Tuesday, November 12, 2013

Purpose

      I'm writing this as I watch yet another amazing soul massage Steve.  We've been blessed with our friend Karyn volunteering to come massage Steve as often as she can & now a dear woman named Michele is here to volunteer some of her services.  For those who don't fully understand ALS, the pain that is involved with your muscles deteriorating is sometimes unbearable.  Add the muscle spasms and lack of mobility and you have the recipe for misery.  While I try to stay on top of range of motion (stretching) & some massage; some days I just can't squeeze it all in.   While watching these incredible people work with Steve, it has become obvious this is their purpose.  They are so good with light touch & just the right amount of pressure to relax Steve.  I've been able to learn so many valuable skills from them & have felt more inspired to continue the pursuit of my purpose.

      It probably sounds weird that I'm almost 30 and talking about pursuit of purpose, but I believe some people's purpose changes constantly through life.  Currently my purpose is to be here for Steve as his caregiver & his wife.  The reason I know this is my purpose is that it makes me happy to be able to care for him & my desire to constantly want to learn more about how to help him.  So many people have suggested that I pursue nursing because of all the medical experience & knowledge I have gained while caring for Steve; however I don't believe it's my purpose to be a nurse for others; but honestly I'm so in the moment with Steve I don't know what my future purpose is. (Side note: I feel it's important to share that Steve has often wanted to have lengthy conversations with me about how I will be without him.  While some may find this morbid for those who know Steve, he has worried about me from the day we found out & this is his way to help him feel like he is helping me through the difficult situation.  He and I have talked at length and he has often said, "while you are trying to figure it out I'll be there with you sending signs."  It's an amazing experience to have such an honest conversation with your husband.  It's an amazing connection we are able to share & I appreciate his willingness to openly discuss this with me.)

     I know a lot of people often say that Steve is so lucky to have me, I'm not denying that, but most people don't think about how lucky I am to have Steve.  I don't just mean in that I have him as my best friend or the love I receive from him, but he taught me that what I was doing before isn't my purpose for my life.  He opened my eyes to truly enjoying all aspects of my life (even if it is cleaning up vomit).  I'm not saying care giving is always easy but at the end of the day I can go to bed knowing I did the best I could that day, that I truly made a difference, & a sense of satisfaction I never had while doing therapy.  

    I feel so blessed to have learned a new outlook on life and to be able to continue to learn new things about myself.  I am constantly growing and learning and proving to myself that I am capable of doing anything I put my mind to.  I have a history of struggling to believe in myself that thanks to so many incredible people coming into my life at the right time, I've been able to continually work on improvement in that area.  

   I also have noticed a shift in Steve himself.  When he first had to stop working due to ALS, he struggled with what would be his purpose.  During that time not only was he adjusting to an awful diagnosis but he felt like he would never have a purpose again.  It was amazing to see him decide to find a purpose and to put so much energy, even in his sickest moments, to continue to pursue his purpose; which is to spread awareness for ALS, living life, & loving.  The day we decided to begin filming our documentary Steve began handling life with ALS with a beautiful grace that I can only wish to have half of in my life.  

   I sometimes have so many thoughts that I feel like my writing is unclear and scattered.  I'm not always the best with grammar and proper punctuation but I still feel so driven to write and share my thoughts.  It's that pull of energy to pursue certain things that helps me feel at ease about always finding my purpose.

Speaking of lots of thoughts at once I have several updates since my last blog. 

After spending most of August and beginning of September in the hospital we were able to spend close to a month home until September 25th Steve had some respiratory distress and had to be taken to our trusty hospital Emory Johns Creek by ambulance.  Gave me a big scare  but it was a known he was going to the hospital the next day due to the infections still being detected in the sputum earlier that week that we weren't totally surprised.  So we spent a full month with our family (the ICU staff & respiratory teams at Emory Johns Creek really are now considered friends/family) & have been home now for 3 weeks.  While in the hospital we got Steve's feeding tube switched from a G(food goes into stomach) to a G/J (where food can go into stomach or directly into intestines) that way we could begin to give him tube feeds again & attempt to ween from the TPN (IV food) some so his liver would get a break.  We also worked on mobility as due to stiffness, lack of use, & some injuries became a problem.  We have a physical therapist at home who has made AMAZING progress with Steve & his mobility.  :)  The infectious disease doctor put Steve on a very strong antibiotic regimen, that they use as a last resort which successfully kicked the MRSA & made the pseudomonas "light growth". Just a quick recap Steve has had pseudomonas & MRSA in his lungs for close to 4 months.  He is still on these antibiotics & the pseudomonas is still growing lightly but MRSA hasn't come back, so that's progress.  After handling Steves trahe care since May I can say that his secretions have become much more manageable & I can see progress.  

