Holding My Breath

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.

IMG_0932

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!  😉

 

 

Quietly Slipping Away

I’m going to need you to bear with me the next couple of weeks, dear friends.  I’m feeling particularly reflective these days and when that is combined with a heightened awareness of grief as we approach the year anniversary of Rudy’s death and burial, I could err on the side of over posting.  My brain is firing at warp speed and, as always, I’d like to somehow capture all the thoughts and feelings and not get totally lost in them but then again maybe I won’t have the energy to do the hard work of processing it all and I’ll go radio silent…it’s hard to know.  The vivid memories of Rudy this time last year are already haunting me and Rolf which makes me wonder how we’re going to get through this next week.  Awww Rudy, you are beyond missed.

I have a long list of questions for God when I see Him face to face.  I have a lot of questions about how this past year unfolded specifically.  Aside from the obvious trauma, this has been a very strange year.  For reasons beyond our control, many important, traditional events in our family’s annual calendar were cancelled…for example, you may recall that the Thomas fire back in December took out most of Christmas, more recently the major remodel at the Rescue Mission forced the cancelation of the 4th of July celebration for the homeless guests (which is by far our family’s favorite holiday at the SBRM) and just this past week our church decided to cancel Vacation Bible School for a variety of perfectly logical reasons.  On the one hand, it could be described as God’s grace to not have to face it all this first year without Rudy (because he was such a big presence in it all) but on the other hand, my disease is taking me faster than I want to go and for that reason I feel like I’m being deprived of the opportunity to fully engage one last time in the special traditions in which I take such great delight.  My body is changing and how I interact with my world is only going to look more and more different from here on out.  I kinda feel like I’m being deprived of a “victory lap” so to speak (aka Satan’s mockery).  Now since I’m pretty sure the world doesn’t revolve around me, I suspect the truth of the situation falls somewhere in between God’s grace and Satan’s mockery of me but the emotional ramifications remain the same…it makes me feel like I’m quietly slipping away behind this thick fog bank of loss & grief and crazy, random life circumstances.  I certainly continue to pray and hope that things plateau for me physically and life will stay unchanged for just a minute in the coming year but, if not….

In addition to preparing for Rudy’s 1 year anniversary and contemplating the meaning behind life’s crazy twists, I made the difficult decision to step back from leading worship at the SBRM graduations which means this Saturday will be the first graduation in 11 years where I haven’t led worship (actually, I think I did miss one graduation but it was so long ago I can’t remember why).  It’s painful to step back but it seems like the right time as my symptoms become more distracting.  I have considered it an incredible honor to share (through worship) in the sacred-ground celebrations of sobriety and freedom with dozens of heroic individuals who successfully completed their year long program over the years…and I will miss it…but I certainly am no less proud of the work of the SBRM staff and residents as I continue my support from the pew!  Yay Graduates!!  Yay God!!

Thank you again for the fun collection of Lightening McQueen cars and for your prayers leading up to next Wednesday.  We are planning a private day but feel surrounded by our loving community as represented by all of Rudy’s cars!!!  We are beyond blessed and don’t take any of your expressions of love for granted.  Thank you dear ones.  We love you too.

 

Discovering My Voice

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.

IMG_0869
The last of my summer travels ended in San Diego with my dear friends and former co-workers! 25 years may have passed since we worked together but the connections are just as tight! Love you all.
IMG_1078
I couldn’t have done the trip without these gals!
IMG_0867
The trip to SD also allowed me to personally send Max off on his Point Loma summer ministry team adventure…
IMG_0102
…he gets to tour for a month with a PL band leading worship at summer camps and churches in the southwest! So fun!

IMG_0101

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.  🙂

IMG_0845
Olivia captured a rare picture of me and Rolf at an outdoor concert at El Cap a couple of Saturdays ago…
IMG_0844
We LOVE portrait mode!! Ha Ha

 

Our Concrete Jungle Adventure

Ahhh, we made it home safely from our epic adventure in the city that never sleeps and are taking a few days to slowly find our footing again (well, me anyway).  🙂

Actually, the fun began for us the weekend BEFORE our flight to New York on June 18th.  Rolf and I drove up to Palo Alto on Friday the 15th to celebrate our niece who graduated from Stanford that weekend.  It was refreshing to spend the evening with good friends and a beautiful afternoon on campus with Rolf’s sister, brother-in-law and niece.  We returned home late Saturday in time to celebrate Father’s Day with the boys and later with Olivia when she returned home from a lacrosse tournament in San Diego!

