Another Reality Check

I had my swallow test at the hospital yesterday.  It was one of those “to dos” that I wasn’t motivated to do.  I find the ongoing tests and evaluations in this journey distressing because I go into them knowing they’ll highlight the progression of the disease without offering a cure or real solution…and that’s just plain depressing.  As wonderful as my team of medical professionals is, the nature of the consults are bubble bursters in my ongoing effort to remain optimistic and see the glass as half full.  🙂

The information gathered from swallow tests specifically helps to determine when a feeding tube will be necessary.  Ugh!  When I was first diagnosed in September, I knew enough about ALS to know feeding tubes and breathing tubes are part of the ALS journey but, to be honest, my gut feeling about how I wanted to approach this disease at that time was to do it naturally…to let it take it’s course naturally…and not intervene.  Well, now I’m confused because when I envisioned having to decide whether or not I’d get a feeding tube, I pictured being bed ridden and having poor quality of life…why prolong that scenario?  That certainly isn’t the case now and the factors in deciding to get a feeding tube aren’t so black and white.  The decision to get a feeding tube is not just based on whether or not the mechanics work but also on the amount of effort it takes to eat.  Although I can still chew and swallow, it is taking me longer and longer to eat.  I really have to focus on chewing and swallowing and eventually the effort to do so will be too much.  I honestly didn’t think I’d be engaged in discussions about feeding tubes this early on in the process.  Some suggest getting the feeding tube sooner rather than later to get used to it before you’re dependent on it.  I’m not there yet.  I’m still not sure how I feel about it.  My speech pathologist said I’ll know when I’m ready and I’m counting on that.  Ongoing prayers for ALS to be completely lifted from me are greatly appreciated but, in the meantime, prayers for a supernatural ability to continue eating naturally and discernment in the process of the disease as a whole are coveted too.

As much as I hated to get the swallow test done yesterday, there were a couple of silver linings…

  1. My friend Bob was my xray tech during the test…

IMG_1683

 

2. And look how Rudy showed up!!!  My hummingbird earring was captured in the xray video…perfectly perched front and center keeping an eye on things.  🙂  I love that.  Hi Rudy!

My next reality check will be a lung function test with the pulmonologist next week but after that, we’ll get a break from any BIG discussions until my next appointment with the neurologist next month.  In the meantime, we’ll have some fun with Oma who arrives today for a weeklong visit.  Thank you for the Mother’s Day love and encouraging notes/comments/messages and thank you for persevering in prayer with us!!!!  How very grateful I am!!!

Identity Crisis

7b1a3663

The sounds of celebration continue to ring after the DP girls varsity lacrosse team won their first division championship in program history on Friday night in Los Angeles.  The girls are thrilled and we share in their excitement…what a fun achievement.

IMG_1659

7b1a4360
Olivia and her amazing coach!
7b1a4417
The Essig and Geyling crew…big brother fans ROCK!!!

IMG_1668

It was such a fun way to start the weekend…a weekend I anticipated would be difficult and complicated.  Of course, Mother’s Day is an opportunity to celebrate Rolf’s and my dear moms (Happy Mother’s Day with much love Oma and G’ma Jo!!!) but there is an undeniable dread to this year’s Mother’s Day for sure.

I spent some time this week googling topics like “Facing Mother’s Day after the loss of a child” and read a handful of articles and, honestly, none of the insights I read resonated with me.  For some grieving moms, Mother’s Day accentuates feelings of guilt over not being able to spare their sick child from death or fear that they’ll no longer feel like their child’s mom.  I’m not struggling with these concerns.  I think what is surprising to me in my grief journey is the fluidity of the experience.  The best way to explain it is the difference between having a “broken heart” versus a “breaking heart”.  My heart hasn’t reached a maximum level of heartbreak.  It is still breaking.  I am a mother of four children.  I gave birth to four babies and one of those babies no longer exists.  That’s a hard reality to grasp…no matter how much time passes.  It’s hard to face the day without Rudy…no matter how much time passes.  The grief is an open wound.

