Night Ramble

There is something about blogging at night, usually I'm too tired but have so many thoughts in my head.  Always when I'm laying in bed or in the shower is when I think of something awesome or profound & 95% of the time I don't write it down & forget....so tonight since I'm a little hooked on the Falcon's game (again so happy football is back & Go Steelers;) I figured I'd write a blog---plus I'm overdue!

So this is my second week off work.  Last week I had all kinds of "big plans" in where I accomplished maybe 2 % because I ended up very sick.  Both Steve & I got colds, but mine turned into the usual miserable sinus infection.  Guess it happened perfect timing though since I was done with work I slept A LOT! Thankfully Steve is very patient with me when I'm sick & since he was a little under the weather he slept a lot more than usual also!  So now to my first REAL week out of work. 

With that starts the cooking mission.  When we initially decided I was going to leave my job we made the adult choice that we would be eating all meals at home with exception of special occasions to save money.  Little back story for you.  I grew up with the most amazing independent mother who hardly had time to cook for us.  She did such an amazing job raising us by herself & instilling valuable qualities in us---but (no offense momma;) cooking was not one of those.  So I of course through college was one of my few friends that was totally okay with eating oodles of noodles (ramen) or microwave mac & cheese.  This quality carried with me a little too long though.  So when I met Steve who was raised where his parents would cook most of their meals.  His mom cooked a lot (& I have a lot to live up to his mom can cook & so can his dad) which then lead to Steve being the cook.  So when Steve & I started dating he did all of the cooking.  Not even kidding---one of the ways he "won" me over was his ability to put the effort into cooking us meals that I could eat & that he always would go out of his way to take care of me.  He had an extremely hard time when he lost the ability to cook for us, not just because he married a wife who really couldn't cook---but because he prided himself in being able to cook for us & take care of us. Side note for those who don't know I don't eat meat other than seafood & even then I'm super picky with my seafood.  So with that I don't (didn't) know how to cook meat---like seriously at all.  Steve being the good hub would usually pretend that he likes whatever I cook---but I can tell when he doesn't like something.  When you are already battling the worst disease in the world, you can only fake you like something so much.  I've been learning, but up until recently we ate out A LOT.  So here you have it I've become a little Susie homemaker in the matter of a few months.  I clean obsessively now, cook/prepare all our meals, shop, use coupons, bake, make things, organize (that's right I said organize) etc.  *Sorry just got on a patting myself on the back tangent.*  I've had lots of help from lots of amazing people.  From people bring us food to give me a break, to friends coming over cooking with me to teach me new tricks, my new recipe box (thanks Brittany), family & friends giving me new recipes & ideas, my new crock pot (thanks to Steve's parents) & lots of encouragement I'm getting the hang of it.  It was an adjustment to planning meals & grocery shopping the right way but it's kinda gotten fun.  So this week we have Polish Monday I made homemade Perogi's & Halushki (kind of impressed myself), tomorrow is our usual taco Tuesdays, Italian Wednesday, Crock Pot Thursday, & a special addition of Fattening Friday.  

I will keep y'all posted on my progress---but just another example that seriously if you set your mind to something you can do it.  

With that a few things----#1. I sorta (half intentionally) let the cat out of the bag for some of the big things Steve & I have coming up.  I still can't FULLY give all the details but no worries you will get a full detailed blog very soon.  But with that I  would like to say to each & everyone of you thank you for rallying around Steve & I ALWAYS when we need something. I'm beyond touched by your generosity, your love, your ability to make sure Steve & I know each of you care if your own way.  I honestly believe that Steve & I are the most blessed people in the world.  Honestly, anytime I have a need friends, Steve's family, my family, even perfect strangers always go above & beyond & shower us with love & support.  I don't even know if I can find adequate words to explain the feeling.  But know that Steve & I are so grateful for every person reading this being in our lives.  

