There is a lot of life being lived by the Geylings these days.  Max has a full week of finals, music juries, auditions for next year and packing during this last week on campus before summer break, Wilson finished up all his coursework and is reveling in all the senior fun to be had these last couple of days before his graduation and Olivia is play-off bound!  We’re hoping the girls advance on Thursday so the boys can come to the semi-finals next Tuesday :).  Olivia was given a special honor by the SB Athletic Round Table yesterday voting her as the female athlete of the week.

Again, her success is a reflection of her amazing team as a whole and we look forward to cheering on the DP Lady Laxers in the first play-off round at DP this Thursday, 6pm.

Wilson has had a full calendar of events including the Veterans’ Graduation Banquet and annual military ball…

Veterans’ Graduation Ceremony Comments

…and playing with kids on campus!  Ha, Ha

Awww, that warms my heart!

As for me and Rolf, we sit back and gleefully observe all the goings on.  Rolf works doubly hard to make sure I’m able to participate as I’m physically able and I’m forever grateful.  The weakness in my arms and trunk is growing as is my dependency on others.  😦   A trip to the pulmonologist last week revealed my need for some breathing support.  I’ll wait to share more once I receive the machine and am trained on how to use it.  It’s a disappointing development but there is far too much fun happening to be too melancholy about it.  We’ve got to strike while the iron is hot and embrace all there is to celebrate right now…so much to celebrate!

That’s right folks!  Yesterday’s game against Thatcher went into QUADRUPLE OVERTIME!!  It was another heart-stopping, nail-biting game…Thatcher started the game strong scoring two goals right off the bat.  DP fought back to tie it 2-2 and then the two engaged in a back and forth battle with DP pulling ahead at the end of the second half.  Thatcher got a shot on goal with 2.6 SECONDS left on the clock to tie it up 5-5 sending the game into  4 overtimes until Brooke Essig’s sudden death, game winning goal!  (PC Greg Lawler)

One thing that amazes me is the girls’ ability to keep their cool in tough games like this one…not something I seem to be able to do and I’m just sitting there!!!  😉  Well done League Champs!

It’s time for another disclaimer.  The weakness in my arms and hands is making it harder to write and type and so I’m falling behind in my correspondence.  Rather than fret over it, let me say I read everything whether it be a card or comment or email or text or IM and I appreciate EVERY communication that comes my way.  So please, keep ’em coming and know that if my responses are delayed or curt or whittled down to an expressive emoji, it isn’t due to a lack of interest or gratitude…simply a matter of mechanics.  😉

It’s getting hard friends.  The growing number of limitations and the practical implications can be crazy-making.  After a super fun day with my dear friend from high school Annie & her daughter Sara visiting from Indianapolis and a fun win for the DP lady laxers, I had an unsettling choking incident at dinner on Tuesday night which wore me out and led to difficult transfers once we got home and a fitful night’s rest.  I admit the sequence of events left me feeling defeated & desperate.  Then, Rolf & I went to my neurology check-in the following day and we crossed paths with another patient farther along in the journey.  I looked at Rolf and cried tears of gratitude for where I am and panic about where I’m headed all at the same time.  Up, down, up, down…the roller coaster is real and it’s a constant challenge to live in the moment and not lose sight of all the goodness in my life…so much that is good!!!  Lessons in perspective regarding the physical, emotional and spiritual experience in this journey are reiterated over and over…with increasing depth and meaning as time goes on.

Shortly after my diagnosis a year and a half ago, I mentioned how I felt God was telling me that my ALS journey was going to be just as much (if not more) a spiritual one as a physical one.  How very true that is turning out to be.  Ironically, it is taking me being stripped of everything…systematically…little by little to show me how integrated AND how uniquely separate my spiritual journey is to/from my physical existence.  ‘Sounds kind of mystical and I’m sorry about that because I don’t want to lose you.  I think what I’m trying to say is my faith experience isn’t about “being spiritual” but rather recognizing that I am spiritual, aligning myself with what God is doing all around me and choosing to spend as much time on my spiritual needs as I do on my physical needs…making the day to day not only purposeful but full of life…especially now.  As a Christian, I believe that God put this all in motion, Christ reconciled me to God in relationship and the Holy Spirit exists to empower and guide.  I have such a greater appreciation for the triune as time goes on…a multi-layered expression of love in a multi-layered life experience…especially now.

