Deep thoughts from Hope

Just wanted to write a quick update on the job situation & some thoughts I was having. :)
I am in the middle of working on 192839 things so this will be a short deep thoughts from Hope today :)
I am a true believer that everything happens for a reason--and things keep reminding me of this.  I know I mentioned I was having second thoughts about staying with my current job because of some of the rough clients...however, after actually getting a job offer to a full time 8-5, benefits, good pay; I had a panic attack, and had to do some deep thought about the value of my life.  My husband is my #1 priority and I took this job because it offers me the flexibility that is needed in order to be able to be home with Steve more & if an emergency happens I can come home to him right away.  All the money in the world couldn't make me give that up right now.  I can't see going to an 8-5 with no upfront vacation or sick days and not be able to take days off when Steve needs me.  Also, with this job all my paperwork can be done at home---I can't give that up.  It's a sacrifice, but money is not the #1 importance in my life.  I know we need it, and I know we will have to make sacrifices, but I love my husband and he needs me.  After thinking of all this & realizing I was going to suck it up & make the job work & do it with the best of my ability I thought of "what am I to be learning in this job?"  Thanks for your prayers & continue to do so for me to remain safe :)

With that comes deep thoughts from Hope. :)

I have been through a lot in my lifetime, and I often think that God has put me on this earth to help people.  He has put me through things to help me learn lessons, learn how truly strong I am, & to be able to help others who may be going through something similar in the future. I truly try to live my life to help make a difference in the world.  I have my completely selfish boo hoo moments, but I try to be grateful for what I have everyday.  I truly try to live my life with Joy & not get bogged down with negativity.  Sometimes this causes me to have to make decisions that may not make sense to everyone else but as long as I truly feel at peace with my decisions, that is all that matters. 

I have been thinking about what lessons I am to be learning with this current job, and it's this---to keep me humble!  In all honesty, the majority of my clients (there are always those few extra challenging exceptions...haha) bring a lot to my life.  They teach me something daily.  There are so many people out there hurting that desperately want help & I think it is our responsibilities to help those the best we can.  Every time I have a good session with one of my clients it makes the loads of paperwork, underpaid hours, and sometimes really difficult clients worth it.  Also, the majority of my clients have a lot of HEAVY things happening in their lives yet they always seem to great me with a smile & always saying, "Can I get you anything Miss Hope? Glass of water, coffee, soda?"  Here are these people who have nothing & they are offering me coffee or soda & greeting me always with a smile. 

We all go through hard times but if they can greet me with a smile & politeness, why can't I?  SO there you have it deep thoughts from Hope.

ALSO---some additional updates:
---Bracelets. We've ordered HOPEforSteve bracelets that we will give with a $10 donation.  We wish we could give them away to everyone, but the cost of buying & shipping always gets in the way.

---The donation tab is back up & running---woot :)  Thanks to my brother Zac for getting it started & my sister Jes for taking the time to sort out the problems we were having!
---www.hopeforsteve.com has been updated with lots of new things. Take a look around & please share it.  My sister Jes has spent a lot of time with this website & is constantly updating it. 
--Thanks for all the prayers for Steve, we ended up canceling a weekend getaway for him to continue to rebuild strength.  He is feeling much better & is eating like a horse again ;)

As always lots of love & thanks to all who support us <3

Harsh truth.

Would you wipe your husbands butt?  Or let him throw up in your hand?  Stick your finger in his mouth to pull out flem? or blow his nose for him?  I'm sure most of you if the situation presented would do it, because if you love someone you do anything you can for them.  Ever wonder what happens when someone with ALS gets sick?  They already can't take care of themselves & then they are faced with sickness.  Imagine feeling like you have to throw up and knowing you can't get yourself to the bathroom.  Imagine you are going to the bathroom & you can't wipe yourself.  Imagine that when you do throw up you have the extra worry of choking on your vomit or losing too much weight.  This is the harsh reality that ALS patients have to deal with, and after seeing my husband go through such a rough night it puts everything into reality.  It's not fair that people should be facing this harsh disease with no cure or treatment.  This is why awareness is so important.  Don't hear me complaining, because I love my husband and will do anything for him, but hear me pleading.  The previous blog I gave a list of things you can do to help, please do them! There is hope for ALS, there is hope.  There are many studies that show they are close to a treatment---but we are running out of time.   If enough people show interest they can't ignore us---Something needs to be done---& something needs to be done NOW. 