With that I have something that has been on my mind & while I have the motivation & time to blog I want touch on it briefly.  It has 2 sides.  One is to be a blessing & the other is to share a blessing.  As often as I say that Steve & I are blessed we then thankfully hear stories of how we have "blessed" others with inspiration, motivation, perspective, etc.  This is an amazing experience & I want to continue to challenge everyone to keep the movement.  Sometimes, this is important, you are the only positive influence someone has in their life.  This has come into play in my life both personally & professionally & I sometimes see it as a burden---but with perspective I can see it as a blessing.  You are in people's lives for a reason & you may not always get it right---but when you can you should be building people up.  Encouraging one another.  You never know you might be the only person that reaches out to someone.  You may just have the right encouraging word to say to save someones life.  Never take that opportunity for granted.  I have seen several times in my life where I've missed that chance & I am now more cognizant of it & hope to encourage others to be as well. 

With that---I know I am growing as a person as I learn the balance of "care giving" & "wife". There are a lot of times where I feel like I get praised too much by others.  It helps to be encouraged (see above;) but sometimes I feel so lost when it comes to care giving.  I am learning & I am growing through it.  It has been such an adjustment as I touched on earlier from going from Steve catering me (literally) to me being responsible for everything.  I knew going into it, but you never know if you are really cut out for something until you try it.  I will say through some of Steve & my aggravations I have learned so many other important life lessons. I've learned more compassion for other people, empathy, understanding, patience, the list goes on & on.  Steve & I have always been an amazing team but sometimes it gets easy to play on opposite teams.  This happens in every relationship regardless but add our special circumstances it can happen a littler easier. Through each of this & lots of long conversations & perspective we both have learned to see each others side so much more.  I couldn't even imagine asking someone to scratch something & them not getting the right spot---while it can be so easy to get frustrated it's so important to remember that finding that spot means so much when you can't do it yourself.  One of the things I have always said about Steve is that I love his passion & it's that passion that keeps us together, because even if we blow up at each other it's his passion to sit & have a very open conversation that keeps us going so strong.  So while everyone says that Steve is blessed to have me, which I will admit yes he is.  I am also very blessed to have him---he has given me a whole new outlook on life.  I feel like I am growing more & more into the person I've wanted to be & I have him to thank for that.  

I also have each one of you---blogging is very therapeutic for me.  I appreciate y'all continuing to follow our story in spite of my sometimes poor grammar & my tangents.   I appreciate everyone surrounding us with prayer, love, & support & for ALWAYS always rallying around us in time of need. 

We have lots of things coming up in October that I will be reminding you all of but I am tired & this blog is already forever long so for now Good night to all.  Be blessed & be a blessing! Lots of love always! xo

Organized thoughts (sort of)

Sometimes it takes me a while to blog because I'm unmotivated, or don't have much to write about, or I'm too busy, but this time it's because I've had so much to write about that I needed to get my thoughts organized.  Well at least as much as possible--- So I'm gonna break down some thoughts & some updates as well as I can ;)

First of all yay for fall approaching.  As much as I'm a warm weather girl---I LOVE everything about fall. Love the "cool" not cold weather, love the leaves changing, football, pumpkin everything, boots, tights, fires, festivities, etcetcetc.... With that being said we have lots & lots coming up this fall.  There are some I am unable to write about until after they happen, but I've been asking for prayer for some of these things & and am happy to report the prayers have been working & a lot of these things have been falling into place perfectly! Thank you for constantly sending Steve & I best wishes & praying for us.  I truly believe that it's everyone pulling for us that is helping a lot of things we've been hoping for work out.  So thank you!

So on to the things I can write about.

An amazing friend Lori, is throwing the HOPEforSteve Golf Tournament which takes place October 20th @ 1:00 PM.  Steve & I are so appreciative of every ones help with these amazing fundraisers.  It's truly heart warming when I see all the effort & planning people are doing to help us be able to survive financially.  Because of these continued events I am able to do what I need to be doing, taking care of Steve.  Lori is one of the kindest people I've met & I am so grateful that she is in my life.  She's a ray of sunshine :)

On Thursday I received a phone call from a med student in Suwanne, GA who doesn't know Steve or I personally but heard of our story & felt compelled to help.  His honors fraternity is planning a fundraiser for Hope for Steve as well in October or November.  He is to be sending me the details to this event this week so as soon as I know the details I will pass them along.