…is a helpful life hack at times.  Not that I condone being “fake” in general but there are times when it is helpful to buckle down and imitate confidence until our imitation begins to generate the real deal.  😉  On some levels, I think I’ve been living out this mantra for the past couple of years…especially in the months leading up to my ALS diagnosis when I knew something was “off” but figured it would most certainly get better in time so I kind of “faked” it (or at best “downplayed” it) waiting for the upswing.  Even since my diagnosis, I’ve been able to downplay the debilitating aspects of this disease in public and confidently interact with others regardless of how I was feeling on the inside.  I am, however, crossing that threshold…I can no longer “fake” it.  No matter how hard I try to keep functioning, there is a point in the day when my body just won’t move anymore.  No matter how deep I dig to will myself to keep my mouth moving in a conversation, there comes that moment when my mouth can no longer form the words.  My body has a mind of it’s own.  It’s surreal and I feel like I’m living a scene out of the 50s cult classic “Invasion of the Body Snatchers” but it IS happening.

This has been made clear to me the past couple of weeks as we’ve had a full calendar of events requiring me to interact with lots of groups of people.  “Being present” isn’t something I want to stop doing but I do feel like I need to start wearing a disclaimer around my neck…

“I may not be able to converse like I used to or express all that I’d like to say to you, I may even stop talking mid-sentence, but I’m here…I’m taking you in…I love that we’re sharing this moment…when you give me a hug, I’m hugging you back…when you tell me ‘I love you’, I’m loving you too.”  

I have a voice generating device that will help me communicate needs and wants as time goes on but I’m not quite sure yet how effective it will be, especially in group settings.  We’ll see.  The point is my days of  “faking it” are long gone and the “hospital gown” that is my life is not only untied at this point but flapping wide open with each gust of wind that seems to expose a new reality in this disease’s progression.  Part of me wants to insulate myself and not confront the humiliation of uncontrolled bodily function but thankfully there’s a bigger part of me that could care less…so I’ll be out and about as long as I possibly can, flapping gown and all, you’ve been warned.  😉

Here are just some of my recent outings:

Although I haven’t felt the need for a hired care giver yet, I have grown increasingly dependent on Rolf and Olivia and I am beyond blessed by their innate ability to (seemingly) effortlessly care for me…especially Olivia.  I ask her to do things for me that no 16 year old should have to do but I ask her because she is more than capable and because I genuinely prefer the way she does things…i.e. she puts my hair up in the best high ponies or french braids and there is an awful lot of hugging and high-fiving that goes on during transfers on and off the toilet.  There is no fuss or drama with this girl and I couldn’t be more proud of her many exceptional qualities!  Her options for the future seem endless to me.  So proud of you little girl!!

As always, I sure do appreciate your prayers…I feel guilty that our friendship is so focused on me and my needs at this point but know my mind is flooded with thoughts of hundreds of people every day and I do pray as I feel led but if you want to send me specific prayer needs, I’ll do my best  to add them to the list. 😉

Love and more love!

Just a couple of hours after I posted my last blog post, I got some sweet encouragement in the form of an email from “Tommy Walker Ministries” highlighting a new song written by Tommy’s daughter, Emmie…a friend since 2001 when our families attended the same church in Los Angeles.  I had to dig pretty deep in the Rudy’s Beat archive to find this picture of Rudy with a much younger Emmie in 2009.  😉

Ahhh, and here’s another gem from around 2006…  🙂

I was blessed by Emmie’s song and sent her a text the following day to tell her so…here’s our exchange:

Yay!  She’s such a sweetheart!  Take a listen…I just know you’ll be blessed by it too:

Click Here

I’m grateful for the circle of creative and thoughtful young people in my life who continually remind me whether through music or art or written word that God is present in all things and actively pursuing me ALL my days…PERIOD!  Hallelujah!