Rolf, Olivia, Harley and I ended July 25th cuddled in bed and fell asleep watching “Cars” the movie.  🙂  Thursday July 26th started off with an early wake up call for us all as Olivia headed off to volunteer at a local kids camp and Rolf & I headed to my appt with the neurologist.  Because of a scheduling delay, I haven’t had a neurology consult since March so I was bracing myself for a tough reality check as we discussed my progression of the past few months.  I’ve noticed increased weakness in my legs (especially in my knees) and I’m beginning to notice weakness in my arms.  Dr. D confirmed both in her physical examination.  In addition, she confirmed my need for a wheelchair based, at this point, on my inability to lift my left leg against gravity (anti-gravity).  This led to a discussion about mobility.  One of the things I’m finding confusing in the management of this disease is the seemingly contradictory but equally passionate recommendations out there.  I’m told to conserve the limited number of neurons I have left by limiting how much I walk and exert myself while at the same time to keep walking…to walk as long as I can.  What?!  Dr. D confirmed both are true but it’s a delicate balance.  Conservation is key but maintaining mobility is also important especially in maintaining my ability to transfer from one surface to another.  The goal is to not push myself to the point of fatigue…I feel fatigued EVERY day (particularly at night)…another indicator that it’s time to manage my movement a little better.

I know the whole situation is out of my control but one of the things that makes these milestone moments in the progression of this disease so difficult for me is not wanting Rolf or the kids to ever think I’m not trying hard enough…as if my efforts could have any impact on whether or not I need a wheelchair.  I know it’s an irrational concern but I just want to scream “MY BODY MAY BE GIVING UP, BUT I’M NOT!!!!”.  Rolf expressed it well when he said that when we managed Rudy’s care, there was always hope of improvement in some areas and ultimately hope of getting him to another treatment option, for example, a heart transplant; with me, we’re in preservation mode…it’s a totally different mindset.  There were a lot of emotional realities we had to face yesterday on the heels of an already emotionally charged week.  I’m still feeling pretty wiped out today and praying for relief from the physical aches of grief…stinging eyes, neck and back pain, headache.

So what do we do now?  The ALS Association hooked us up with a loaner wheelchair to use for now.  I asked Dr. D if I could just get by with loaners and not bother getting my own…she said loaners are okay for now but as my needs change, it’ll be important for me to have a chair custom fit for my specific needs.  Makes sense.  So we begin that process that includes PT evaluations for the insurance company, etc.  In the meantime, Rolfi was johnny-on-the-spot, came home yesterday and already built me ramps giving me access outside our bedroom to the kitchen and outside our front door!    Grateful for that man.

Ironically, Olivia volunteered at a wheelchair camp this week (and made a quick appearance on our local news!  Ha Ha).  I’m proud of her for making the choice to be a part of this camp this week (we had hoped Rudy could attend this camp at some point but he wasn’t independent enough when he became age-eligible).  Her week was filled with long, fun days surrounded by great friends and being a special help to new camper friends!  I admire her strength and grace.

Wilson made it in from his extended field training and is back on base at Ft. Knox.  He honored Rudy on the 25th with a 12 mile, timed ruck that completed his formal summer training.  We can’t wait for his return next week and will soak up the last couple of weeks we’ll have with him before he starts his senior year at APU!!!

Max and the band are back in California and helping to staff a summer camp down south this week.  We catch glimpses of him on social media working hard and having fun!  He and his team have one more week of camp and then, he too, will be home for a couple of weeks before heading back to Point Loma.

Pursuing things we are passionate about is truly life-giving and I find it profound that all three big sibs were pursuing their passions individually this week while at the same time collectively honoring their little brother by living full.  Grateful for these kids of ours.

🙂

 

The MOHD Squad is grateful for the quiet day we shared…it included yummy food and a quiet afternoon at the cemetery.  We talked a little but mostly just sat quietly.

We received so many lovely texts and messages today but one I got from Katie’s mom stands out…she wrote, in part, “Wrapping you all in our love today and remembering how hard the ‘last first’ was…”.  Yes, there is truth in that.  As hard as the this past year has been and as sad as today is, it is our last “first” without Rudy…from here on out our memories of Rudy will be in a more distant past and that doesn’t feel good either.  So, we cling to the memories we have and the memories you all continue to share with us and recall them often so as not to feel so far away from this treasure of a boy we loved well in his lifetime and continue to love & honor in our day to day.  Thank you for helping us celebrate him with your CARS cars (I’m going to miss those daily Amazon deliveries!! Ha Ha) and for “Paying it Forward for Rudy” today.  We are grateful for your investment in his life through your hands on care, your friendship, your prayers, your support…and now in his legacy.  We are beyond humbled and, as always, forever grateful!

 

Rolf’s poem sums it up beautifully:

A whole year past                                                                                                                              But I’m back there in an instant
Growling like a bear
You giggle and set off on an escape you hope won’t succeed

This time last year we were enjoying our last full day with Rudy – a day Rolf eloquently captured in this post.  Today, I’m holed up in my bedroom with a window air conditioner because of rare extreme heat hitting Goleta this week and lying in my bed immobilized by legs that are fatigued and weak.  I feel trapped as tomorrow closes in and I find I’m holding my breath in between bouts of tears that spring without warning.  I want to run away…I want to escape.  The reality, though, is that there is no escape so I guess my physical reality represents the emotional reality of today.  The goal is to not get overwhelmed and to remember to breathe.

The SBRM graduation on Saturday was, once again, amazing.  I wish you could experience one.  The event really is beyond explanation…it’s a moment in time the memory of which, we pray, is seared into every graduate’s mind and heart because it is not only a vivid picture of their success and hope for the future but, more importantly, it is a vivid picture of God’s presence and the support of community going forward.  When life gets hard for the graduates, our prayer is they will have the strength and clarity of mind to use the tools they’ve been taught, to know they are not alone in the journey and reach out for a stabilizing hand.

