This Time Last Year

It’s May 25th today.  It not only marks 10 months since Rudy died, it’s also the start of the long Memorial Day Weekend which means the house has emptied out.  Oma flew back home on Wednesday after her weeklong visit, Wilson left yesterday for Air Assault School in Hawaii, Max left on the train later in the day for Point Loma and Olivia left this morning with her youth group to meet up with Max at Point Loma for an annual youth conference.  Everybody is off doing great, much-anticipated things and that’s super fun.

IMG_1739
Fun with Oma!

IMG_1731

IMG_1761
Sending Wilson off!

IMG_1760

I’m not sure if it’s because we’re getting closer to the 1 year anniversary of Rudy’s passing or not but I’m starting to get preoccupied with “this time last year” memories.  Up until now, my missing of Rudy (especially on holidays) has been fairly general with quick flashes of specific moments…missing his presence mostly and being flooded with a wide range of memories from all his birthdays or many Christmases or the various Easter scavenger hunts he participated in.  In the past couple of weeks, though, I’ve kinda been haunted by memories of last year specifically.  I suppose part of that is due to the fact that how I’ve spent my time this spring is dramatically different without Rudy here…I’ve missed all the end-of-the-school-year activities with Rudy like the Special Olympics Spring Track Meet, the school open house where he showed us all his fun projects, the bowling trip to Zodo’s with his special ed classmates, our annual teacher appreciation dinner, all the field trips and parties, etc.  Oh, I’ve missed it all and the people with whom I did it all.

The memories of this weekend last year are particularly vivid…it was so full…Rolf was working on a bathroom remodel so Rudy and I busied ourselves with a trip to the grand opening of the downtown Kyle’s Kitchen and then went to a friend’s baby dedication and, of course, we spent Sunday watching the Indianapolis 500 which was Rudy’s very favorite.  I can remember random details about the weekend, what he was wearing and the toys he insisted carrying around with him.  My mind is definitely shifting toward a more specific focus as it relates to memories of Rudy and I suspect that focus will become even sharper as we approach July 25th.  Ooooo, tough days ahead.

This Memorial Day Weekend is also a bit of a de ja vu when it comes to house projects.  You may remember that Rolf demolished and rebuilt half of our primary bathroom over the long weekend last year.

IMG_6510
Rolf and Rudy working hard in 2017

IMG_6511

He got as far as the sink, custom countertop and vanity but had to stop there as we were getting ready to host family and friends for Max’s graduation and needed a working bathroom.  The plan was to finish the whole bathroom remodel when the house emptied out again during the summer…well, the project has gone untouched since.  Rolf kind of lost his remodel mojo and I haven’t had the mental energy to tolerate the upheaval either.  However, it’s time to get it done and Rolf is going to resume demolition tomorrow.  Interesting to note, the major project delay is turning out to be fortunate timing for us as we will be doing modifications necessary for me down the line that we wouldn’t have done originally and the benefit of that isn’t lost on me and Rolf.  I’ve always been grateful for Rolf and his excellent thought, planning and execution of projects on behalf of our family over the years and that is especially true of this bathroom project.  The alternative modifications aren’t fun details to think through but he’s doing all the thinking for us and making it happen.  Thanks Rolfi.

Speaking of “this time last year”, this is what Rudy was doing on May 25, 2017…a duet with his sister.

Good job Rudy.

 

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!!!

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!

 

 

 

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!  😉

Where Are You Christmas?

I just heard Faith Hill’s “Where Are You Christmas?” on the radio.  I’m not sure I ever really listened to the words of that song before…what a beautiful song.  I think I just adopted it as my theme song this holiday season…”My world is changing.  I’m rearranging.”  Yep, that kind of sums up where my heart is today.  But how ALS and Rudy’s absence is changing this Christmas and our family’s world in general is only magnified by what has been going on in our community for the past 12 days.

The Thomas Fire that broke out in Ventura County a week ago last Monday made it’s way to Santa Barbara County on Sunday and is snaking it’s way up through the south county communities of Carpenteria, Summerland and now Montecito.  We aren’t in any fire danger here in Goleta but Santa Barbara and Goleta have been blanketed with smoke and ash since the fire broke out which has severely impacted our community’s day to day.  Our local schools closed last Thursday and won’t reopen until after New Years, many businesses have shortened their work days significantly (if not closed all together) and we’re all donning attractive face masks when out and about.  It has been heartbreaking to see many we know affected by this massive fire (currently the 4th largest wild fire in CA history) and it will continue as containment is not expected before January 7th!