As most of you know we have been in talks of the Fear the beard pub crawl for Steve's 30th.  Steve & I were having the debate of the date because his birthday weekend falls on GA/FL game.  With that I will digress momentarily to tell y'all about our experience at the GA this weekend.  It was one of the best weekends we had in a long time.  We drove up Friday mid day & just spent the day enjoying Athens.  Love love that town---literally everything about it.  That night we went with lots of dear friends to the Georgia theater, which since Steve's graduated they redid.  He is now able to get to every point in the theater & it's amazing!  The bands were all amazing---the company was all amazing---it was a wonderful experience!  After a fun night out with little sleep we then get up for game day!!  Jen & Danny met us at the hotel & we started with bloody marries & continued on.  Danny & Steve then went off to enjoy the game.  It was like saying goodbye to my baby the first day of school or something (not even kidding) when Steve left.  But thanks to Jen & all the girls (& guys) I was able to enjoy some fun time & felt relaxed with Steve knowing he was having fun.  Boy it was a HOT day in Athens but seriously so much fun (for both Steve & I).  Steve & Danny had great seats but right in the sun---however they stayed all the way to the middle of the 4th quarter.  Steve was exhausted after---overly so.  He pushed it to the point that we had to cancel plans on Sunday & even today he's still recovering.  While we love to take Steve on new adventures we don't want him to overdo it.  After this with much thought we decided it's probably best for us not to do GA/FL this year.  With all that ramble: The fear the beard pub crawl will be on his actual birthday Friday October 26th.  Now that we have the date we will start all the plans & will send info out within the next couple weeks.

Update on Steve:  Steve's been doing pretty well actually, he has his days where he doesn't feel 100% or that he is "moody" but through that he is still doing great.  He's been using a cream that his mom & a doctor created for the past few months & it's been helping him a great deal.  It helps with pain or discomfort and also helps when his throat feels tight or even when he has spasms.  The cream has been helping him feel like he is doing his part to help him last longer & we can see the effects.  We've recently decided as a family to put it on the market as more & more people have been using it & requesting it.  www.neurolastcream.com is where you can go see more about the cream.  (Side note: I've been using the cream myself for when I hurt my back & got my mom & aunt on it as well) We've also been pumping Steve full of healthy fattening foods, lots of vitamins, & enzymes.  Since making the change to healthier foods Steve's been feeling more energized & has noticed some improvements.  We also had an amazing physical therapist, Lauren Polivka volunteer to come teach stretches & tricks we can use with Steve to help him stay more lose & comfortable.  This has helped tremendously.  Steve obviously still needs help with everything he does but with these aids things have been a little easier on him.  We are blessed that he is still able to enjoy all the foods he likes, he is still able to communicate, he is still able to move around & we hope with all these things we've implemented he will continue to be able to do these.

