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.

PTS…D?

Thank you for your prayers. My g-tube placement last Thursday went smoothly…Rolf and I arrived at the hospital at 10am and were out by 2pm. Unfortunately, my recovery at home was stressful due to a combination of me feeling particularly vulnerable & paranoid, the unexpected (last minute) demand on the whole family to care for me and emotional exhaustion in general. I can’t say I’m experiencing PTSD, per se, but I’m definitely feeling a certain level of post-traumatic stress in this most recent lifestyle change because we are not just adding to my daily care regimen but reinstating a well-worn routine that comes with a flood of memories of our boy. I’ve just been so sad and weepy and impatient and _________ (you name it, I’m probably feeling it). I’m praying all this emotion is just part of the adjustment process and won’t linger too long because it’s heavy and exhausting.

In addition, I’m praying the supplemental nutrition I’m able to get through the g-tube will make me feel healthier and stronger physically. I can still eat by mouth but I’m limited to soft foods (‘been eating lots of pasta and mashed potatoes lately!) and I usually stop eating not because I’m full but because I’m tired. I certainly haven’t had a full or balanced diet lately so there is lots of room for improvement! Hopefully we’ll see a notable difference.

As the struggle intensifies, you need to know that the encouragement that comes our way through your messages & gifts and special memory-making moments becomes sweeter, for sure. Thank you all for the encouragement and your ongoing prayer. It indeed uplifts and sustains! 🙂

One last honor for Olivia…League MVP!
A great night of music with family and friends on Saturday at Kyle’s Kitchen…so good! Keep an eye out for the boys’ next gig!

Brand new shovels and smokin’ stogies in honor of a great dad. Happy Father’s Day Rolf!

Surprise!

I rolled out of a meeting at the Rescue Mission at 5pm this afternoon to the news that my g-tube (feeding tube) placement surgery is happening tomorrow (Thursday) at 11am! Surprise! Although Rolf and I talked with the neurologist recently about it being time to schedule a GI consult to discuss the plan for a g-tube, I guess our call to 911 last Friday was reason enough for Dr. D to expedite the process…catching us off guard a bit. This is a routine, out-patient procedure usually done in the GI office. The only reason they scheduled mine at the hospital is because I have ALS…I should be home by mid-afternoon. I’m not nervous about the procedure (‘been through this before with Rudy) but I would appreciate your prayers for the recovery. It’s hard enough for me to find comfortable positions in bed or my chair on a normal day, I can’t imagine adding wound care and pain management to the equation.

I don’t want to overdramatize the situation but I sure hope this move improves my quality of life and doesn’t diminish it. I’m going into this not knowing how I feel about it and I’m weepy. I feel like we just unloaded all of Rudy’s enteral supplies and the thought of resuming regular supply shipments from crApria discourages me more than the fact that I need a feeding tube. I know too much and have too much history in this arena to see this as anything but a major setback…I hope I’m proven wrong but tonight I’m uncharacteristically pessimistic and wonder if all the effort will even be worth it…but then again I want to see my baby girl graduate from high school so…! Prayer PLEASE!!

I’ll be off the grid for a few days and I’m already behind in responding to texts and emails this week so if you don’t hear from me (especially regarding requests to visit), please be persistent and try again. 🙂 Thank you dear ones.