This is my favorite moment in every graduation.  This is the moment when past graduates are invited to come to the altar and pray with the new graduates at the close of the ceremony.  Often there isn’t enough room for everybody and the crowd spills up the aisles!  It’s profound and humbling and powerful.  It’s authentic love and it impacts everyone in the room whether you’re in recovery or not.  I’m so grateful to God that this powerful celebration occurred in the days leading up to this sad, sad week.  How grateful I am to share in a celebration that has soul significance in the midst of such deep, personal heartbreak.  How very grateful I am for the community that surrounds our family and the hundreds of hands outstretched in our direction.  Thank you God!  Thank you, dear friends, for the texts, emails, notes, flowers, LMcQueen cars, food, for running errands, doing laundry, making the day to day function smoothly…for your ongoing outstretched hands both near and far.

Please pray for us specifically this afternoon.  I’m getting measured and fitted for a motorized wheelchair today.  Practically it’s a good thing but it is a tough pill to swallow.  If it’s true that the symptoms of ALS are exacerbated by stress and anxiety then I’m screwed!!!…(this week anyway).   The goal remains to not get overwhelmed and to remember to breathe!  😉

 

 

Well, it’s a HOT Monday in Goleta and we’re back to a normal weekly schedule after our trip to NYC and the 4th of July holiday week.  A big thanks to everyone who reached out to us on Friday and Saturday during the fire that broke out in our town.  I was actually down south when the Holiday Fire started on Friday night but Rolf and Olivia kept me updated via texts and phone calls.  The mandatory evacuation zone extended to a 1/2 mile from our home so R & O did end up packing a few suitcases full of pictures and important papers but never actually left the area.  It was a relatively small fire that was well contained within a day but, sadly, 20 structures (most of them homes) were lost.  It has been a tough year for our community.

To be honest, I’m starting the week off pretty overwhelmed.  I blame the heat because my perspective is definitely warped in extreme heat but I was kind of anticipating this would be a hard week even before the heatwave hit.  We’re back to the daily grind and that’s a BIG let down after our special family time away in NY and my weekend in San Diego with dear friends…both boys are gone now until the first week of August…and the looooooong, heartbreaking month of July is ahead of us.  I have a desk FULL of things I simply must sort through, bills to pay, medical stuff to follow up on and I can’t seem to muster up an ounce of motivation…my body is moving as slow as molasses.  At the end of our NY trip I wanted to get back to my bed and the comforts of my space at home while at the same time not wanting all the fun distraction of being away to end.  I still feel that way and just want to throw a toddler tantrum today because I want what I want…and what I want is, well, the impossible.

So, what’s next?  I think Rolf and I are gearing up and bracing ourselves for all the unknowns that are headed our way as we prepare for the year anniversary of Rudy’s death.  It’s hard to know what to expect…it’s hard to know how the next few weeks will unfold emotionally and how that will impact our day to day.  The awareness of our grief is certainly heightened and the unpredictability of grief continues which is maddening.  I must say, though, the plan to have you all send us LM cars to honor Rudy at his gravesite on the 25th was GENIUS because we have a nice collection so far and every delivery brings us great joy and delight!!!  🙂

On the ALS front, I’m continuing my infusions of Radicava every two weeks (2 weeks on, 2 weeks off).  My home health nurse who comes to access my port tells me that her other clients are eager to start the next round after their 2-week break because they notice a difference when they are on the Radicava.  I can’t say I’m noticing much of a difference but maybe I’m not as “in tune” with my body.  So, I’m still acting in faith that it’s working to my advantage.  Because of a delay in scheduling, I don’t see the neurologist until the end of this month.  I haven’t seen her since March so it will be interesting to hear how she thinks I’m doing.

I received a BIG box in the mail a couple of weeks ago.  It contained an insurance-approved speech generating device that my speech pathologist has been working to get me for a few months now.  In fact, when we got news the device was being shipped to me, he sent me an email that read “Congratulations on your new Tobii-Dynavox device…”.  It took me back a bit.  I realized that, yes, this is something to celebrate.  It’s a big deal that I have it and a real gift for sure.  I am grateful.  It’s just that it’s the start of another chapter in this ALS journey.  It’s a device that will speak for me when I can no longer speak for myself…it’s a device that will keep me connected to the outside world when I can no longer engage the outside world for myself…it’s a device with a learning curve and I need to start learning how to use it now.  That’s heavy and heartbreaking.

Just to give you a little sneak peek into my process…within weeks of my diagnosis, Rolf and I began researching the many options out there for voice banking…a process where you record hundreds of sounds, words and phrases to be used later with the speech generating device to make a computer generated voice that sounds like you.  I actually ended up deciding not to voice bank.  My voice was already beginning to sound slurred and I just didn’t feel like it was worth the effort.  If I made the wrong decision for my family, I apologize, but I feel okay with my choice.  I just didn’t want to hear a slurred version of myself chirping back at me every time I wanted to say something…adding insult to injury.  I mean, if I have a choice, I’d much rather program a cool Australian accent or sophisticated British accent to switch things up a bit.  🙂  I share this cautiously as I know for many voice banking is a real life line and I’m not typically that vain but it’s how I felt at the time and I’m trusting my instincts.  I get a few hours of training with a company rep that I’m trying to set up now so once I get some time with the technology, I’m sure I’ll grow in my motivation to interact with it…I’ve said it before but the journey of ALS requires a daily assessment of where I’m at and what needs to be adapted to make life doable.  Where the focus up until now has mostly been mobility, communication now shares the radar and life charges on.  I’ll keep you posted and let you know what voice I land on.  🙂