Here We Go Again!

It honestly feels like Max and I just picked up Olivia from her last day of 10th grade and here we were dropping her off for her first day of 11th grade this morning! Of course, the boys made sure her send off was done out LOUD with great fanfare as Max captured on his IG story…

If the boys hadn’t been there to make me laugh so hard, I would have been sobbing as we watched our girl walk away toward another school year…I have fears specific to today that are too somber, too personal to articulate but as burdensome as they may be right now, I have great confidence that Olivia is going to ROCK this school year with her trademark humor, grace and (day to day relevant) faith. I’m so grateful for her, her big brothers, her band of close friends and the folks in her life committed to praying for her. I envision her buoyed high above the turbulent waters that swirl beneath her…dry, safe, secure and joyful (with a deep, nourishing joy)! May it be so, Lord, consistently all year long!!!

Although Wilson moved back to APU a week and a half ago, he has been back and forth a couple of times in the last week to tie up loose ends and just left “for good”…it is hard to believe he is beginning his senior year! The reality of that is starting to sink in for him…he’s excited and we’re excited for him. Like with high school, we don’t want him to put the cart before the horse and check out prematurely…there is a lot to embrace this last year of college and we want him to soak it all in but Wilson has set a post-college course for himself that is thoughtful and deliberate…he has a lot about which to be excited and it’s fun to watch him live it out.

Our big boy and his recent big boy purchase!

Speaking of new-to-us vehicles, our family has acquired THREE this summer!!! #1 Wilson pictured above with his very own Toyota Tacoma (a baby version of his dad’s Tacoma)…

#2 Max and his very own scooter!!! Perfect for commuting on The Point…

(Following in his mother’s footsteps)

#3 My Harley…

Ha! Just kidding! I enjoyed my first RIDE on a Harley on Saturday with my friend Rick! Ha Ha Ha

Rudy got to sit on it a while back too! 😉

No, actually, #3 is another medical van! Yep, we are there again.

I’ll share the van acquisition story with you sometime when I have more emotional energy because it’s a real special story but, for now, we are grateful to have a van that will accommodate my wheelchair and we’re trying to find our footing in the shuffling of mindsets and the juggling of vehicles (my felt physical needs are kind of stuck between what the Mazda offers me and what the medical van offers me so each outing will require an assessment and a choice). I think I had an unrealistic expectation that the medical van would be an easy adjustment and an effortless move toward greater independence for me…I rode in it for the first time yesterday and was, once again, hit by reality…there’s a learning curve to getting in and out of it with a motorized wheelchair, I can’t latch in by myself and I was caught off guard by a flood of memories that came rushing back as Rolf got me settled knowing exactly what to do and how to do it. How is it that we’re back here again so soon?!?

I’ve had several friends recently make a point of telling me they are praying for Rolf and I do appreciate specific prayers for him. I’m grateful God gave me him. He is doing a good job of balancing self-care, work and home but the demands on his time and mental energy are great. He has been chipping away at a long list of difficult “to dos” (i.e. updating our will/trust paperwork with a lawyer, bathroom modification remodel, acquiring durable medical equipment, fixing broken water heaters, etc, etc, etc) and it feels, to me, like things just pertaining to me can easily be added to that list on a daily basis. I asked him if he was feeling overwhelmed and he put it well…he said, “It’s a relief to get things marked off the list but none of it brings any joy” (except for maybe getting the water heater fixed – warm showers bring me joy). So true! For me, the accomplishments serve to declutter the mind but not lighten the emotional burden. It’s still crushing and, at times, suffocating.

So, there’s lots going on around here and I have some work ahead of me adjusting to and becoming proficient in the equipment I’ve acquired this summer. Updates to come…:) In the meantime, may remnants of summer fun linger a while longer for us all! Back-to-School Blessings everyone!!!

My Faith > My Fear

We took Wilson back to APU on Monday. He is actually coming home again this weekend so it didn’t feel like the “official” send off but it is the first indicator that summer is winding down fast. Olivia starts her junior year at DPHS next Wednesday and Max returns to PLNU three days later. We took advantage of us ALL being together on Saturday and made a quick stop at Rudy’s former school to sit on the “Rudy Buddy Bench” a bit and leave behind a Lightening McQueen car in his memory (he would be going into 4th grade and turning 10 this fall).

Rudy’s Buddy Bench at Mountainview School

We also took a few minutes to think about this coming year and come up with a word or short phrase to focus and inspire us…and since I’m all about visual reminders I made everybody stamp their word/phrase on a washer to hang on a key chain or turn into a bracelet/necklace. Ha Ha! The family picked some good ones… “grow”, “faith”, “hold on tight” and “all my hope”. My choice? A mantra I’ve been repeating over and over to myself for a few months now…”My faith is greater than my fear” (but I shortened it to “My faith > My fear”).

