The Lenten Season

It’s hard to believe that we are less than 5 weeks away from Holy Week which means we are well into Lent already. I love that the Christian calendar has “seasons” of preparation…the Advent Season to prepare for Christmas and the Lenten Season to prepare for Easter. As I grow older, I appreciate more and more the discipline of setting time aside to prepare for and anticipate the beauty of these bookend celebrations in the life of Christ…taking time to prepare makes them so much richer.

BUT as has been the case with ALL the holidays that have come and gone so far this first year without Rudy, Surprise! Surprise!, Lent feels different this time around too. A week or so before Lent began, Rolf and Olivia were discussing what they were going to “give up” until Easter (as is tradition) when I blurted out “I’ve given up enough this year. I’m going to pass.”…I said it in jest, initially, but the thoughts behind the words lingered which led me to reflect on it a bit.

The truth is, my sassy remark is exactly where my heart is…I do feel I’ve been in a looooong season of being forced to give up quite a bit…not only Rudy and a daily life as our family knew it but also my own physical abilities in recent months and things I love to do and certain dreams for my future. Granted, these are not things I willingly set aside for the purpose of focusing on and drawing nearer to God (which is the purpose of fasting from something meaningful during Lent) but the result has been the same nonetheless…to a comforting extreme.

The thing that strikes me the most in the snapshot of my life today is that as my world has gotten smaller and smaller over the past 7 months, God’s presence has gotten bigger. One of the primary purposes of both the Advent and Lenten Seasons is to make room for God in our full, cluttered lives and I’ve experienced over and over again that He will fill whatever space we allow Him to occupy…and given what I’ve experienced the last several years with Rudy and in the last several months mired in my own disease, there is great comfort in knowing that God is big enough to continue to fill the empty spaces left by my shrinking world.

I shared about my journey at a Westmont Chapel several years back and how at every significant crossroads in my life, I was led down a path that seemed to narrow my world and my impact on the world compared to what I planned when I graduated from college…it sure isn’t lost on me how the events that unfolded just weeks after Rudy passed away are a continuation of that same journey. I remember saying to God at some point during Rudy’s life “How much smaller can my world get?”. Are you kidding me? It feels like such a foolish question now! What a strange journey this is…but it is proving itself consistent in many ways and God has been consistently present in it all…filling spaces and bringing life to hardened, dead places of the heart along the way. Thankfully the reflections I shared that day at Westmont still ring true for me today, especially this prayer:

My prayer is that you recognize God’s grace in your life and experience the power within it…providing us hope in all circumstances, blanketing us with peace in all circumstances, enabling us to love one another in all circumstance, bringing purpose to all circumstances and allowing, at times, for heartache and joy to coexist in difficult circumstances.

My friend Emily sent me this amazing book of quotes she compiled over the last year organized in 40 daily readings to be read over Lent…this is her 9th book! (What a gift…thank you Emily! ) If you are a person who participates in the Lenten tradition, consider this from Emily’s forward:

“Ruth Haley Barton says, ‘unfortunately, most people reduce the Lenten season to the question, “What are you giving up for Lent?”. The real question of Lent is, “How will I return to God with all my heart?”.’ Along those lines, my friend Susanne talked about Lent in this way ‘it is not about becoming lost in feelings of brokenness but about cleansing the palate so that we can taste life more fully.'”

Now, that is rich! I love that and I look forward to exploring that some more in the weeks ahead. Blessed Lenten Season Everyone!

Oh Crap, It’s Valentine’s Day!

I forgot about Valentine’s Day…I was so relieved we made it through the holidays and got so focused on port placements & infusions that I totally spaced how significant Valentine’s Day would be this year without Rudy. How did I not see it coming? Valentine’s Day was my favorite holiday to do with the kids when they were small because it was so much fun to prepare Valentines for friends and family together. Rudy’s enthusiasm added a whole other dimension to the fun.

When I opened the Valentine decoration bin this week, I was surprised to find the really cool Valentines Rudy and I bought on sale last year for him to give out this year! He was so excited when we found them. He would have been thrilled to share them with his classmates…dog gone.

Of course, I think the tradition we’ll miss most this year is the annual recording of “Will You Be My Valentine?”. How grateful we are for this crazy collection of videos. Looking at pictures and videos of Rudy was painful for me in the wake of his passing, but they’re now becoming a huge comfort. Rolf and I find it’s pretty easy to get lost (sometimes for hours) in the pictures and videos we have of him. And even though we have hundreds of images of him…I wish we had hundreds more. Once in a while a friend will send us a picture of Rudy we don’t have and it takes my breath away…such an unexpected gift. 🙂

Well, we may not have a new rendition of “Will You Be My Valentine?” to share or a fun report about a Valentine exchange at school but it is Valentine’s Day nonetheless and, therefore, an opportunity to tell you how much you are loved and how much we appreciate the love extended to us over and over again. We are rich in relationship and we don’t take that for granted! Happy Heart Day dear ones! We love you.

The gallery of Valentines from years past.

Be Still My Soul

It’s February. We’ve turned another page in the calendar…I shared recently that I feel stuck between two epic life experiences, the loss of a child and a terminal diagnosis, which makes the passage of time complicated. The challenge to live in the moment and not get overwhelmed by the grief of the past or the anguish of the future continues to require a daily conscious effort. Embracing “today” continues to be the priority.

