Wednesday, May 30, 2012

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

Monday, May 21, 2012

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

Sunday, May 20, 2012

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!

Monday, May 14, 2012

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