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
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…
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
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!!
He is never far from our thoughts in all that we do, that’s for sure.
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…
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)…
It was so much fun watching him have a blast doing something he loves to do…
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.
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…
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!
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.
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! 😉
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.
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.