In addition, my whole identity as a mother has shifted and is dramatically changing as each day passes.  Last year, I was the mother of 4 children…able to care for their varied needs.  This year, I not only fall into the category of a bereaved mother but am also a terminally ill mother dependent on my children for daily basic needs.  Talk about a paradigm shift!  I don’t know.  Maybe Mother’s Day, for me, creates a bit of an identity crisis.  Maybe the pain lies in not being the kind of mom I’ve relished in for the past 21 years.  Maybe the pain lies in not having the capacity to be for my family what I’ve been before this point in time.  If my grief over losing a child is an open wound, my disease is salt in that wound.

So, how do I navigate Mother’s Day?  One breath at a time.  This year it is, for me,  a celebration of the four special days in my life when I became a mom.  It’s a celebration of the four lives God entrusted to me and Rolf.  It’s the grateful acknowledgment of the abundance of God’s grace that has blanketed our family…through so many changing seasons of our past and the changing seasons to come.  I guess what I’m learning this year is that the special holidays that pepper the calendar with significance and tradition won’t always be happy celebrations but are no less rich and meaningful.  Life experience whether joyful or tragic serves to deepen and shape us altering our approach to life but that’s not necessarily a bad thing…just, at times, profoundly different.

IMG_6224
Thank you God for the gift of Wilson!
IMG_6225
Thank you God for the gift of Max!
IMG_6226
Thank you God for the gift of Olivia!
IMG_6227
Thank you God for the gift of Rudy!

hope1

 

Championship Bound

The DP Lady Laxers did it again!  They pulled out a win in the semi-finals against Culver City and are heading to the championship game in Glendale THIS Friday!  It was a thrilling game made especially fun by a big group of friends who showed up to cheer the girls on.

I’ve been saying all season what a fun distraction Olivia’s lacrosse season has been this year and I’m grateful the fun will continue for a couple more days.  😉

7b1a2057

7b1a2420 2

7b1a2441

7b1a2442

7b1a2451

7b1a2877

7b1a2938

(Thank you Greg Lawler for all the great action shots!)

IMG_1595
Cheering section!
IMG_1597
Yay for big brothers and friends!!!

IMG_1624

The fun has certainly been multiplied x 2 with the boys home for summer!  Rolf pulled two long days of driving down south and back last weekend to pick up the boys and their stuff.  The MOHD Squad is so happy to have them both home for a few weeks.  Yay Summer (but not yet for Olivia)!IMG_1623

IMG_1589
Wilson heading off to his summer job with Rudy’s old lunchbox. 😉
IMG_1556
Another Greg Lawler masterpiece!

Desperation + God = Inspiration

We had our annual church meeting a few weeks ago and I was struck by a couple of things…1.) the fact that we saw the last “Annual Slide Show” with pictures of our Rudy in it (super sad!) and…2.) how much our community has been through this past year.  Our pastor made the observation that as a result of the heavy losses in our congregation this year and the lingering trauma in our community as a whole from the month-long Thomas fire and tragic mudslides this past winter, there is a sense of desperation and a greater depth in our congregation’s worship of and expressed need for God.  I would agree.  I feel it personally…there is a certain level of desperation that is drawing me into deeper spiritual awareness, for sure!

That got me thinking about “desperation” and “inspiration” and how the two can go hand in hand. I’m sure we could brainstorm all kinds of examples of amazing things desperate people have been inspired to do throughout history but it’s not really about the “end result” for me…it’s about the process.  It’s about the relationship between the two and how God is using my desperation to stir my soul, draw me to Himself and lead me to inspired action that, in turn, nourishes me…whether it’s time with loved ones, a legacy project, blog post, music or art, for example.  The problem is desperation is a strong emotion that can easily overwhelm and immobilize & parceling out and following through on inspiration is hard work…it’s just a whole lot easier to wallow in self pity and binge watch Netflix in ones super comfy adjustable bed!  So, my goal is to do the hard work, lean into the desperation just long enough to get to the deeper inspiration part and find joy in unpacking the treasure that follows.  🙂