So far, the festive holiday events we typically participate in have all been cancelled or postponed…certainly adding to the question “Where are you Christmas?”.  It isn’t feeling particularly festive or Christmasy around here.  We were doing a great job making the most of the situation the first few days…Olivia had some friends over to bake Christmas cookies, we’ve watched a crazy number of Christmas movies and got creative with some crafts but the negative impact is starting to surface.  There is just so much to be depressed about and peppy, positive Patsy is fading.  Thankfully the house is filling up as Max arrived home on Wednesday, Wilson comes home later today and Aunt Andi flies in from the east coast this afternoon for a quick visit!!  That’ll switch things up and lighten the load considerably!  It may not feel like Christmas this year for lots of reasons but thankfully the wonder, the anticipation of good things to come, the hope of Christ and the reassurance of God’s presence among us is…always.

IMG_0721
Don we now our gay apparel.
IMG_0726
We woke up Sunday morning to a dusting of what looked like snow…but it was ash.
IMG_0737
Olivia and I decided to head south to escape the poor air quality for a few hours and do some Christmas shopping. We went from this…
unnamed
…to this in little over an hour!
IMG_1263
I’m horrible at taking fire pictures but we passed by the fire line on the ridge over Summerland on our way home later that day.  The fire fighters are doing an AMAZING job keeping the line contained to the ridge…so impressive and inspiring.
IMG_0744
Olivia and some friends headed down to the fair grounds to help with the animals that had to be evacuated from nearby ranches and the girls were given the fun job of comforting the animals! I’m not sure who enjoyed it more. 😉
IMG_0718
‘Went to Kyle’s Kitchen for some comfort food and found that Rudy continues to be “present” spreading his trademark Christmas cheer! Thank you Ferro Family for including Rudy in your decorating fun.

I’m particularly thankful, now, that the MOHD Squad got to go down to San Diego the weekend before the fire broke out to see Max perform in his PLNU concert choir Christmas show.  The variety of numbers performed made the show fun, festive and quite moving…it was the perfect way to kick off THIS Christmas especially.  I captured their rendition of my favorite carol…

Merry, Merry, MERRY Christmas dear ones.  May these last few days leading up to Christmas be filled with GREAT JOY, SUSTAINING GRACE, PERFECT PEACE and a STRENGTH of spirit and of mind that is truly beyond what the natural world can muster!  Thank you for your friendship and love.

IMG_0731

IMG_0732

IMG_0727

7B1A1336

7B1A1428
Kinda feels like this bears repeating…”It may not feel like Christmas this year for lots of reasons but thankfully the wonder, the anticipation of good things to come, the hope of Christ and the reassurance of God’s presence among us isalways.”

WOWzers!

So, I’m just not sure we could have squeezed anything else into the last week and a half.  The out-of-towners have come and gone (accept for Oma who is staying one more week), Max’s weeklong celebration with his classmates is over, Olivia went to an out of town Lacrosse tournament and back, Rudy had a full week of medical appointments and Wilson made it home safe and sound from Ft. Knox, KY late last night after his month in Madagascar.  In between, there were pool parties and crazy antics and food (so much food!).  Needless to say, today is clear of any commitments so I’m staying in bed as long as possible.  😉

The months of senior activities and fun anticipation for the DP Class of 2017 culminated in last Thursdays graduation celebration…it was so fun to share the day with our out of town guests and hometown friends!

IMG_6632

IMG_6635

max grad3

IMG_6652

IMG_6645
Max with Oma and Grandma Jo.

IMG_6650

IMG_6649

After graduation, we hosted a house full of friends to celebrate and it was rich.  Max’s godmother, who flew in all the way from Wichita, shared some beautiful scripture and words of affirmation & blessing AND Coach Mollkoy (for whom Max TA’d this year) had a special presentation too!  Max felt well celebrated and expressed his gratitude for all the love from family and friends on more than one occasion!  Yay!  So grateful!

IMG_6615

IMG_6621

After all that, Rudy still had one more day of school…

IMG_6611
We’re not quite sure what Rudy did to deserve being in the “red zone” but it was clear the last week of school that he was DONE and ready for a break. Ha Ha
IMG_6607
Making slime with Ms. Ochoa was fun though!

Our church has an annual tradition of recognizing the graduates on “Graduation Sunday”…those promoting from 6th grade to Jr. High and from 8th grade to High School, as well as the High School and College graduates.  ‘So excited for this bunch!

