Holiday Prep

The pace of this last week has been much slower.  The weeks between the end of September and the start of November were particularly full so a little respite before the holidays begin is a good thing.  I started another round of Radicava infusions this week which gives me another reason to lounge in bed and watch Hallmark Christmas movies (yes, I’m one of those people!).  Actually, it’s getting to the point where I don’t need an excuse to be in bed…it’s where I’m most comfortable and where I spend most of my day…out of necessity.  I’m still doing my own self-care (i.e. showering and getting dressed) but it’s slow going and pretty much wipes me out.  A couple of trips to the bathroom and back are about all I can handle by myself during the day.  My lack of energy is no longer just a nuisance but a real hurdle in me doing the basics.

The gradual (BUT NOT GRADUAL ENOUGH!) nature of this disease is a perplexing process.  You’d think knowing what your needs are at any given point would be obvious but it isn’t…it’s kind of like standing near the edge of a fog bank…you see it coming but you don’t really notice you’re in the thick of it until you can’t see a few feet in front of you anymore and all of a sudden there is a frantic need to do something about it.  There are some things you can do to be “pro active” in this process but when it comes to certain specifics, you don’t know until you know and that is a little distressing.  I am definitely on the verge of transitioning to yet another level of support.  Each transition pushes me farther away from what is familiar and into new territory…territory that is unknown, frightening, exhausting, humiliating, territory that requires truckloads of patience & grace as well as a constant adjustment of expectations on every level imaginable.  My body feels like it started out in a pool of water, transitioned to a vat of wet cement and now that cement is beginning to harden.  It’s happening, I can feel it and there is nothing I can do to stop it.  A tough reality to face day in and day out no matter how full or empty the calendar may be.

On the bright side, I am using the extra time I have this week to do some holiday prep.  Bound and determined to hand address all 400 of our Christmas cards this year, I got an early start and am chipping away at the list a little bit at a time (address a few, take a nap, address a few more, take a nap, etc, etc).  🙂

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Ho, Ho, Ho! I LOVE Holiday prep!!

Two of my sweet friends came over yesterday and helped me get a jump start on a couple of projects and some wrapping while we listened to Christmas music…now, THAT kind of help I can embrace enthusiastically.  Ha Ha  Oh friends, who am I kidding, I’d be doing all this Christmas prep already with or without ALS!!!  I’ve said from the very beginning of this journey that I wanted to stay true to myself so, I guess, my hyper organized approach to Christmas is a good example of that.  (Yay for the fun of Holiday Prep!!)

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Rolf and I on our 26th wedding anniversary. November 7, 2018

Dia de los Muertos

Thanks to the 2017 Disney/Pixar film Coco, the Mexican “Day of the Dead” holiday is more widely known and part of popular culture than ever before.  I didn’t know anything about it until I moved to a predominantly hispanic community 28 years ago.  It is observed from October 31-November 2 so when I was first introduced to it, I thought it was Mexico’s version of Halloween and because I wasn’t a big fan of the skull and La Calavera Catrina symbols associated with the holiday, I didn’t really pay a whole lot of attention to it in general.  I didn’t understand it’s deep historical roots or it’s profound meaning at that time which is why I’m super glad I took the time to learn more about it over the years.

As I understand it, the holiday at it’s core is time set aside for family and friends to gather and honor loved ones who have passed away.   Dia de los Muertos (or Dia de Muertos) traditions include building altars to honor the deceased, preparing the loved ones’ favorite foods and visiting their graves with their favorite possessions and gifts.  Long ago, the holiday was observed for a whole month but the modern tradition lasts three days with November 1st being reserved specifically for dead children and infants…known as Dia de los Inocentes or Dia de los Angelitos…and November 2nd for deceased adults…and as Coco so beautifully illustrated, it can be done with such color and creativity and enthusiasm!