Please be praying for Steve to be able to feel better at least enough to eat today.  He's surprisingly in good spirits, but I think that's because I'm home with him.  It's nice to be able to be home & take care of him when he needs it & I'm extremely grateful my job understands.  He won't be needing any visitors for a few days other than family since he's sick.  I will let y'all know when he's feeling better & up for company. 

Thanks again for the prayers and support and love.  <3

How you can help

The out poor for help has been amazing & I am so grateful for those of you that are supporting us & there for us!  Y'all keep us going & we are so lucky!! I've gotten a lot of people questioning what they could do to help, so Steve & I wanted to write this blog. 
1. Pray for us, send warm wishes, send positive vibes, etc. These are so important for our moods to stay uplifted---thank you!
2. Awareness. You can do this so many ways.  We just ordered HopeforSteve bracelets for this reason, for everyone to wear them( *plan to give them with $5 dollar suggested donation, however would accept whatever anyone could give) & hope people ask you about it.  You can share statistics & ways to help on facebook, twitter, Googleplus, etc.  Talk about it, write about, sing about it, paint about it---do anything just spread awareness. 
3. Visit this link to see a 31 easy things you can do to help. 
4. Visit Steve, I know that most people's schedules are hectic so whatever time a day you could come visit Steve would be great.  None of us that aren't in his situation can understand what it's like to be in his body & not being able to do things on his own.  It's nice for people to stop by as it's not easy for him to get out & about.  It keeps him uplifted & helps keep him positive.  I don't think I could say that enough. :)
5. Visit www.hopeforsteve.com , share it, blog about it, tweet it, talk about it!
6. Write a letter to the legislative priorities. Make them aware that we are paying attention to the problem & that it's time they step up & do their part!
7. Donate---whether or not it's to us or ALS association.  Here's reasons why we need donations & why ALS association needs it.  Steve has YET to receive a disability check, he has had no income coming in for 6 months, we've gone through all of our savings paying for not only everyday life costs but the added costs (medications, special diet, vitamins, supplements, special amenities, etc), but also Steve is missing out on several things he could be benefiting from (physical therapy, massages, clinic, specialized yoga/workout/swim exercise classes).  The ALS association needs donations to continue their research.  We are an incredibly advanced society so there is no reason they can't find a cure.  However, like everything all this research is expensive.  The ALS association also tries to offer help to those in the community that's been diagnosed with ALS, but with low funding that help isn't always available. 
8. I think until enough people complain & make it known that ALS needs attention thousands of people will die before it's there time.
9. To those that have been cooking & bringing food we are so appreciative---good news Steve actually gained 5 pounds so it's working! :)) We are however making a few changes to Steve's diet---we are trying to chill out on fast food/unhealthy food.  We still want Steve to eat plenty of calories---but we want him doing so in healthy ways so that he can continue to provide his body the necessary nutrients to try to rebuild itself.  With that said Steve will def. still need help with lunch but instead of having to buy him something--I'll have lunch here just needed to be heated up & given to Steve.  However, Milkshakes will always always be welcome. :)  He will continue to drink the super fattening, yummy, high calorie, just not good for you shakes each day but the meals are going to be a lot more focused on high calorie & high health benefits.  Fast food is the easy way out---Steve can't do easy way out anymore.  He needs to be eating for a purpose & that purpose is to give his body as much nutrients as possible.
10. Live your lives & follow your dreams---focus on positive & make positive changes.  Steve & I are touched each time we hear someone tell us how we have touched their lives (how we have touched their hearts, changed their way of thinking, made them focus on living life, etc.) Please continue to be motivated & inspired---and pass on the inspiration to others & continue the movement.  And continue to bless us with your stories & experiences, please!

Hope for Steve

Few quick updates. :)

1. A dear friend Jen made a HOPE for Steve logo that's been added to the HOPEforSteve facebook page & will be seen all around soon :)  So thank you Jen for sharing your talents with us!  We are blessed to have you & Danny!