In the meantime, this is going on too:  I tried Hyperbaric Oxygen Therapy (HBOT) last week.  A friend highly recommended it several weeks back and offered to pay for a few sessions so after some research, communication with my doctor and a call to the company who manufactures my implanted port,  I finally made it to my first session.  Based on what I’ve read, my expectation going into it is that the therapy could help boost my energy level.  There are other potential benefits but I’m not sure how realistic they are in my situation.  I liked it.  It was comfortable and relaxing.  The one challenge for me is getting in and out of the chamber.  I need to determine if the energy I might gain is worth the huge effort it’d require to make it happen.  We’ll see…I’ll keep you posted.

My leg brace arrived last week.  It’s taking some getting used to but I’m adjusting.  The good news is that I’m motivated to wear it because I can feel the support it gives me in my weakened ankle and knee AND it’s alleviating the tension in my hip quite a bit.  The bad news is I came home and emptied out my closet of shoes which was sad.  I like my shoes and I had some I was “saving” (for some stupid reason) and never got to wear!!!!  I was sad and overwhelmed by another big bag of “stuff” cluttering up my garage when Olivia got inspired to post some of my discarded shoes on her Poshmark account and made 4 sales in the first 24 hours…which ended up injecting some fun into the whole crazy reality!  Yay Olivia!!

IMG_1549

In other news:  DPHS Girls lacrosse made it to the playoffs and had their first play off win in program history last Wednesday.  They advance to the semi-finals THIS TUESDAY at DP so if you are local, come cheer on the Lady Chargers with us!

I just happened to capture one of Olivia’s goals on video during Wednesday’s game (#keepaneyeonnumbernine) which is fun to share and though we’re super happy for Olivia’s success this season, what makes this whole season so special is watching the team and coaching staff as a whole.  The girls are all strong players…the attackers, midfielders and defenders all play to their strengths and play well as a team…the coaches are competitive and positive and expect great things of the girls on AND off the field.  To see our girl thrive in this season of personal loss and uncertainty is a huge blessing and I’m grateful for God’s continued grace.

IMG_1530
Last week’s #9 cheering section! 😉

Rolf and I were forced to address some garage issues in preparation for the boys’ return from college this weekend and that meant passing on Rudy’s durable medical equipment.  😦  So, so happy to find homes for his walker and wheelchair where they’ll get good use but it’s still hard to let go of Rudy’s things…

IMG_1518
So grateful to my friends at the MTU for passing Rudy’s walker on to a family who expressed their need of a Rifton walker for home use just a day before I called them about Rudy’s!  
IMG_1543
Rudy’s wheelchair found it’s home with Joni & Friends and their “Wheels for the World” program. His chair will get refurbished and sent somewhere in the world to a child in need.

Olivia unearthed this little treasure from one of her social media accounts and it made us chuckle out loud…oh that boy!

I think I’ll just leave it at that for today.  🙂  Thank you dear ones for your ongoing prayers!

 

 

 

The Symptom of Procrastination

I think I’m going to add “procrastination” to the list of ALS symptoms I’m experiencing.  I’m not a procrastinator typically so my lack of motivation to act on things is surprising to me…I blame ALS.  😉

I got a prescription back in December for an orthotic to help with my drop-foot issue caused by the weakness in my left leg.  I procrastinated getting the prescription filled in large part because it required me to go to the same office I took Rudy for his custom foot braces.  Although there is some comfort in my familiarity with the medical/therapeutic community here in town, the thought of going to Nobbe Orthopedics was super sad and a little humiliating.  It’s still so surreal to me that I’m even on this journey and how, more so as times goes on, it overlaps with Rudy’s.  These are steps I don’t want to take…physically or figuratively.  Oh, and missing Rudy doesn’t seem to be getting easier either.

