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.

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.

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.

 

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…

 

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!!!

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!!

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.

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…

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!