2. My sister Jessica built us a website. She put in so much effort & is continuously updating it.  If you have any feedback please feel free to share as it is a work in progress.  I am so appreciative of my sisters efforts & it looks great so far!! This will help it be easy to link all of our updates in one place to make sure we are reaching everyone that cares! Also, we hope to spread awareness of how much attention ALS really needs to be receiving!   Check it out:  HopeforSteve

3. Steve is still home most days alone (thanks again to everyone who has been visiting) & he really enjoys company.  Even if you don't want to bring lunch a drop in visit helps keep his spirits up.  I stress ALL day while I am away if he is alone.  It's very difficult for him to be able to do much without help so knowing someone is checking in on him---brings me peace & helps him stay positive. 

4. Steve recently got an electric scooter wheel chair.  It.is.awesome.  We are very grateful for this & we are currently researching trailers to attach to our Escape to be able to assure Steve can get around still.  Any suggestions would be appreciated. :)

5. Have you seen Steve lately?  He's sporting a super awesome bushy beard :)  Which I LOVE!

6. In April I took a job change, to a job that was community mental health that allowed me a great deal of flexibility.  Fortunately it has allowed me some more time at home unfortunately it is not a good fit for me.  Although I love helping the under served population at this time, it puts me into a few too many unsafe situations.  I am currently seeking new employment.  Prayers would be appreciated to find something that pays well, allows for some flexibility, & is safe! 

OK---I'm super behind on some reports so I need to keep this short, but wanted to write a quick update.

Here are a few miscellaneous links I wanted to share.
Join our HOPEforSteve team for the ALS 2012 Atlanta Walk in October. Lots of time to fundraise & spread the word
A remind of the happiest day of our lives :)
www.hopeforsteve.com

Update with Love

I have to admit, I am still overwhelmed by the response Steve & I get with people following us & reaching out to show love!  It's amazing & motivates Steve & I to remain positive.  I know I've slowed down on the blogging (adjusting to a new job--where it requires a ton more paperwork) but I wanted to write a quick update.

First of all for everyone who has participated in the past fundraisers---thank you for blessing us with your monetary gifts!  As most of you know Steve has yet to receive any disability as he was on a 6 month waiting period (still can't figure out why, and have exhausted all resources to try to fight it), but I also am in the transition of beginning a new job & trying to establish a strong client base to have a good cash flow coming in.  The energy that y'all have spent & donations mean so much! Thank you thank you!

Steve & I still receive emails/messages daily & for those thank you!  Life sometimes has a way of beating you up making you feel like you aren't doing enough & your daily reminders & uplifting words are so appreciated & keep me going!  <3

So Steve & I recently took a camping trip to Live Oak Florida for the Wanee Music Festival! Steve has mentioned wanting to go to a festival and after research (Thank you DANNY) this one was the most "wheelchair" friendly.  It was an amazing experience.  We met some of the coolest hippies around.  These people have such an amazing mentality that Steve & I quickly learned to love & begin to adapt in our life.  The more & more I write about this the more it is beaten into my head--Less IS More--Also, they take responsibility for keeping the Earth clean & beautiful.  It was an amazing thing to see such a clean festival & everyone contribute to cleaning up after themselves.  Everyone recycling & taking the extra effort to maintain the beauty that is left on Earth.  It really inspired me to make sure I'm truly doing my part.  It's easy to take the extra effort & I'm appreciative of the reminder of the importance!!  Also, I must pat myself on the back for completely pulling everything together from packing up the car, setting up camp, grilling out, etc... I haven't been completely citified after all! ;) 

 OK well my quick break from seeing Clients is over---figured if I didn't squeeze this in now, I would get consumed with paperwork & hanging out with Steve this evening that I wouldn't blog.

Quick side note---special thanks again for all those that constantly check on Steve during the week.  Like I've said some days are worse than others but the constant support from all those who love him while I'm working helps a lot!  I hate leaving him home alone during the day so not only does it help keep him company when y'all visit for lunch---but also eases my mind!  Much love as always!! <3

Coco Plum Island

So I posted photos on facebook & videos & then took a week to adjust back to real life (was harder than any other vacation ever) & am excited to blog about the experience!! 

I must say from the second we stepped on the plane I was working on relaxing.  I haven't been able to relax since hmm I don't know August.  We had a 3(ish) hour flight on a big normal plane & then landed in Belize City which was such a small airport (the smallest I had seen at that point) & immediately someone is there to help Steve & I get to our next flight.  Everyone was so polite & it was the easiest process ever!  So we get to our gate for Maya Air & realize that we are about to get on a small plane.  I was freaking a little but then realized we were about to get on a 4 seater!  I mean are you kidding me! At first Steve is so calm about it & I'm freaking out, but as we get going I feel at ease & start enjoying the view then I look at Steve & he's FREAKING...I immediately start taking care of him & remind him God has us in his arms & tell him to look out his window to see some of the best views I have ever seen!