With all that being said---I've been thinking A LOT about happiness.  Without getting on a soap box I want to write a little about this.  As I've said before writing about these things is like therapy to me, so thank you to everyone who reads my rambles & gives me feedback.  I love receiving all the amazing messages, emails, notes from everyone & all the words of encouragement.  A common thing I hear (as does Steve) often from others is how we've been able to encourage & motivate people to live a happier life.  This is one of Steve & my favorite things is reading & hearing these stories from others.  It keeps us going & reminds us that we are helping people with our positive outlook.  I know those closest to us see us on days where we wouldn't motivate anyone---but most days we are on the up.  I appreciate hearing people saying how much they've taken our story & used it to improve their quality of life & I also appreciate seeing it first hand.  I have been thinking more & more about what makes people happy & I had to sort out these thoughts.  So here is my happiness according to Hope ramble. :)  For starters I believe a lot of people don't know what it is that will make them happy.  If you don't know what will make you happy---how do you find it?  Hear me out on this---people have ideas, but often when they do get what they thought was going to make them happy that happiness only lasts for so long.  On the contrary some people I see get it & I've been observing a lot of people & their happiness level & have come to learn a few things.  For starters the saying, you're only as happy as you make your mind up to be---IS TRUE! Seriously though think about it, in life you are OFTEN handed situations you NEVER could have prepared yourself for & while some people think when handed this they can never feel happy again.  Well, why not? Seriously why not?  Of course you can be happy.  I think that if everyone started being more happy with what they DO have & focus less on what they DON'T people would have more happiness.  This doesn't ever mean to stop thriving for more, but be happy with what you do have.  So often people focus on went wrong with their day, what they don't have, what they missed out on & forget to be thankful for what they do have.  It's funny the happiest people I know don't necessarily have the best situations but they made up their mind to be happy.  Everyone is capable of it---it may take some work---everyone is.  I think it's a balance of half knowing what will make you happy  & pursuing them & half of making the best of the unexpected situations that life hands that can help people lead a happier life.  Thank you for continuing to fill Steve & I with so much happiness by being in our lives, visiting us, calling/texting/emailing/mailing us, inviting us to fun amazing adventures, thinking of us, praying for us, & sharing your stories of filling your lives with more happiness.

Also, don't forget to get your Fear the beard shirts---especially if you'll be joining us for the pub crawl.  They are on the www.hopeforsteve.com website under the donate tab.  Also---please if you do want a tshirt let me know a size, color (pink/grey), & your address.

We love each & every one of you & thank you for adding to our happiness.  Now go find yours :)

When there's a will there's a way.

When there's a will there's a way. 

I wanted to write a blog about my new favorite quote ever, cause it's so relevant to our life.  We often get told by people when they see us out, that they are pleasantly surprised to see that Steve & I are out & about.  Like when we went to Wannee, I take him to the beach, dog park, etc.  I always respond to everyone that says something that when there's a will there is a way.  Steve & I aim to live our lives as normal as we possibly can & do as much as we physically can.  So the will to live helps us find the way. 

My Mom taught me this at a young age & always taught it in a religious & worldly way.  She would say if it's God's will there will be a way---and then would also say that if you set your mind to something that you want to do you will find a way to do it.  If you have the will there is nothing that can stand in your way.  That's true for anything in life---if you are willing to do the work that it takes, you can get far.   

This has been coming into play in my life so much recently. The Hope for Steve Roller Hockey classic is an example of this.  A wonderful group of guys that are amazing friends & supporters of Steve saw the need & put together such a fun, thoughtful, & amazing fundraiser.  Somewhere around 200 people came out to show their support & love for Steve.  I wrote in my last blog about me leaving my job, and God willing this fundraiser has given Steve & I a way to know that I can stay home and take care of him worry free for a few months until I find an in home job.  It was such an emotional & joyful day.  I couldn't stop smiling all day & couldn't contain myself with how touching it was to see so many amazing people out to support Steve & I.  Seeing Steve's face light up as he would see old friends, hear words of encouragement, & watch the hockey game made me overjoyed.  

When I first decided to leave my job I was having a full out panic---since then slowly more & more is falling into place.  It's one of those examples that when you are following the path you are meant to things will start opening up for you.  

If y'all don't learn anything else from Steve & I please learn this--that if you want something enough, work hard on it enough, & have the will to do it---it CAN happen.  Don't think too hard about it, it can be applied to even the simplest things, like knowing you want to lay on the beach with your husband & then pulling/pushing/tugging him through the sand anyway you can to get there.  Please just go out & live your life, enjoy it.  I don't mean to sound preachy but I have learned a lot about life, love, relationships, the world, & myself & through these experiences I have found I can dig deep within myself to do things I never thought I would be able to do.  I want to remind everyone that when you are faced with something & you make a decision to do what you have to do---you WILL find a WAY.  