I don’t know how often a typical person thinks about death but I’ve actually thought about death A LOT in my lifetime…certainly in the last decade as we were confronted with the very real threat of death in our household but I thought about death a good deal as a child too. My Grammie Fink made me these embroidered wall hangings when I was little and I remember praying the prayers every night at bedtime and every morning when I woke up. I was very much aware of death as a child but I was also very much aware of heaven and had a sincere hope of heaven which seemed to quelch any fear I might have had of death as a child.

Not fearing death is an amazing gift…especially when you’re actually facing death but it doesn’t mean this process I’m in isn’t without fear. I may not fear death but I do fear the process of dying…especially by way of ALS. This is a torturous disease and I haven’t even hit the really tough stuff yet but as I start to feel limitations due to lack of strength in my arms/hands (i.e. not being able to lift a plate of food into our microwave or undo a button), I realize I’m staring down some pretty scary realities and its terrifying. In addition to the physical stuff, I’m also noticing greater frustration and irritability and that scares me too. I don’t want to lose myself in this process. I want to feel the wide range feelings but not wound my family in the process. I don’t want to add to the suffering by being grumpy and unhappy.

When I think about hardship in life, it’s easy for me to get fixated on life since Rudy arrived but a friend I’ve had for 30 years wrote me last week and reminded me of some significant “seasons of suffering” as a young adult, young wife and young mom predating Rudy for sure. In her reflection, she went on to write “you perfected the art of ministering out of your pain, your struggles, your heartaches. Trish you may not know how rare that is”. Besides being a very generous thing to say, my friend hit on something helpful. Somewhere along the way I learned that, though it can be excruciating, there is rich, intrinsic value in embracing suffering and fear and doing the hard work of processing through it (as opposed to stuffing it or numbing it or running away from it). In retrospect, it not only helped me put life into perspective and highlighted my need for God but it also served to shape who I am at my core…btw, if others were ministered to in the midst of it, well, that was God’s work for sure ;).

I guess what I’m trying to say is as fearful as I am in facing the growing impact of ALS on me and my family, it is how my life is unfolding and I want to live it…I want to glean all that is good internally and eternally and not allow the fear in the experience to control my life. I think it is important to add that I absolutely believe in “eternal glory” as described in 2 Corinthians 4:16-18 and my childhood hope in heaven is still secure today but it is hard for me to truly immerse my mind in it because I’m not there yet…I’m still slogging it out in the muddy trenches of pain and heartbreak…I can take great delight in the glimpses of heaven I see in nature and in the love that surrounds me but they are still just glimpses. This is where faith comes in and though it may be reduced to some schlocky Christian slogan, “My Faith > My Fear” is a lifeline mantra for me as I make the daily choice to not be overcome by my fear…especially since Christ already did the hard work of overcoming for me. 😉

If you have the time and interest, I highly recommend this podcast . It’s a meaty conversation with Kate Bowler (Duke professor, author, historian) who is processing suffering on a level that I can really relate to and inspires me. Here’s a link to her NYTimes article from 2016 as well.

Round Two

We are thrilled to have the boys back in town…Wilson arrived home from Ft. Knox a week ago today and Max got home Sunday night after his month long tour! Yay! We have just one week more with Wilson before he heads back to APU and Max will be home for a couple of weeks before he returns to Point Loma. The summer has passed by much too quickly…as it typically does.

Olivia is particularly happy to have her big bros home!!!

Since the boys were both gone on the 25th, we appreciated having a little time together at the cemetery so they could experience the “mountain of cars tribute” for themselves. They got a chance to arrange them all and, as boys do, had to stop and play with them before they all got placed. Ha Ha! Rudy would be so pleased.

Thank you Lucas C. for the fun hat you left for Rudy!!!

Last year on this day, August 7th, we laid our boy to rest. I’m reposting the video of Rudy’s funeral service and his memorial slideshow below…followed by a few images from his burial that I didn’t post last year. It was a remarkable day…so full of love and many tears but laughter too. In the days following Rudy’s death, his journey back to California from Guymon, OK by way of Oklahoma City was such a long one and the arrangements for his service and burial here at home added another week to the whole process so when the day finally came, as painful as it was to say our final goodbye, it was time…it was time to lay Rudy to rest. Commemorating today is definitely part of observing the 1st year anniversary for us and I thank you all for your part in holding us up these past couple of weeks in particular through your prayers and love.