As we land in Dangriga I realize this is actually the smallest airport I have EVER seen.  This place is tiny (explains the tiny planes)  We have a cab driver ready to pick us up & he begins to tell the history of Belize & Dangriga.  We drive about 20 minutes & get to really see the town Dangriga.  Which was cool since a lot of our friends we met on the Island are from there.  We then get greeted by our Captain, Captain Rojo.  Rojo might just be the kindest most helpful laid back amazing human being ever.  After he saw Steve was having difficulties walking, he swooped & picked Steve up & put him in the boat with no hesitation.  We then had a 20 minute boat ride to paradise.  In this photo with Rojo he gave me that necklace he is wearing because he said we touched his heart so much! <3

As soon as we get on the Island we get greeted with Food & Drinks & meet our other buddy Sergio.  The whole trip Sergio & Rojo would go above & beyond to help Steve & I out & help us relax & have a good time.  After we eat they helped Steve & I to our room (which they would always do..."Mrs. Hope let me help you!"  Steve napped & I went straight to the sun!!  Let it be known we pushed Steve around in the wheelchair & it was amazing how easy it was to get him around.  If there were steps he would get out (with everyone always there to help) and we would bring the chair up & he could get around easy!

The first 2 days Steve & I really enjoyed the relaxation privacy that Coco Plum has to offer.  You can be secluded even with 10 other couples & about 15 employees. We lay out, lay in the amazing hammocks (which we now HAVE to get one it's an amazing therapeutic thing to lay in a hammock), walked Steve into the Ocean, & just truly soaked in how amazingly beautiful this place is.  We immediately get along with everyone, staff & guests are all just very laid back, genuine, & kind people.  After breakfast the second day Sergio asked if he could help us push Steve around so we could tour the Island.  This was such a sweet gesture & it meant so much to us.  We got to see all of the amazing Island & we were really starting to pick up on the kind of people we were amongst. :)

That night we decided to go to the Tiki bar to mingle with the other guests.  I have to say that Coco Plum offers the best of both worlds: a completely peaceful private Island where you can relax & have lots of time alone with your honey AND a super fun beyond your expectation party with some of the coolest people you will ever meet!  Steve & I were in LOVE at this point even with the sun burns.  Yes I rushed the sun on us.  Steve loved telling everyone, "She kept saying let's lay out let's lay out..."

Now let me mention the food.  We would have breakfast at 7 AM (they were also super flexible & wouldn't give us any grief for being late.  Sam would always come knock at our door & help us get to breakfast :)) Lunch was at 12 & then dinner was at 7.  I swear not eating any other meat than seafood worked to my advantage.  They would catch their fish each day & it was the BEST seafood I have ever tasted.  All the food was always so fresh, perfectly cooked, & seasoned!  We had Renae & Sam take care of us each meal & they were very accommodating for Steve & anything he needed.  Heck we were hungover one morning & Sam came & set us up breakfast on our front porch of the cabana!! :)

The days all start to blend together because we fill them with so much...breakfast, lay out by the bar on the deck with some of our new friends :), drink lots of yummy drinks, hang out with sergio, nap, swim, lunch, drink some more, hang out some more, and then dinner & drinks & dancing dancing & more dancing :). 

Rojo took us on a special snorkel trip so Steve & I could go, we invited along another couple Dave & Janet, as Dave didn't feel comfortable to swim in the open ocean.  We parked on the beach of Pelican Island.  Rojo took me out while Steve chilled on the beach, & Crispen took Dave & Janet.  Rojo & I swam out & checked out some of the reef & then turned around early to go hang out with Steve.  We took Steve out & he went swimming & stretched around!  Rojo, Steve, & I hung out in the water just soaking in the amazing feeling for close to an hour.  We then took the boat over to bird Island.  I've been checking bird Island out since we arrived & it was so cool to go up close.  Frigates & yellow footed boobies live on the Island & hang out on the Black Mongrel trees.  They chose this particular Island because it's the highest elevation.  Pretty cool to see up close. 