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. 

Pump...Pump pump it up :)

Hey all!  Few things I want to state:

#1. Thanks for everyone who has been extra supportive of me the past few weeks---I've been having some moments of feeling overwhelmed---thus leading to me getting behind on some things---and I've been reaching out & needing lots of help lately!  Thanks for everyone being patient with me & always there at my beck & call! :)

# 2.  I am working on making HOPEforSteve a foundation---I've wanted to do this for some time now, but God is showing me it's time to do it NOW---this is a lot of work & I want to thank everyone for their help & also invite anyone who is familiar with the process to contact me with any tips or advice you may have!

#3. Don't forget we have HOPEforSteve bracelets & also now car decals---contact me if you are interested---these are easy ways to help spread awareness & get the word out about Steve. Visit  www.hopeforsteve.com if interested!  Also, continue to share your photos wearing the bracelets---I have a plan to use all these photos & need few more before I can complete the plan ;) 

#4. Some amazing donation of items have occurred & I need to give a special thanks to a dear woman Lisa, who works with ALS Guardian Angels for thinking of Steve & I and donating some great equipment: We've received a dinobox (speak easy machine for steve) as well as a lift to get Steve in & out of bed (SUPER excited about this) & some few other things in the works.  This is an amazing organization that goes above & beyond for ALS patients in getting them things they need to make life easier---I'm overwhelmed with gratitude for this amazing organization. 

#5. We've gotten Steve started with a bi pap to sleep with, as well as started using the cough assist machine & suction to help relieve some Flem.  These are amazing tools that were all donated to us & we are very grateful for not only the donations but finally having them working for Steve.  We have noticed a huge difference since Steve has been using these & it is the extra motivation Steve needed!

#6. Few things we have HOPEFULLY in the works that I want to ask prayer for---I can't give too many details about them just yet, but these things would help make things AMAZING for Steve & God willing they work out---could be the miracle we need.  Please be in prayer for these & I will update y'all as soon as I can. 

#7. Also, congratulations are in order for Steve's sister Rachelle for welcoming new baby Reese into the family---She is beautiful & Reagan is a great big sister---photo is blurry but still cute, hard with little ones to always get great photos but more will follow in the future:)

Well time to get back to tons of work just wanted to take the time to write few updates---will keep everyone updated on the hopeful things in the works as well as any other updates that come along.  Thanks for continuing to follow our journey & please continue the movement of love & hope.  Remember we are trying to spread the news of living your life to the fullest, loving those that are in your life, & being hopeful everyday.  We love you all & thank you for the continued support. 



Feed Steve :D

Feed Steve:

#1. Everyone has kinda gotten away from using the care calender---but I am going to beg & plea we start this again!! It was the best way to assure Steve has someone to bring him lunch---I have several people I use as "on call" but I hate for Steve to be at home wondering when he is going to eat & who it will be.  If everyone could please get back onto signing up on care calender whenever you wanted to come see Steve that would be a huge help to eliminate days whenever he doesn't have anyone.  Steve counts on people to be able to eat throughout the day & I know it helps both of us to know who is coming & when. Another reason is, is honestly I am unable to fully keep up with who is coming each day without this helpful tool....my mind has 199384 things on it on a day to day basis so please help me add a little more sanity.  If you are interested in visiting email me & I will forward you the instructions (thanks ERICA) to how to sign up.  They are simple & easy & if you are going to do several days that you know sign up for them in advance.  HUGE thanks for everyone visiting & helping with this. 
#2. Steve can no longer feed himself---he can do some things on his own but he will need help.  He of course is prideful & hates that he has to ask for help, so I will go ahead an eliminate all of that, if you are bringing him food odds are he needs you to help feed him. :)  He is doing a great job with eating still, and if we can continue to assist him in this I know he will continue doing a great job eating. 

