A New First

Back in the day when it was uncool to kiss your mom in public, my kids had two options. They could either voluntarily give me a quick kiss on the cheek OR they had to endure a big attention-seeking kiss from me that often lingered way too long. I thought about that when Max headed back to school a couple of weeks ago. I laid motionless as he hugged and kissed me good-bye. Oh how I longed to wrap my arms around him, give him a big kiss and linger…for a really long time. I sure miss those simpler days.

I experienced a new first recently. I said “F&ck you!” to Rolf in anger…first time in 27 years…and, no, I wasn’t angry at my disease, I was straight up angry at Rolf. Fortunately the visceral impact was diminished quite a bit by the fact that I had to repeat myself five times and ultimately spell it out to be understood.

Speaking of visceral experiences, I also recently thought a little too long about taking my life. I can honestly say I have never felt that level of desperation in my lifetime. The urge passed and, of course, I can’t physically do it anyway but it is a fleeting thought made more complicated by the fact that physician-assisted suicide is legal in California. I know that a lot of people worked hard to get that law passed in 2016 and it brings comfort to some but selfishly I wish it wasn’t even an option because it feels like a strange carrot being dangled in front of my suffering body. That’s not how I want my story to end.

I spent a large portion of my adult life working hard to preserve life and I always lived with the mantra, “Where there is breath there is purpose.” In a perfect world I don’t think our bodies would outlive our minds or our minds would outlive our bodies. I envision we’d all just go to sleep and not wake up when our time came. But the world isn’t perfect and my convictions are being tested beyond what I ever dreamed. I’m learning over and over that life is one big exercise in discovering purpose and beauty in all the imperfection. I want to live my life out naturally and experience the purpose of my final moments in word but the living it out is hard and frightening. It’s a classic “easier said than done”. 🙂 Please pray for courage and joy and laughter and all things light and hopeful. I said to Rolf and a friend the other day that we won’t get through this unscathed or without a few war wounds along the way but it doesn’t have to define how this story ends. I will continue to count on there being purpose in every breath…especially when I consider who the Giver of my next breath is.

But, you know what? Even if my mantra is untrue and I actually outlive my purpose, I have to remind myself from time to time that there is great value in being present if only to see purpose being lived out in those I love, like I did this weekend watching Wilson preach…

FOMO

As the summer winds down the activity level in our household is ramping up. Back-to-school shopping, garage storage reorganizing and car decorating are all indicators that Max and Olivia are ready for the new school year. Olivia headed off today for her first day of her Senior year with a giant smile on her face. Max is dutifully organizing his boxes of college gear and getting packed up for his return to Point Loma on Sunday. Wilson is busy keeping in tip-top physical condition with his daily workout regimen and ruck-marches and with Rolf at work that leaves me to hold down the fort at home. I have slowed down to a literal standstill making my fear of missing out escalate to an all-time high. Just this morning, for example, Rolf and Olivia went out to take the traditional first-day-of-school pictures and it was so hard for me to not be out in the middle of it. The family has their full days of activity, constantly coming and going (as they should and as I want them to)…I watch them come and go with a deep longing to be a part of the action. Unfortunately this is the new normal and I better figure out a way to be at peace with it before it drives me stark mad.

A few months ago I mentioned that I got a speech-generating device. One of my frustrations has been the lack of technical support I received from the company. My speech pathologist encouraged me to work with the technology before I actually needed it but the company rep with whom I was supposed to train was never available. ‘Turns out, it’s all a moot point after all because I lost use of my hands and my ability to communicate effectively at the same time. As a result I am now in the process of getting eye gaze hardware installed in the unit. It is very intuitive and easy to use and will be a game-changer for me in my ability to communicate my needs so please pray for a speedy response from insurance and all the powers-that-be. I really would love to have this resource while I can still move my eyes. So much of this process has been trying to get ahead of and prepare for an unpredictable disease which is particularly difficult when you’re also trying to conserve your energy for things that really matter. If only we had a crystal ball. Ha Ha!

Speaking of technology…we pulled out Rudy’s old iPad a couple of weeks ago to do some streaming on an old TV and were delighted to discover a video he recorded on our road trip along Route 66 the day before he passed away…Technology is amazing!