Another very special memory was the night Sergio surprised Steve.  He Kristen & Steve (another amazing couple we met) went to check out one of the close Islands & came back with Belekin (local beer) stout.  First of all the local beer (Belekin & lighthouse) & local rum were so good!  So anyways Sergio & Steve had a convo about Steve liking stout beer so he got him some!  It was a really sweet & thoughtful surprise!

The more you started bonding with the guests it was sad when it was their last night on the Island!  We all shared so many laughs & good times.  I've heard of people going on vacations & meeting people they wanted to stay in touch with, but this is the first I've truly experienced that I wanted to stay in touch with all of these amazing people!!  From Jan & Troy who we plan to visit in TN, to Steve & Kristen, Heidi & Dave, Tara & Michael, Janet & Dave, Carolina & Dave..... 

Also one of the coolest things to see was the Island Staff in their element playing "intense" Island Volleyball.  It was so much fun to watch & Steve & I said that moment we felt like we were watching a combination of Eat Pray Love & Wanderlust.  The game was super intense until Ervin (our other bartender) got hurt, so it was back to the bar. 

One day Steve & I had the whole Island to ourselves for a few hours (minus the workers).  All the other guests had gone on tours, snorkeling, fishing, etc...It was romantic & peaceful! We spent the whole afternoon at the end of the dock...perfect!

I think my favorite night was the night after we had taken Steve out into the ocean for so long--he FELT great & was up walking around & EVEN dancing!! :) He wasn't as tired as usual with walking around & felt comfortable enough to get up for about an hour total.  Playing bartender & dancing.  It was such a special & sweet moment & when we danced & my eyes were full of joyful tears I looked around & everyone else was tearing up too!  Such a touching moment for everyone to share in a joyful moment & it hit me!  That's what life is all about.  Enjoying those moments & being surrounded by good genuine people who are going to join in on the excitement with you!  <3

I could write forever about how amazing everything was. Gorgeous views, amazing caring kind hearted hard working staff, peace, relaxation, & lots and lots of fun, laughter, good genuine people, getting out of routine (dancing on bars & allowing everyone to help me with Steve), amazing food, yummy yummy drinks, & memories that will last me a lifetime!

I want to let everyone know that helped make this possible it changed my life.  (Steve's also, but I don't like speaking for him ;)) Not only am I so touched that people would put together the energy & money to send us on this amazing trip (those that contributed thank you from the bottom of my heart I couldn't thank you enough).  I also, feel re-energized---like I can take on the heavy things that life has to offer.  I feel so blessed to have been able to see such a place & blessed to have met some seriously amazing people.  I have gained new perspective on life.  I love the laid back Island mentality of Have LESS & do MORE!  Steve & I have totally adopted that way of thinking.  We aren't given a lot of days to spend together & this trip reminded me that the trivial petty things in life aren't even worth energy, we don't want to waste a single moment of that on negativity.  I am going to soak up & enjoy every second I am blessed with my husbands presence & will only surround myself with those who will fulfill my soul & life not take away from it.  Life is a beautiful gift & I feel like the luckiest girl in the world to be surrounded with so much love & to know who my genuine & true friends are.  The support I receive daily is beyond measure & I can't even say thank you enough!

Still thinking....

I know I sound like a broken record...but I feel that it is something I need to continue to write about because I still see the pattern of people focusing on the negative in their lives, and missing out on so much positive.  Trust me, I of all people know and understand that everyone has bad days.  Trust me I know bad things are happening all around us daily. 

HOWEVER, if we would stop focusing on all this madness & appreciate the positive around us our worlds could be so different.  Let me give you an example: Yesterday I had a crummy day all around.  Things kept happening one after another that was leading to a worse and worse day but I still had a ton to be thankful for.  I have so many amazing uplifting people in my life that I can go to at any moment and know they are there for me.  Even though, I just wanted yesterday to be over I STILL knew I had so much to be thankful for, and didn't allow myself to get sucked into the everything sucks kind of mood. 

 

 I am begging EVERYONE that reads this to please please try focus on the positive in your life each day.  Even if it's just being thankful for another day alive, PLEASE try it & notice how much better the quality of your life becomes. 

Also, to everyone who has been signing up & helping out with visiting Steve & bringing him food---a HUGE thank you!  It's so helpful to not only him to keep his spirits raised, but also helps me feel more at ease knowing he has someone there with him each day.  Thank you thank you, I am so grateful for y'all!!!

Lots of love! <3