I have an even GREATER appreciation for the love expressed through the observance of this holiday as I’ve received word that Rudy is being included in some very special tributes this year…

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Rudy is pictured front and center in Nurse Gina’s altar display!!! What a sweet act of love by his former night nurse.
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Rudy’s former teacher “Miss A” texted me a picture of this poster displayed at his school. The students were encouraged to share a name of a deceased loved one and and then talk about what gift they’d bring to that person. If you zoom in on the picture, you’ll see many of Rudy’s schoolmates listed his name and said they’d bring him cars!!! What a sweet comfort!
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…and the tradition of bringing gifts and favorite possessions to the gravesite makes our collective effort on the year anniversary of Rudy’s death back in July even more meaningful! Yay! Way to go friends!!

As I was looking closely at Nurse Gina’s altar picture, it dawned on me that we have our own version of an altar!!!  We have a space on our living room cabinet where a collection of pics have gathered over the years as our loved ones have passed away…

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Well, given that today is November 1st (Dia de los Inocentes) and we’ve already taken  “gifts at the gravesite”, I guess the only thing left to do is to whip up some pizza, tomato basil soup and ranch dressing.  Love you Rudy!  You are remembered and celebrated by many today and we are grateful for the village of friends that still thinks of and loves you too.  Big hugs!!!

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Eating his favorite at Kyles Kitchen…tomato basil soup…in 2017!!!

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(P.S.  I think it’s interesting to note that Rudy’s original due date was November 1st.  He ended up coming a month early…how strange it would be now if his birthday had been November 1st)

 

Helicopter Parents

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Rolf and I enjoyed a gorgeous Saturday up in San Luis Obispo this weekend to watch Wilson compete in this year’s Ranger Challenge.  He has been a member of his ROTC battalion’s Ranger team every year since he was a freshman and it was a real treat to finally see him and his teammates in action.  We did, however, stick out like sore thumbs since these are not typically spectator events buuuut…..we didn’t care!  Ha Ha

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LTC Doyle caught a picture of Wilson being a beast while Rolf and I were in the background looking like dorks with our cameras fixated on our boy! 🙂  #helicopterparents
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Team work!
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Ok, I admit, in our excitement, Rolf and I might have gone a little overboard in our photo documentation…the quote of the day was by Wilson right after this picture was taken…”So, we’ll see you at the next station then?” Which is code for “You can move along now.” 🙂

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Each competition course is different but all consist of several timed stations that require the team to complete a task.  Yesterday’s stations were spaced along a 12 mile course that the participants marched with their 40lb rucksacks!  After 6 1/2 hours of continuous competition and ruck marching, the cadets had to complete an obstacle course that included the following…

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Over and under EACH rung!!
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To the top and back!

It was an impressive effort by all the cadets and Rolf and I were in awe of their determination and grit.  When all was said and done the Cal Poly SLO team had home base advantage and won the competition but Wilson’s team came in 2nd place! Woo Hoo

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So proud of you Wilson!
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And, while we’re at it, here’s an important PSA for ya!

The base we were on had a display of antique helicopters, army airplanes and trucks.  Rolf and I couldn’t help but think of Rudy the entire time we were there…he would have LOVED this outing…no crowds, lots of cool vehicles to explore & room to roam and, best of all, seeing Wilson!!

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April 2017

He is never far from our thoughts in all that we do, that’s for sure.

 

 

 

An Ongoing Evite

Olivia temporarily set aside her XC running shoes this past weekend and pulled out the lacrosse equipment for an off season tournament here in SB.  We enjoyed extended time out on Santa Barbara’s beautiful polo fields and the event was made even sweeter by a spontaneous visit from big bro Wilson and family friend Johanna.

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Livy Jo and Johanna
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PC: Nancy Naretto

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TWO entrees Olivia?!?! Ha Ha She worked up a big appetite after two full days of LAX. 🙂
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In addition to the Lax Showdown, Santa Barbara was host to the annual DP XC Invitational a couple of weeks ago…another good reason to be outdoors enjoying the amazing SB weather and cheering for our girl, her teammates & friends!