Last worship set for the summer
Having some fun with the Senior ID
Senior in da houuuuse

Beware of Hackers

Instant messaging is no longer instant for me. Texts seem to have a two to three day turnaround these days…if any at all. Keep your messages coming though because I do enjoy hearing from you and my band of friends do a pretty good job of helping me respond. I do, however, have a couple of friends who like to go rogue and insert their own responses to things. So if you get a text from me that is inappropriate or doesn’t sound like me, it isn’t. It’s likely from Greg Lawler…

We laid our boy to rest two years ago today. My heart aches with a longing (it is really hard to dictate while crying) to cuddle my boy which is kind of strange because he never was one for cuddling…he was always too busy unless, of course, it was to cuddle with his big sister to warm up after a bath. Nonetheless, there is a lot of longing going on today.

I’ve definitely noticed a progression of symptoms the last couple of weeks. My ability to talk has taken a significant hit due partly to an increasing shortness of breath. I can feel it in my chest but I can also feel it in my diaphragm as the muscle twitches are beginning to travel down my abdomen to my diaphragm. I have been feeling these twitches for the past three years… they started in my left leg and slowly made their way to my right leg and eventually my arms as this disease progressed throughout my body. They aren’t painful but they are constant and can, at times, be either annoying or distressing. I’m finding them particularly distracting now that they are in my abdomen because they feel exactly like when I was pregnant and felt my babies kick for the first time. I remember describing the sensation like little butterflies and those butterflies are back. What was once an anticipated and joyful sign of new life is now a sign of my body shutting down. This is another scary development and I really wish my body would find a plateau and sit tight for awhile.

I’m really not sure what else to say. As always, prayers are greatly appreciated. The Bible tells us over and over not to lose heart and I’m having a hard time heeding that command. I’m stuck between wanting to do this whole journey gracefully but also wanting to kick, claw and scream my way through it… my reality will likely fall somewhere in between. Thank you, dear ones, for holding us all up in prayer the deeper we get mired in this shitshow. (GREG!)

Love, love and more love.

2 Years

Our family appreciated having a quiet day yesterday filled with various individual activity as well as time together. We even made time for a viewing of Cars… which never gets old. Vivid images of July 25, 2017 flooded my mind all day but images of happier times also flooded my mind and helped temper the pain a bit. A big thanks to all who sent cards and messages via text and email… every one a reminder that we are surrounded by friendship and love. We love you right back.

The Great Escape

It happened. I lost my ability to type.

Of all my creative skills (music making, silversmithing, crafting) I dreaded losing typing the most because my computer work is a great time filler, processing in words is therapeutic for me and also keeps me connected with people. I’m not sure what this means for the blog. Maybe I’ll continue my posts by dictating to a friend, like I am now, or maybe Rolf and the kids will choose to carry on but one way or another I hope the updates will continue for the purpose of prayer.

So how am I filling my time? You might be disappointed to know that I spend the majority of my time binge-watching Dateline or 48 Hours. Not a particularly holy practice but I find solace in being able to say I don’t envy any of their stories. To be honest, life is becoming less about adjusting to a new normal and more about escaping my reality. When I’m not at church or at Kyle’s Kitchen listening to the boys playing music or at a doctor’s appointment, I am home engaged in my binge-watching or sleeping as sleep is really the ONLY time I’m able to truly escape. It isn’t quite as pitiful as it sounds…I do have the joy of family around and my friends but the days are long and it is getting harder to fill them with meaningful moments as I lose all ability to engage in life.

I’m not only feeling trapped physically but emotionally too. Many times during the day I want to meltdown with a big cry but I don’t feel that freedom because I can’t blow my nose or wipe my eyes. I just end up getting all congested and can’t breathe. You can’t imagine how frustrating it is to not be able to blow your nose or wipe your eyes. 🙂 Of course, this is a terrible week to not feel the freedom to completely unload emotionally as we prepare to face the two-year anniversary of Rudy’s passing on Thursday. 😦 If ever it felt like the walls were closing in on all sides, it is now.

