out of budget) so I can stay home & take care of Steve instead of hiring someone.  After researching it was determined that even with Medicare covering a portion due to Steve still being in what they consider the early stages an in home nurse would cost more than I made in a month---with much thought & consideration we both decided it would be best for me to be home with him.  PLUS---I miss him while I'm away, I worry every second I am away from him.  Not a minute goes by that I don't wonder if he is OK, while we are blessed with amazing people coming & checking on him, it's now becoming unsafe & unfair for him to be alone.  It's also unfair to my job that I can't put 100% into my work & to myself that I am stretching myself so thin.  This is the best decision both financially & mentally & we appreciate everyone's support throughout this tough period.  My last day will be September 7th.  I have applied to several jobs where I can work from home & if anyone knows of any they could send my way I would also appreciate it, to have some back up. 
---> My Goal is to make HOPEforSteve a foundation---I want to be able to not only be home taking care of my husband but also want to help other PALS & caregivers as well.  This is something that I will CONTINUE to be working on over the next month as it is very time consuming. 

With that, wanted to remind everyone of some fundraising we are doing:

#1. Hope For Steve Roller Hockey Classic  This is a wonderful event that some of Steve's old hockey buddies have put together for us!  Words cannot express how grateful we are for this!  My momma will even be flying in to be apart of this special event :)  The event is August 4th, starting at 4 PM at

Pickneyville Park Roller Hockey Complex.  There will be a silent auction, food, hockey, & a HOPE for Steve booth set up with Tshirts, bracelets, & car decals.  
#2. We are still selling bracelets & car decals, but we recently added some amazing t shirts that Steve & I designed.  They will be sold for $20 a piece.  If interested go to www.hopeforsteve.com click on the donate tab & you will see where it instructs you to donate directly to Hope & Steve.  Please be sure to include if you want a male or female t shirt as well as what size.  We placed our first order & they should arrive the 1st :) I'm excited about them! 

#3. There are a few other fundraisers in the process as we speak that others have put together---as we get more details & dates I will update y'all :)

special thanks:
Just wanted to write a few thank you's:
*First of all again to EVERY single person that reaches out to Steve weather it's email, visiting, prayers, food, facebook messages, twitter, etc.  You all are amazing & I see that each time he gets a large amount of out reach he has better days--so thank you---you all are keeping him going :)  
*Special thanks to all of my friends/family that have been there for me lately.  I've had a stressful few weeks with trying to balance both work & Steve & home life & my health & my sanity & I need to thank everyone who has been there to wipe my tears, hug me, snap me out of a funk, teach me to cook new things, share funny stories, come visit, brought food, or just simply sent me a message telling me I'm doing great.  Without each of you I would have lost my mind a long time ago.  Thank you for constantly staying by my side even when I'm unable to be myself!
*I need to thank STEVE :) I need to say that Steve has taught me so much about life, love, & relationships but also taught me a lot about myself.  Steve is experiencing one of the toughest things anyone has to face & still he loves & cares about me enough to constantly check on me & if I'm okay.  He's very tolerant of my moods & understands (probably more than anyone) when I'm just blah.  He always has my back no matter what the situation, even if I may be overreacting he has my back.  He is so loyal & encouraging & when everyone would understand him being selfish & focusing on himself, he never fails to check in to make sure I'm okay.  Steve knows how difficult it's been with me trying to balance work & being home with him & was the biggest supporter in my leaving my job---Not just because he wants me home so we can spend more time together but because he hates to see me stressed out.  That is a huge testament to what a great person Steve is & I want to thank him!!
*Special thanks again to my sister for constantly keeping up with paypal & our website!  Jes is very quick to act with any updates or changes that need done & we are very grateful for her!
*Steve's friend from his old work Jordan, & the whole company recently sent us a wonderful envelope full of letters from his buddies from Technipower sharing stories how Steve has encouraged him.  This was so thoughtful & touched Steve & I both so much!  Thank you to the whole TechniPower team for never forgetting about Steve & always being there when we need you. 
I know I am forgetting people, but honestly everyone of you who are there for us & support us (you know who you all are) thank you---from the bottom of our hearts.  You guys are our fuel & we love you all dearly. 


5 comments:

  1. <3 we're here for you guys! please let me know if there's anything you need and i'll help however i can!!

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  2. Hope & Steve, you are both in my prayers BIG TIME! I'm Kent Carpenter's mom, Katherine. Steve may remember me at the hockey games, cheering on the guys while Kent's dad coached. Brings back such great memories and I'm so looking forward to the "reunion" game on Saturday, Aug. 4th at Pickneyville Park! Hope, I believe you made the right decision about your job. And we will pray, pray, pray that God provides you with the perfect at-home job. He is with you every step of the way and will never forsake you. Keep the faith - see you this weekend!

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  3. Hey girl, I'd live to make enough bracelets so we can make more money for you and Steve and ALS... Maybe we can set up a time when things aren't crazy where I can come over, make bracelets, sit with Steve and show you how to make them so we can sell more. Let me know your thoughts... Can't wait to see you guys this weekend! Its amazing how strong you both are! I have to remind myself everyday I'm lucky.

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  4. Thank you all so much! Can't wait to see y'all Saturday also :) And Jordan that sounds great---I'm in for sure have always wanted to learn to make them anyways! And thanks again for thinking of us :)

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  5. Hope,
    I know you don't know me but I've been thinking and praying for you and Steve for some time! I actually Met Steve at Windship Infusion Center as a patient many months ago before the "SaY Yes to the Dress Show" even aired. In fact, I was in the seat next to him and remember him having a laptop/ipad and playing the wedding video. He was so optimistic and friendly and I was inspired by him! I later was watching the episode of saying "yes to the dress" and realized it was the same person (I believe). He does go to Emory University Windship? I'd love to touch base with you to learn how he's doing recently. Also, I remember their was an older fellow getting treatment for ALS with a trial drug that provided some hope to both of them. Is that true? I had a battle getting on disablility too and it took me awhile and I hope you all have received that by now ( I will read through some other blog updates to see) but if NOT I'd be happy to share tips on speeding up the process and what worked for me (it should certainly work for him too). What a wonderful caregiver you are along with his family. I'd love to hear more. My email is LisaKatieT@aol.com and I'm also on facebook Lisa Thornton (and you can message me there). I can share more about my situation and he may remember me although it has been awhile and we've only had two encounters!!!! Many blessings to you!!!!
    Prayers,
    Lisa

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