Thursday, February 14, 2013

Scared to go to sleep.

Wanted to write a few updates & also a therapy blog. May be a little on the heavy side---but it's needed.

For those that follow us know that Steve's feeding tube had gotten infected.  I noticed it a few days after writing the initial blog that there was a lot of seeping & it had an odor, I knew right away that wasn't normal.  Steve also the day before the odor began had gotten very sick & still wasn't able to eat and had very little energy.  All added up to a phone call to our surgeon. After a trip to the doctor on Monday they said he has a local low grade infection and they started him on antibiotics & we had to wait another 48 hours to use the feeding tube.  Because of these complications Steve has gotten very skinny & weak, so now first day using the tube again as the infection is getting better we need to strengthen him back up.  This process has def been a difficult one and we appreciate everyones love & support through it.

We are also very saddened to hear that a dear friend of ours Dan Soyka who was also battling ALS had passed away in his sleep last night.  We became friends with Dan & his amazing wife Lisa after we found out we had such similar stories---young newly weds facing just being diagnosed with ALS.  We have gone to visit them in Florida & really enjoyed spending time with them.  It's amazing how quickly you can bond with someone when you have so much in common.  Dan was too young to die.  This disease is ruthless & needs stopped.  I can't believe that the FDA still drags their feet about ALS, I can't believe that as a society we haven't funded & supported the disease enough to find at least a treatment.  There is no harsher disease in the world, and that's a fact.  So why aren't we paying more attention.  My heart aches for Lisa & Dan's family & I want to be in Florida with them all to hug them.  It's such a tragedy. You can send warm wishes to them here & please remember them all in your prayers.

So here I am Steve is asleep & I'm scared to sleep.  I have explained to people before my fear of going to sleep with him sometimes as when a mother has a new born & they want to watch them through the night to assure they are breathing.  Well, I find myself doing this with Steve often & even more so tonight.  I'm sad at the idea of what ALS is capable of & sad that so many amazing people have had to suffer with this disease & sad for all the people who have had to watch their loved ones suffer with such a horrific disease.  I pray & do yoga & meditate to help me with the fear because I know it's not healthy, but some nights are harder than others.  It wouldn't be fair if I only shared the positives with everyone because I want to help make everyone aware of how harsh ALS is so that maybe just maybe the right person will see this & be the person to find a cure/treatment.

So as far as Steve he is finally getting his appetite back some, we used the tube today with some success, & he is SLOWLY gaining strength.  We are celebrating every single improvement because with ALS you just never know if once something gets so weak if it will improve.  So every small improvement is so important.  True meaning of celebrating the small things.

I do want to add some positives.  A special thank you to some very special people.

First a general one to every one who texts/messages/calls to check on Steve.  Your concern means the world to us.  Thank you for caring for us, supporting us, & all the prayers & warm wishes.

Thank you to everyone who has donated or helped us financially.  Financial burden is inevitable with ALS so thank you to everyone who helps ease the burden some.

Special thanks to our dear friends Raymond & Erica for taking time while visiting with their families to come & visit us & bring us cheer.  They are celebrating their 10 year anniversary & because Steve is too weak for us to go to their party they came to visit us.  Very thoughtful & means the world to us.  They are like our family & we are very grateful for them!
Because of Steve's condition we didn't have any plans for Valentine's day which we celebrate love everyday but it's always nice to celebrate the day (side note despite Steve's rough 2 weeks he got me flowers delivered.  So thoughtful & sweet that he put forth the energy since he has so little right now to do something extra to make me smile:)).  Because of that our friends Danny & Jen came & cooked us a yummy Valentine's dinner.  Again so thoughtful & we are so blessed to be surrounded by such love.
Again another thank you to my in laws for bringing me supplies & helping with Steve as I need.  Very very appreciative to have them close by & that they haven't gotten annoyed with all the errands I've made them run! 

Also another good note---because of how rough the past 2 weeks have been my Mom is coming to visit us....She will be arriving Monday.  Sometimes all a girl needs is her momma.  I know having her here for a few days will help refuel me & I am very grateful for such a supportive & caring mom.

Again thank you to everyone who cares & supports us & helps us spread awareness about this awful disease.  If you think of it please share with someone about the disease, donate to an ALS organization or a pALS (person with ALS), or reach out to someone you know that has the disease to send them a warm thought.  Please continue the movement & I pray it makes a difference.

Thank you for letting me write when I have a heavy heart.  Sending everyone lots of love & remember to tell everyone important to you that you love them.  You never know when it will be the last time you see/talk to them. Make sure they know how you feel.  


  1. Oh Hope, I'm so sorry for your loss. I'm glad you are able to write about everything you're feeling here, though. It's so important to have an outlet.

    I'm also very sorry to hear about Steve's infection. I'm absolutely keeping you two in my thoughts.

    Just a side note - I think you mentioned using coconut oil before, so I'm sure you know this, but it's full of good fats AND it naturally fights bacteria and infections. I'm not sure how easily Steve is drinking, but you can warm it up and mix it with anything drinkable.

    Lots of love!!

  2. Thank you for your kind words for "Our Friend Dan" and in style with her class, Lisa now asks everyone to turn our attention to you. I am linking this on the comments of a tribute to Dan I am uploading now at ... should be on line shortly.

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  4. Dear Steve and Hope!

    I just watched Say yes to the dress' which aired last week here in the Netherlands.
    What à breathtaking bride and groom!!
    I was so moved by your story that I googled your names to find out how
    you are doing. I'm very sorry to read about your medical struggle!

    We recently lost the mother of a close friend to this horrible dissease ALS.
    After the diagnose she fought it for 8 months.

    Over the last year the awareness about ALS is slowly spreading in our country.
    Also due to a controversial campagne. On billboards are, besides numbers for
    information and donations, beautiful pictures of various people who had ALS, with
    the line: "I'm now deceased".

    Hopefully everyone will soon realize what an incredible gift, a cure would be for so
    many people and their loved ones.

    I wish you all the strength, support and love for the future!

    Mariska xxx

  5. I saw your story on Say Yes to the Dress and I was so very touched. ALS is close to my heart as my Aunt passed away from it about 16 years ago and to this day she is the person I miss most and I hate that she missed meeting my children and her own grandchildren. I watched her go from someone with a wrist that hurt to spending the last Christmas with her where she could barely communicate using a keyboard device and all food was via tubes. She passed away a few days after Christmas 1996 and on the day of her funeral my husband proposed...I think hoping to heal a broken heart. I am so impressed with your perseverance and love for him and all those things that go along with taking care of someone with ALS. I will pray for you two and your family.

  6. I found your blog through KariBeth. My Dad had ALS- such a horrific disease. I will certainly keep you in my thoughts and prayers.

  7. Thank you all for your kind words. They mean more than I could ever explain.

  8. Hope and Steve,
    Despite your extremely challenging lives you are giving us all many gifts. I know no one with ALS, but your story has moved me to take greater care of those around me. Thank you could never be enough for the courage and love you two share with the world. Namaste'