I’m not sure there is any new lesson to be learned in this season. In moments of prayer and meditation I feel like God is telling me to relax and ride the wave…to lean into my lifetime of faith and coast a little bit. Winston Churchill’s famous quote (“Sure I am of this, that you have only to endure to conquer”) keeps coming to mind. More and more this journey is about enduring not only for me but also for those who are walking with me. I actually don’t think escaping is a bad idea as long as I don’t ignore the moments in my day that are life-giving…

For example, moments like this
(PC: Dale Weber)

We don’t have a specific plan for Thursday. Unlike last year, we are going to just let the day take us where it will. I sure would appreciate your prayers for this whole week to be exactly what we all need, individually and as a family. None of this is what I envisioned for our family and yet, all of this continues to shape our family in ways that are truly giving me life now. How utterly confounding that is to me and also deeply, deeply comforting.

Okay, I need to get back to my Dateline episode but I will leave you with this tribute to Rudy. ‘Probably my all-time favorite song the boys do:

Cousin Fun

The Kansas Wilsons including my mom and brother’s family arrived in Goleta last week just in time to celebrate America’s Birthday California-style. Their 3 1/2 day visit included lots of beach time, pool time and yummy Mexican food. I enjoyed getting to know my two new nephews-in-law a bit and watching my kids soak up quality cousin fun. They may be all grown up but they still play hard. 🙂 Time with loved ones is never long enough but we made the most of it, for sure.

Group photo in Rudy’s courtyard
Cousin twins
Tradition!
All grown up.
Me and my brother Steve

Gap Fillers

Having experienced the front lines of two major health crises, I’ve grown in my understanding of and appreciation for our health insurance. We are blessed and I’m grateful but navigating the complicated health care system in general is never free of frustration or big gaps in coverage & care. As Rudy’s primary caregiver and now as a patient, I’ve shed my fair share of tears over denials and bureaucratic dead ends that just don’t make any sense and end up feeling like salt in an already wicked wound. The big gap we’re facing right now is in home health care. I don’t qualify for short term rehabilitative care, nor long term hospice care (yet) and government assistance through the social security administration based on my diagnosis is out of my reach because of my lack of work history. I don’t share this to whine or engage in a political debate about health care reform but simply to illustrate that no matter how hard we try to protect and take care of ourselves, there will always be gaps in the system…which is why “it takes a village” and why I’m so grateful for mine.

For the past year and a half, these lovely ladies have been on a regular daily rotation doing my house chores & errands and in recent weeks, have helped fill the gaps in my personal care! It is humiliating and sometimes uncomfortable but how grateful I am for the tender, hands on care of these friends willing to learn how to fill a feeding tube, wipe my dirty derrière or give my fatigued muscles endless massages with no promise of a payback!!! I am humbled.

What blesses me further is that these women represent a fraction of all the friends who have offered to help…and those who come alongside us in a variety of other ways too numerous to list. So, dear village, in case I don’t say it enough, thank you. Thank you for being the hands and feet of Jesus for me and encouraging a fragile heart in the process.

My favorite gap fillers of all!…

The more dependent I become, the more grateful I am for my peeps. But there is a flip side and the more dependent I become, the more I fear being remembered as “ALS Trish”. Rolf eloquently addressed my fear in his latest poem:

“I hear you singing
The melody dances
Gracefully floating
Spinning in the air above me

I hear you laughing 
From deep within
With head thrown back
Wind and sun in your hair

I see your eyes 
Focused and inviting
Drawing so many close 
Into safety, warmth and friendship

I see your hands
Nimble and skilled
Creating beauty
Patting a happy head
Bringing order
Gently soothing a troubled little body

I hear your voice
Softly reassuring 
Forging connection
Welcoming and connecting.

Committed to see what’s really you
Not the distortion before my eyes
The preciousness of each second 
Makes the robbery of so many days 
more gutting a crime

To think that love could ask this much
Yet leave me here with empty arms
Though tears may fill my eyes
They won’t be what floods my memories

I promise”

The dedication of the remodeled rescue mission on June 20th was so rich. The generosity of so many resulted in an overwhelming honor for which our family is deeply grateful.