IMG_6702
Love these kids!

One of the things I love most about our church is the “team effort” that goes into the investment of our youth…this certainly was demonstrated in the comments shared with (and about) Max during the service…well done, dear friends, thank you, thank you!!

We are so grateful to our moms and KS nephews and Max’s godmother for making the effort to come all the way to California for Max!  Their presence made all the celebrating even more special for sure…well done everybody and thank you, thank you!!

IMG_6654
My mom (Jo) and Rolf’s mom (Helga) with a quilt that was started by Jo’s mom (my grammie) and finished by Helga. LOVE IT!!! Such a gift from both moms in my life!!!
IMG_6691
Rudy lovin’ him some cousin time with Michael and Jonathan.
IMG_6660
Rudy and Susie-Q!
IMG_6666
The Wichita and Overland Park Kansans bonded over late night pool parties and…
IMG_6665
…bugging Max at work! 😉

Medical Update:

Rudy’s one-week break between the end of the school year last Friday and the start of summer school this coming Monday is almost over.  As it turned out, it was packed with routine dr. appts Monday through Thursday.  We still have neurology, cardiology and a trip to the dental clinic at UCLA coming up in a couple of weeks but we were able to check gastroenterology, orthopedics and the bi-annual visit to the heart clinic off our list this week.  The news from GI is that Rudy is losing weight and needs to bulk up a bit so an increase to his daily volume of Pediasure has been ordered.  Our appointment at UCLA’s heart clinic yesterday was exceptionally long (with a nearly hour long echo) but there isn’t any major change in Rudy’s heart function since December…a good thing!  The most surprising news this week came from the orthopedist who determined that Rudy no longer needs his braces!!!!  I didn’t see that coming AT ALL and it took me a few seconds to process what he meant.  Ha Ha  Dr. Early recommended we stop using the braces and track Rudy’s falls (an increase in falls may mean a return to the braces) but he suspects Rudy will grow in leg strength pretty quickly now that the calf muscle will be free to move and get exercised.  As a result, our day in LA yesterday included a trip to Famous Footwear for a pair of new shoes AND new sandals!!!!  Rudy is so proud!

IMG_673619114047_10155024807719213_8815906004439192020_n

Speaking of LA, when we finished at UCLA, we stopped for lunch in Westwood and ran into the echo technicians who conducted Rudy’s echo…guess who elbowed his way into their lunch break?

IMG_6739

So, as always, there is much to celebrate and much to ponder.  In the meantime, we’ll continue to focus on quality time with family and friends and remember to breathe once in a while!

 

Spring Break Is Here!

It’s Sunday afternoon and there is a big sigh of relief over the fact that there is no school tomorrow or the day after that or the day after that…etc!  We have a week off from school, sports and therapy and we’re pretty happy about it.  Rudy got a head start on spring break as the Goleta Unified School District schools had Friday off as well.  Woo Hoo!!!  Actually, I’m not sure Rudy is all that thrilled about spring break.  He loves going to school and being with his friends!  😉  What a blessing it is to know he is in a loving and stimulating educational environment that he enjoys so much.

IMG_5645
Ms. Ochoa and aide Daniel joining Rudy in some Move-a-thon fun!
IMG_5655
Rudy and his typical classmates in Mr. Latta’s 2nd grade class.
IMG_5659
A big thank you to all who sent Rudy a $1 during his Facebook $1 school fundraising campaign!  He earned  “Big Paw Sponsor” recognition!!!!

Rudy showed great determination during his school’s annual Move-a-thon last week and he has shown great support on the sidelines of many DPHS Lacrosse games the past couple of weeks…with both Max and Olivia playing lacrosse this spring, we get the fun opportunity to go to twice as many games as in years past!  Rudy has even made himself useful as assistant clock-keeper…

IMG_5673
Keeping a close eye on the game with Dad…

IMG_5680

IMG_5686

Rudy has been working hard on his sight words the past couple of years and began stringing them together to read simple sentences in recent weeks.  Ms. Ochoa started introducing phonics to him recently as well to see how he would respond and he is getting it!  Here’s a little sample of his progress that his teacher sent me:  (sorry the video is a little wonky)  

What a great reminder of how much fun it is to learn!!  🙂  Well, even though Rudy may not be desperate for some time off from school, I think the break this week will do us all some good.  Happy Spring Break Everybody!!