The past couple of weeks have been filled with a balance of time with good friends and family along with continued disease management. My permanent port was placed on Friday January 26th and my second round of Radicava infusions started today with the new port. The port has been more tender and cumbersome than I expected but it is healing nicely and, I suspect, will become second nature in time. I also started to take a low dose anti-depressant medication which seems to be helping to take the edge off a bit.

At the urging of my local neurologist, Rolf and I visited the multi-disciplinary ALS clinic at Cedars Sinai in Los Angeles on January 31st (I’m including Rolf’s detailed notes from the visit below for our records.) I can’t say I had a strong felt need to be assessed again and I wasn’t particularly motivated to make the trek down to Cedars but we did get some helpful information and I’ll probably go again in 6 months. The sobering reality that is reaffirmed with every consultation I go to is that no matter the state of the art facility or the resources at hand, all anyone can really offer me is confirmation that this is a “devastating” diagnosis and the promise to keep me comfortable down the line. Ugh. There’s a big part of me that wants to gracefully back off and just live my life out naturally without medical intervention but at the same time I have this Charlie Brown-esque hopefulness that maybe, next time, the football will stay put…that maybe our determination and commitment to the process will result in something tangible. I don’t know…I wish I could make sense of it all…I wish I had a strong feeling one way or the other and didn’t respond to each recommendation with “well, it couldn’t hurt”…I wish it wasn’t all so vague and subjective. Blah, Blah!!

ROLF’S NOTES:

Cedars-Sinai ALS Clinic visit summary

On Wednesday (1/31), we visited the Cedars-Sinai ALS Clinic. We were told ahead of time that we were only scheduled for a “consultation” and not the full clinic, as insurance will only approve the latter after a referral from an initial visit with a neurologist. Even so, Dr. DaSilva called ahead to see if a few other specialists would be able to stop by while we were there and we were very glad this was the case–made the drive worthwhile. We arrived at Cedars at 8:45, got checked in shortly after 9 and were quickly taken to an exam room–where we stayed until almost 1pm. There were a few breaks of 15 min or so, but for the most part it was a steady parade of doctors, therapists and a few of what I call “PUPs” (People of Unclear Purpose–hospitals are full of clipboard carrying mystery people that come in and ask you questions.)

We started with a pulmonary function test and then Dr. Elsayegh (Pulmonologist) came in for a consult. There was good news here as Dr. E explained that the lungs are a key determinant in ALS. As difficult as it is to lose functionality of extremities, etc., when the muscles that facilitate breathing get impaired, then major interventions have to be considered (breathing machines, traches, etc). The good news here is that Trish’s lungs function is exceptionally good. I forget the exact units, but typical lungs function at 80% and when things decrease to 60 it gets problematic. Trish was at 102 (probably thanks to all her singing), which means there’s considerable margin for her. While no one can predict how quickly the disease progresses in any individual, this could make for more of a time window.

After that, we got a very thorough exam from the neuro fellow before Dr. Lewis (Neuro) came in. Dr. Lewis was unhurried and spent quite a bit of time with us doing his own exam, answering questions, and explaining research studies. It’s reassuring to have the attention of a very intelligent and compassionate expert, but if only he didn’t have to employ his gift of communicating clearly and caringly about really difficult realities: it’s a devastating diagnosis, there are no cures, no clinical trial out there is anywhere close to landing on a cure. There are two research studies Cedars is conducting that Trish agreed to participate in as they only involved interviewing and a blood draw, so Dr. Lewis spent even longer with us conducting the study exam and interview.

After that came a speech therapist, dietician, ALS Association rep and probably a few more people I’m forgetting. The whole session was clearly being coordinated and there seemed to be good communication between the specialists, which was both efficient and caring. It’s impossible to tell the story of Trish’s diagnosis without bringing in Rudy’s death in July, so it was a comfort to not have to repeat the story too many times–most people came in aware and led off with compassion.

I can’t say we didn’t walk away a bit disappointed. We’ve learned from HLHS and ALS that, as much as you try to keep grounded and aware that a diagnosis is terminal, there’s still a part of you that goes into every appointment wishing you’d hear someone tell you there’s a cure. But it is what it is. What we can be thankful for is the assurance that we’ve got good care. The Cedars team would see us every three months if we’d like but since so much of what they said affirmed the care we are getting here in Santa Barbara, for now we will plan on seeing them every six months–unless a need arises before then.

I was going through some old CDs the other day and came across an original CD my friend Grace recorded over 15 years ago! She invited me to sing two of her songs on the project and I was struck by the timeliness of them for me now…kind of prophetic and a sweet encouragement from a young Trish and Grace…

Closer To His Heart:

Be Still My Soul:

Speaking of encouragement, here’s some more…

My niece Rachel and her new hubby Josh flew in for a quick visit from Nashville. Of course, we had to make a stop at Kyle’s Kitchen…Rudy showed up and photo bombed this pic. 😉

We got a rare glimpse into Wilson’s ROTC world with these great pics from a Ranger Challenge he participated in a couple of weeks ago. ‘So proud Wilson!!

I’m being well taken care of on so many fronts and a great example of that is my good friend Rick who went above and beyond to make sure I have a secure cup holder on my walker and a custom-made ramp up to the worship platform at church! 🙂 Ha ha! I am blessed and I’m so very grateful for the ongoing show of support from so many…as we’ve been reminded multiple times this past month at all my appointments, this is going to be a long road and I’m so grateful the Geylings aren’t doing it alone!!