****IMPORTANT***** As mentioned above I have step by step directions to use the care calendar please email me hope.ann.cross@gmail.com & I will mail you the directions.  Thanks. 
I have been saying for a while that I would provide a list of acceptable/preferred foods for Steve.  So long awaited---

• Carne saga beef tacos from twisted taco w/ rice
• Steak tacos from chipolte or moes with lettuce, salsa, & corn.
• Milkshakes always allowed---he prefers chocolate
• Cokes/Other sodas are allowed---but if you are bringing him a coke it would be great to include a water as he may enjoy cokes more but NEEDS water---he sometimes has a hard time with water so if you wanted to get a carbonates or flavored water he has less difficulty swallowing (preferred: fizz water (all flavors) & all vitamin water)
• Beer is allowed (preferred: Sierra Nevada, Sweetwater)
• Anything from the hot bar at whole foods or fresh market---know it's a little pricey and not conveniently located but it's super healthy & they have lots of high calorie foods
• Steve loves all meats---but don't want low quality meats---NO more waffle house, McDonald, taco bell, etc. (wahwah)
• Pizza is always welcome from anywhere---he will need monitored while eating the pizza to assure he doesn't choke on the crust---thin crust is easier for him to eat but sometimes regular crust just tastes better.  If so assure he has plenty to drink & takes small bites.  He likes Peperoni & plain cheese.
• Wings are welcome---I'm a little flexible with where from, but he likes medium with Ranch- & celery--again will probably need monitored & helped eating these.
• Burgers are always welcome if they are from a restaurant or cooked on grill----no more fast food burgers however as we want to monitor the quality of his meat. 
• He likes seafood---but is particular about what kind so use your judgment if it seems good quality go for it.
• Subway & Jimmy Johns---he likes Turkey subs---another one where he will need someone to sit with his as he eats to assure he doesn't choke on the bread.  He will need frequent sips of drink in between small bites. 
• Cookies---he LOVES chocolate chip cookies & Milk.  I try to force whole milk on him as it has more fat & calories but he prefers 2 %
• Potatoes--baked preferably loves them (loaded)
• Pasta---chicken pasta dishes, or seafood (LOVES clam pasta), or red sauce with meatballs or sausage. 
• Biscuits---with sausage or bacon or eggs---loves them
• If you feel like cooking---he will literally eat anything :) Mac N cheese, ribs, pasta salad, sausage, burgers, potatoes, asparagus, mushrooms, collard greens are some of his favorites :)

***I am sure I've left things out----so stay tuned for add ons but this is a good start so y'all have an idea of things to bring :)

Thanks again for all you do!! And stay tuned for another blog soon on more updates. Lots of love! <3

Cup runneth over...

Hi all :)

I know it's been a minute since I've blogged---& I need to step up my game with keeping y'all updated.  ::Insert ashamed face here::

I must admit I've been overwhelmed lately trying to stay on top of things---but no complaints here---it's a good thing.  Work is busier, people are ordering bracelets like crazy, lots of visitors, & lots of travel. 

I'm still amazed at how many people are viewing my blog & keeping up with our story & after some people have pointed it out my blog is being spread through Pinterest.---> This was my goal & this makes me happy :)  I am still shocked though that people are so interested in our story.  I'm glad that we are getting peoples attention as that is what ALS lacks is attention.  Too many people don't know what it is. SO I have a few updates & a little rant for y'all today.  :)  And another promise (yes again;) to try to blog more frequently.  :D And I want to thank each and every one of you who follow this & share it.  That's what we are trying to do is constantly bring awareness & I feel like Steve & I have the best army of support behind us!!

Let's start with updates:
1. Steve & I have been keeping busy---and we are so blessed to have so many people drop in on us daily.  Visitors always brighten our days :)  Thank you to everyone who has brought food, stopped to visit, came from out of town, let us crash at your house so we can visit, etc.  We appreciate every single effort you all put forth to keep us uplifted.