We’ve had a lot going on this month…big milestones, big events, fun day trips, lots of visitors and special outings.  It’s been a wonderful month with family and friends as well as a difficult month with many tears and an increasing battle with depression.  Part of me wants to fill every minute of every day to completely distract myself from the heaviness of it all but I’m also finding that if I don’t carve out the space and take the time to gather my thoughts, I get anxious which only adds to the feelings of depression.  Balance on many levels remains key to coping with and managing this journey.

I so appreciate the opportunity that today’s technology offers me to process life in a blog that can be shared so effortlessly with family and friends.  What started out over a decade ago as an effort to keep folks informed about detailed medical information regarding Rudy ended up turning into a precious family journal over the years and morphed again this last year into a personal record of life and loss.  I may not be in a season where I feel the freedom to invite people to much as it has such an emphasis on the future, but I do feel the freedom to invite people in and that is profoundly important to me right now as it allows for a connection with others and is often a catalyst for meaningful conversations at a time when I feel increasingly isolated.  I guess you could say the blog is an “evite” for others to share in a life experience that is painful and threatening but also rich and rewarding.  😉  Your willingness to continually “accept” my invitation blesses me deeply and I thank you!

On the medical front, the increased weakness in my right foot warranted me getting a brace to match the one I’ve been wearing on my left leg.  I questioned why it was even necessary to get the additional brace if my mobility becomes increasingly limited and I can’t walk anyway, but both the Dr. and Nobbe confirmed the braces will be necessary for transferring from one surface to another in the future so now I look like Rudy.  🙂  What a strange, surreal, somewhat familiar path this is…

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Mommy and me AFOs.

I can’t believe October is winding down…next week is Halloween and another SBRM graduation!!  Wow!  Time is flying staggeringly fast and I’m finding that a little unsettling but Autumn is a favorite season of mine so I guess I should embrace it.  Fall Blessings to you and yours.

 

 

 

 

 

Public Appearances

The past couple of weeks have been fuller than normal for us in recent months and I’m paying for it now but it’s soooo worth it!  My limitations continue to be an adjustment for us all but we’re figuring it out, finding a sweet rhythm and learning to pace ourselves.  I’m grateful for the support of family and friends that help make the life we attempt to do possible.  Although I’m not as independent with the wheelchair as I hoped I’d be, I do enjoy outings more with it and am so grateful for the fun it allowed me to have this past week especially…

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Wilson came home last weekend and was able to join us for the SB Rescue Mission’s annual fundraising event out at Dos Pueblos Ranch…it was a beautiful afternoon..’so glad these two and Oma were with us.
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Last weekend was also DP’s homecoming…and Olivia’s debut as the Charger mascot!
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And how fun it was to crash Olivia’s homecoming photo shoot with her friends…

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A girl and her dad and Oma.
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Missing Max!

On Wednesday, our local Fellowship of Christian Athlete clubs participated in an annual city-wide outreach and, as a member of the student leadership team, Olivia shared part of her story.  Olivia does not typically share personal things publicly so the significance of her willingness to share was not lost on me and Rolf leading up to Wednesday…how very grateful I am that she chose to put herself out there…for her own heart health as well as those who got to hear her share.  Her story impacted me deeply and taught me something new.  Thank you Livy Jo.

Rolf and I drove down to San Diego on Thursday to watch Max perform on campus at a gathering called Musoffee (music and coffee)…

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Dinner with friends Andrew and Noelle before the show!

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It was so much fun watching him have a blast doing something he loves to do…

 

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An added bonus for me was the chance to connect with this sweet gal…a good high school friend from Indy who just “happened” to be in San Diego for a family celebration! So, so grateful for Annie’s friendship and the chance to give her a BIG SQUEEZE! God is good to me 😉

Grateful!

Oops, I Did It Again!

It’s been a while since I fell and actually hurt myself but I took a tumble on Thursday when my knee buckled on the way to the bathroom and I sprained my ankle.  Thankfully, it’s my bad leg this time so it’s not that debilitating…just painful.  Arrrgh!