Well, yesterday I took the physical step forward to Nobbe’s to get fitted for my new orthotic.  It was hard…I cried…but it also gave Rolf and me the opportunity to thank Ralph and his team for their tender care of Rudy and that always feels good.  The reality is, I can’t deny my felt need for the orthotic anymore.  My legs are getting weaker and it’s getting harder to lift my left leg high enough to insure I don’t trip on my lifeless, droopy left toes.

Many have asked lately how I’m doing physically.  I described my symptoms as “annoying” a few months ago…they are more debilitating now and I’m feeling more and more fatigue which is discouraging.  😦  My symptoms started in my legs and speech and I’d say these are the areas most affected still just to a greater degree.  I’m losing control of the muscles in my mouth/throat and it’s taking me longer to speak/eat/etc.  Next up on my “Things I Don’t Want To Do” list?  A swallow test scheduled for May 14th.

Luckily there’s been lots of distracting fun lately too…

IMG_1354
A Belated Birthday Tea at the El Encanto in Santa Barbara!…
IMG_1469
And another Belated Birthday Celebration at the Bacara Resort!! I have the sweetest friends!
IMG_1422
I attended a “Grief through Art” workshop at the hospice center and am not surprised to find I’d much rather spend 5 hours quietly working beside other grieving people creating art than spending 1 hour talking to them in a support group. 😉  Ha ha
IMG_1479
A visit from Rudy’s godparents Grace and Marlin…
IMG_1466
…and Uncle John.

 

Sadly, Olivia’s regular LAX season ends this week but it sure has been a thrilling season for her and the team…and those of us who have gotten to watch!  The MOHD Squad is definitely going to go through withdrawal once the DPHS season is officially over.  Good thing we have the boys’ return for summer (in LESS than TWO weeks!!!) to look forward to.  🙂

 

IMG_1473

IMG_1474

OliviaGeyling_002_03_27_2018

Love you friends!  Thank you for your ongoing prayers!!!

Spiritual Serenity

I learned recently that the original Hebrew root of “Be Still” means to “Let Go” transforming Psalm 46:10 to “Let go and know that I am God”…and then somewhere on the internet I read that “Psalm 46:10 encourages us to reflect on what God can do in the face of what we are unable to do.”…I like this.  I’ve been reflecting on this mini-paradigm shift of one of the most powerfully understated passages in scripture the past few weeks and I like where it’s leading me:

“Be still and know that I am God.”  Psalm 46:10

I have stamped this verse on jewelry, printed it on bookmarks and I’ve sung more than a few songs about it over the years and it’s meaning has always centered on a physical stillness for me…be still, be quiet, be calm…but I don’t think I’ve gotten it quite right, especially if it’s root meaning is to “let go”, because life has taught me that the process of letting go varies greatly.  Sometimes letting go is clothed in quiet acts of obedience as “be still” might imply but more often than not, my “letting go” is loud.  In recent months my letting go has been clothed in deep, guttural groans of grief but in other seasons of my life it has been clothed in shouts of liberating victory!!  Sometimes it’s wrapped in such promise and sometimes the process is strangled by fear.  Either way, though, what we are left with is the great I Am!  No matter how threatening the storm that is swirling around me may be and no matter what the process of letting go looks like, what God is commanding me to do in this verse is to trust Him…a faith derived from a steady and deep understanding of who I know Him to be.   Let Go and know that I AM GOD!  Sometimes it’s more empowering for me if I switch it up a bit…Know that I am God and LET GO…let go…let go of trying to figure it all out…let go of the worry or shame or guilt or pain…let go of the manmade safety nets…let go of the faith in things that fall short and disappoint…let go of the fear of uncertainty…let go.  