2. A wonderful amazing family who has their own experience of just how brutal ALS can be has donated us some extremely helpful equipment to help Steve with his fight.  This is the amazing thing of this disease----it keeps bringing some of the most amazing, supportive, & loving people into my life.  Steve & I are so blessed by the Burstein family for this & we are both so grateful for the extra tools to help Steve with his fight!
3.  Steve finally got to meet my childhood best friend, Cori.  For most that know me know Cori & I grew up being attached at the hip from 9th grade-seniors in college-to even now I may not see her all the time but nothing has changed.  Cori was to be my matron of honor in my wedding but the week of my wedding she was placed on bed rest---we've since tried to visit several times & somehow something always got in the way of making it to Tennessee.  Finally June 8-10 we were able to go spend some time with Cori, and let Steve hear some of our young stories!!  It was so good to see Cori as she helps refresh me with lots of positive energy & it was good to finally meet my little niece Alaina.

4. We got to spend some quality time with my family June 20-24.  I feel like we never get to see them enough but the time spent was amazing!  We of course kept Steve busy & wore him out a little, but my family loves him dearly & were able to help pump him up & help restore some of his positive energy---and mine!  It's always a wonderful thing to see my family & it's unlike any therapy/yoga/relaxation I could do---my family refuels me better than any of that.  I am blessed with some truly amazing family that supports me from afar & I am so grateful!!

5. A friend of Steve's Christopher Bayer made us some HopeforSteve.com decals for your car---we have some to give away to those interested in helping spread the word.  We will see how quickly these go & then we will order some to possibly sale.  For now we want to give them as a thank you to those who help support & spread awareness---but that may change depending upon how quickly we run out & how much they end up costing to send to everyone. 

Few reminders:

---the www.hopeforsteve.com page is updated frequently keep checking back for updates :) & please continue to spread the word, share it on facebook, twitter, pinterest, email, etc. 

---There are several AMAZING people in our lives that are working on fundraisers currently & we will be adding a current fundraiser page to the website to keep people posted in ways everyone can participate. 

With that----I wanted to write a quick paragraph on something I've been thinking about:

Yes I am about to stand on a soapbox and yes this is something I CONSTANTLY go on & on about---I know I am a broken record but this is a little bit different of a twist on this.  Again I'm going to talk about positivity & gratefulness.  Steve & I have been so blessed with being surrounded by some of the most uplifting & positive people around & for that I want to be sure I express my gratitude.  Without each and everyone of you this would be a lot harder of a battle for us.  I want to stress the importance of maintaining a positive attitude especially when you are around Steve.  Steve has been doing an INCREDIBLE job of trying to remain positive & keep strong while he fights this.  He has bad days of course where it's extremely hard to stay positive, but it's so important that instead of jumping on the negative train to try to build him back up.  Negativity is so damaging to people and especially to Steve.  Days where Steve is focused on the negative he feels terrible, low energy, his muscle spasm increase etc.  Whenever he is positive & upbeat---he has more energy, less twitching, less headaches/nausea, etc.  It's easy to feel negatively about ALS as yes it is an AWFUL terrible disease, but it is my plea that if you are around Steve that instead of focusing on the negative that you focus on the positive.  I am very annoying optimistic, but Steve admits (not talking for him---this is directly from him) that days whenever he is feeling low he needs the optimism, even if it is annoying initially to hear.  He has said several times that if it wasn't for certain people remaining positive around him---he would have lost it by now... I know I am hovering about what I will allow Steve to eat & what I will allow him to do, but it's for a reason--he is my number 1 priority & I want to keep Steve uplifted & positive so he can continue to live his life with happiness & joy.  Thank you to everyone that supports us & to all those who are so understanding of my rants & pleas!  It means so much to have such amazing support & understanding from so many that truly love us!!

I will be often this week as our rally of supporters, Steve, & I are working on some things in the next few weeks & will be updating y'all often.

Thanks again for all the love, prayers, support, & spreading awareness.  Keep it coming.

Lots of love <3