As it turns out, my spill is a bit symbolic because it happened minutes after Olivia successfully passed her driver’s test and became an independent, licensed driver!  Woo Hoo!  Way to go Olivia!!!  I have been praying in recent months that I’d be able to physically drive until Olivia got her license…and God answered my prayer!  Praise Him!  However, now that Livy is able to drive herself to all her fun activities and because my reaction time in my weakening right foot is getting slower it’s time for me to voluntarily give up driving.  It’s not like I was driving a ton other than to take Olivia to school each morning anyway but it’s a tough reality to go from “choosing” not to drive to not being able to do so safely.  😦  So, significant milestones continue to be marked in the Geyling household…marked with a tinge of heartbreak but mostly gratitude and relief for answered prayers!

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September 27, 2018! Yay Olivia!!
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My very own “Dial-a-Ride”!!

10 Years

Today is October 1, 2018.  Today would have been Rudy’s 10th Birthday.  Double digits!!!  How proud Rudy would be!

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October 1, 2008 was a Wednesday. I went into labor a month early and because of the high risk nature of my pregnancy, I was transported to UCLA from SB Cottage Hospital by ambulance. There were a lot of tears that day but I didn’t want Rudy to see sad pictures of his birth day so we made sure to capture only smiles in the pictures.
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His was a quick labor…he was eager to get his show on the road!

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He was immediately whisked to the NICU and sedated to keep him calm before his open heart surgery.
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Soon after, he was transported to the CTICU for closer monitoring by his cardiac team.
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The kids’ first meeting…

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That was a scary first introduction for the big sibs and I remember being so proud of them…they were so brave and respectful and compassionate and inquisitive and funny and concerned…they were so themselves!

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My head hurts.  Today is harder than last year…I think I was in shock last year, distracted by so many other things going on and numb on some levels.  Today I’m feeling grief that is deep and specific to Rudy alone.  His presence is profoundly missed as Rolf captured in his reflection for today…

On Rudy’s 10th Birthday:

The collection of broken remotes hasn’t grown since you left,
Yet I’m acutely aware of how many potential additions now lie readily within your grasp—
Down low on the couch,
Right there on the end table.

My full coffee cup sits in the danger zone,
Precariously next to me on the couch cushion,
My free hand always at the ready should you pounce. 
But there’s little chance of that.

You would be too tempted by how easily the DVD cabinets could be opened and emptied,
We only recently realized there’s no need to keep the doors tied shut.

Or the lure of the open front door might prove irresistible 
Provided you still remember that too much giddiness leads to detection. 
If you could suppress the urge to squeal or call out “See ya!”
Who knows what adventure might await?

How I long for a few moments of panic,
Outing my parenting gaffe to the neighbors as I call out in search of you.
I’d happily make sense of all the books dumped out in front of the bookcase,
Trying to figure out where to tape in all the torn-out pages.
Lots of time for that since there’s no Hot Wheels clogging the tub drain.

I miss your happy chaos.

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Rolf, Olivia, Oma and I will celebrate our boy later today with a trip to Kyle’s Kitchen and a special dessert (hopefully Oma’s chocolate roll cake!!!).  I wish the big boys could join us but we’re all close in thought, for sure.

Looking at all the pictures on this day ten years ago, I’m reminded of how uncertain everything was…there was real concern that Rudy wouldn’t survive his birth or his first surgery or his harrowing recovery…there were so, so many wrenching twists and turns in the very beginning.  Honestly, it’s hard to look back in retrospect, to see it all in it’s entirety and comprehend how it was even survivable for any of us.  We may not be celebrating 10 years with our boy today but we do stop and celebrate the 8 1/2 years that were his life…a life that was rich and impactful and truly happy despite all of the challenges.  Happy Day of your Birth Rudy!  ‘Forever grateful for you…forever in love with you…forever changed by you.