Since being home we've been working on getting Steve back in his wheel chair so he can get back to painting & we can get out & about again.  He's incredible and has made huge strides and improves daily.  

For those interested in Steve's paintings the website is up.  www.driveforacure.com go check it out & stay tuned for shirts & greeting cards :)

On Friday (November 8th) we got out of the house & went to the Michael Franti & Spearhead show at the tabernacle.  It was so uplifting to get to see Michael & Sara again & get to attend the concert.  He brought us out on stage for our song Life is better with you  Steve stayed in his chair for 6 hours total and did amazing.  Half way dancing on stage it hit Steve that he had pushed it a little and he said he felt sick.  We got off stage I gave Steve some meds, suctioned him, & hugged Sara & Michael goodbye mid song & we left a little early.  It was amazing how accommodating everyone was to us & made us feel so special.  Steve said he could feel the love from Michael, Sara, the people back stage pre show, & the audience----& it made him feel amazing.  It's a surreal feeling to know so many people care about us & love us.  Michael & Sara are amazing to allow others to experience that same feeling through Do it For the Love .  Another amazing thing from each time Michael invites us on stage creates amazing awareness.  The show was written up , here in the creative loafing. Check it out. My mom was in town for the weekend, which was amazing to have her there to experience all the love & to have her help. We also got to spend some time with our dear friends Karyn & Lisa & their family whom we have grown to love like they are our own family.  All in all another amazing experience that I will cherish for the rest of my life. Here's some photos from our fun night out with our favorites! :)  








I want to also thank everyone who has been coming to visit us.  We love company & each visit helps uplift us, so please keep them coming!! :)

I know it's been a while since I blogged and this is a lot to fit in one blog but wanted to send a quick something out to yall.
Love each of you lots & lots & lots. 

5 comments:

  1. Hope & Steve, I appreciate your taking the time to write these blogs to keep everyone up to date on your lives. Hope, just a note on your comment about writing: the fact that you trust us with your thoughts and feelings is amazing, and I would not worry one bit about how it comes out!!! You write from a pure heart. You're authentic and truthful. That is so valuable in this world! You & Steve are blessing so many people; and although none of us would wish this life for you, we are thankful that you choose to BE in the life given to you :-) I pray God's love, grace, mercy, peace and joy for you both. With love.........

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  2. I just saw your episode of "Say Yes to the Dress," & the clips from your wedding were beyond inspiring. In a world that has cheapened "love" to a catchphrase, you both radiated with a pure, unadulterated love. The mere snippets of your vows to each other had me in tears. I'm so happy that you found each other & celebrate every day you have together. Thank you for sharing your love story to the world. God bless you both

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  3. Hope! What a beautiful blog and what an inspiration you and Steve are. God makes beauty from ashes. Your stories are a testament to that. On a complete side note, I have read folks with ALS feeling better when eating a grain free/low carb or ketogenic diet. I'm not sure what the balance of carbs/protein/fat are being given to Steven but maybe a lower carb and higher fat and protein would help him feel better. Here is a really fascinating link: http://www.stemcellmd.org/conditions-treated/neurological-conditions/als-amyotrophic-lateral-sclerosis/

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  4. Dear Hope and Steve. I just watched Say Yes to the Dress on youtube and watched with tears in my eyes the whole time. I cannot even begin to understand the struggles you two have faced and are facing together. But your love for each other is both heartwarming and incredibly touching. I wish you peaceful days filled with love.
    All the best from Erika, Norway

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