I wanted to write some quick thoughts down while I had a few free minutes (Don't get many of those these days & it's hard being the only caregiver sometimes---however I wouldn't give up spending each moment with Steve any day)
For starters I want to say that watching Steve deteriorate has never been easy, obviously, but I have always found a way to focus on the positive remaining and the things ALS hasn't robbed from him. Seeing that the progression is this far along lately the list of things it has taken from him is longer than what is left. With that being said this is the perfect time for us to give up, throw in the flag and be defeated, but that's just not Steve & my style & like Steve Gleason says, "No white flags." So I wanted to write that while we are facing this harsh reality of now having more bad days than good we still find a way to find good in every single day; in fact we try to find multiple good moments in every day. It's not always easy some days it seems impossible to focus on the silver lining but if there is anything this has taught us---sitting & feeling sorry for ourselves, complaining, or being defeated doesn't make things better. To put it simply if you seek out something positive more positive happens.
Here's Steve once a thriving successful 20 something now a 30 year old stuck with his wife doing just about everything for him. Spending 2 of the last 3 months in the hospital is not something that was planned, having to cancel travel plans wasn't planned, neither was having Steve lose his voice and ability to eat, his ability to go to the bathroom without assistance, his ability to sleep peacefully at night without worrying his breathing is going to stop, the ability to hold his phone, the ability to sit up for certain periods at a time, the ability to hug his loved ones, or pet his dogs. None of that was planned however despite each new things ALS threw at us we somehow learned to accept that as our new reality and move forward. As the list continued to get more things he can't do vs. things he can we had to learn to continue that process. Steve may have his body being taken away from him but truly his spirit has remained the same. Of course like every human he has his moments of sadness & anger but his ability to overcome these is incredible. I also, have my complete melt down moments but am reminded that if he can pull himself together so can I. Some days I am just thankful to have another day with Steve & that alone is enough to the give me the strength & the happy to get through my day.
I hope that along with living life to the fullest, not taking a minute for granted, & loving one another; people can learn to use that: no matter how bad a day you have you can dig deep to find something to be grateful for each day. Something to keep you going and something to keep you positive.
We had another unexpected trip to the ER last night which although I was a bit worked up about I was ultimately glad we went to get Steve the help and that he wasn't admitted. Whew. Few things most people don't think about is that with ALS comes a lot of other "medical problems"; infections being one huge one of those. When your body is fighting against itself it opens itself to all those bugs that want to attack & the weaker you get the more infections come. Steve has handled all of these with such class & this one is no different. Steve has battled frequent urinary infections since almost the beginning of his diagnosis & sometimes he gets an unexplained blockage & infection that will end him up in the ER. This one however has been the worst I've seen and they sent him home with a home catheter and instructions to follow up with his urologist. As with everything Steve is taking this in and learning to accept it as reality to continue to move forward.
While we are facing the harsh reality of ALS and all the things that come with it we are choosing every day to face the reality with optimism.
Just a few updates, things to share, & upcoming things:
-->Before Steve ended up back in the hospital July 12th Steve & I were enjoying some time in Charleston/Folly Beach :) Wanted to share a few photos of our time we did get before ending up in there ER & driving through the night all night to make it back to our trusty Emory Johns Creek. We spent another 2.5 weeks there so it was worth the stressful drive to get back to a hospital we trust where we are surrounded by everyone who loves & supports us at home.
-->With all the infections, some extremely bad stomach reactions to antibiotics, & simply having ALS Steve has lost way too much weight. I am currently working my butt off to get weight put back on him and make my own shakes for him daily that include such a large amount of calories & protein & healthy stuff---however any all all recommendations of course are always welcome. We are always willing to try anything. Steve's body "rejects" all formula foods so I have to use all "real" food. With the vitamix & lots of patience I am able to get pretty much anything the right consistency to use in the pump (recently unable to "handle" bouless feeds as well).
-->With that our dear friend Raymond Adams, who has taken so many beautiful photos for us, took on a heavy truth project of showing what ALS is doing to Steve's body. These photos are a true amazing way to see the reality of ALS, they make me cry each time I look at them, but it's so important to show what ALS is doing to Steve's body---makes it even more incredible that he still has such a strong fight & loving spirit left. :)
--> Steve, myself, & our friend Jeremy Brown from Love is Art have been working on some projects together to help promote ALS awareness, Steve's drive for life & our love for art. His art gallery is coming up , August 24, which is going to be amazing & it is our goal to be there for it!
--->One last random note :) Since I constantly "preach" ;) about living life to the fullest I have decided to fulfill a random bucket list item of something I've always wanted to do but never allowed myself to do it. I'm allowing my hair to dread. :) Yes. you read that correctly. If I don't practice what I preach what kind of teacher am I really? :) So I am fulfilling a life long "I've always wanted to do that." For multiple reasons; because I can, to prove to others that it's ok to take a risk in life no matter what others think even in silly things, & do do those things you've always wanted to. :)
An extra thank you to everyone who has helped with yet another transition back home. Our time out of the house these days is truly limited until Steve gets some strength built back so to all my errand runners & everyone who brings me treats---thank you. To all the new donations also, thank you---the new medicine & equipment added of course comes with the added cost, so thank you all for the help!
Lots of love always. <3