And as it pertains to me specifically in the context of facing my mortality, the process of letting go doesn’t mean to give up or resign myself to a death sentence…no way!  Just the opposite!  The call to trust God and let go is to let go of all the things that might be hindering me from fully embracing the life I am living RIGHT NOW and the promises of God that continue to be true for me…no matter how threatening the storm is!

Although there is a physical calmness in our household (for which I’m grateful), what I’m striving for is a continued spiritual serenity…an inner calm that creates space for life to be richly lived…for all the Geylings.  🙂  Will you join me in that prayer?

IMG_0198
All hands were on deck when the boys were home for spring break…sharing the worship platform with my kids and good friends is truly my greatest joy.
IMG_1253
The MOHD squad had the pleasure of accompanying our niece Jessie on her very first visit to Disneyland last week along with her mom/Rolf’s sis Cora…#happiestplaceonearthbutnotforrolf
IMG_1239
This one was for Rudy!
IMG_1233
Chillin’ with the big guy.
IMG_1242
14 HOURS in Disneyland/California Adventure and we’re still smiling!  Yay us!

It’s All Relative

So, this is an emotionally packed week…the big boys are home for spring break (Ya-hoo!),  Olivia’s long-awaited lacrosse season is officially underway (Go Chargers!), I celebrated my 52nd birthday last week (Cheers to me) and we get to celebrate Max’s bday together as a family on Saturday (so fun!).  It is such a joy to have the boys home…life just feels a little lighter when we’re all together but, at the same time, there is a heaviness for me that is hard to push aside.  It’s the strangest thing…how can life be lighter and heavier at the same time?  Idk, maybe it’s a separation of heart and mind kind of thing…the laughter and fun we share being together lightens the heart but the thoughts that occupy the mind weigh heavier as we journey the losses together.  I’m not sure how it all plays out exactly but the reality is that I feel Rudy’s absence so much more acutely when the 5 of us are together and am left missing him more but I wouldn’t have it any other way because he also feels closer when we’re all together.  It’s all so relative.

I had a bit of an existential crisis last week around my birthday.  It wasn’t as simple as fretting over turning another year older.  No, I was happy to be celebrating another birthday (I would celebrate 40 more without one complaint!) but my crisis was centered more in what felt to be the meaninglessness of it all.  Hear me out, I don’t mean in any way to minimize the meaning of the 52 years I’ve lived so far or the value of the years I have left but there is something meaningless for me in the “number” being celebrated because it, too, is relative…AND I don’t mean in the hopeful “5o is the new 30” sort of way.  It works the other direction too…especially with ALS.  I’ve heard ALS described as an expedited aging process and I’m finding that description to be true.  I may have just celebrated my 52nd birthday but I feel more and more like I’m in my 80s as I work hard to navigate the bustling world around me with my growing limitations.  When you’re 52 years old and you can barely pull yourself up off the toilet seat or walk down the hallway to the kitchen and back without getting winded, numbers cease to provide an accurate framework of expectation and, therefore, become relative.  In short, the number of candles on the birthday cake really doesn’t matter anymore.  So, what does matter?  Well, I think the knee-jerk response to that question is often “quality over quantity” but even that can fall short depending on what your definition of “quality” is.  One of my favorite books of the Bible is Ecclesiastes which is interesting to me because it’s theme is this very subject and I’m experiencing it at a depth never before realized…the author’s questions are my questions and there are no simple answers.  I guess it’s time to reread Ecclesiastes.  😉  In the meantime, no more birthdays for me…I’m going to find a way to celebrate EACH day.

IMG_1144
The boys are back in town, boys are back in town…
27750276_10155702892894213_638686398721932680_n
Yay! Girls lacrosse is IN SEASON!!!
IMG_1146
Best belated birthday gift!

Another special gift this week was the opportunity to see Max’s concert choir perform my favorite piece they do at the last stop of their choir tour here in Santa Barbara!!!  This is an original piece written by Max’s professor depicting the day of Pentecost…(Acts Chapter 2)…I wish you could experience it in person but here’s a little video sample:  Turn up your volume!  😉