IMG_0242
Yay Heather! Class of 2018!
IMG_0483
Olivia’s first summer lacrosse tournament in San Diego…Go Mission Lacrosse!
IMG_0238
Happy Father’s Day Rolf
IMG_0241
More Father’s Day fun

Then, we got up early Monday morning for our flight out of LAX to NEW YORK CITY!

IMG_0244
Thanks to our friends Rob and Susan, we enjoyed stress free car service to and from the airport in Los Angeles…and again to our hotel in Times Square!  Such a huge practical help!

This trip was made extra-special by the number of details arranged by friends that added to the fun the Dream Foundation planned…and, of course, there were a number of divine blessings too.  Bottom line?  An army of earthly and heavenly angels had our family’s back and the trip couldn’t have gone smoother!  🙂  Here’s more detail than anyone would ever want (Ha, Ha, Ha)…

IMG_0247
Saddled up and ready for some FUN…
IMG_0276
The first divine blessing came in the form of a flight delay (a delay I prayed for) during a layover in Indianapolis which allowed me to have a quick visit with two of my best high school friends. ‘Grateful to have friends that drop everything to meet me in an airport food court. Ha Ha 🙂 
IMG_0285
Due to our delay getting into Newark, we didn’t make it to bed until nearly 3am on Tuesday but everyone was still all smiles for our 6:30am arrival to the ABC studio in Times Square…
IMG_0297
Thanks to Shelley, we got VIP tickets to GMA!

IMG_0316

IMG_0320
Kevin Costner shaking Olivia’s hand…she got to tell him how much she liked “McFarland”. 🙂
IMG_0339
The audience handler singled out the boys (surprise, surprise) in his off camera schtick…
IMG_0333
Olivia and Amy Robach
IMG_0341
Ginger Zee…adorable.
IMG_0337
Michael Strahan was the sweetest.
IMG_0395
We left GMA and headed straight to Tiffany & Co on 5th Avenue for an appointment arranged by my friend Chelsea from the SB Tiffany & Co…

 

IMG_0140

IMG_0356
Outfitted with my Audrey Hepburn sunglasses and black dress,  we were ushered into a private shopping suite and served croissants and tea/coffee…we literally had breakfast at Tiffanys!
IMG_0355
So fun!

IMG_0359

IMG_0389
Thank you Chelsea for the fun surprise.
IMG_0431
Later that night we enjoyed “Wicked” -the first time for all of us…thank you Tami!!!…
IMG_0435
…and a late night trip to the top of the Rock after the show…
IMG_0449
A beautiful view of the city thanks to the Dream Foundation!
IMG_0454
Inside Rockefeller Center…album cover perhaps?

IMG_0468

Aaaaaand that concludes DAY ONE!!!  Ha Ha Ha

IMG_0475
On Day Two I met my favorite New Yorker…Kevin the ticket taker at the Empire State Building.  There was a small glitch with our tickets and we couldn’t get to the top but it was worth the walk just to meet Kevin…seriously!  🙂
IMG_0486
The kids set off on an excursion around town by themselves in search of this cool building that was the subject of a school project for Olivia this year…
IMG_0485 3
…$500 shoes…
IMG_0480
…and subway tile in an actual subway (with New York attitude)!
IMG_0494
The DF sent us to Aladdin that night…another excellent Broadway choice.
IMG_0496
We ended the day with a walk through Times Square…
IMG_0501
A stand-out even in a giant Times Square crowd.
IMG_0518
We braved the subway system with the scooter on Day 3 to go see the 9/11 memorial and museum…we spent two hours in the museum and still didn’t see everything. It was very well done but a little overwhelming after a couple of hours.

IMG_0523

IMG_0542

IMG_0543
A camouflaged World One Freedom Tower…

IMG_0544

IMG_0545
It was such a beautiful day!
IMG_0551
Manhattan
IMG_0555
The Hudson River
IMG_0550
The East River and Brooklyn Bridge
IMG_0609
Later that night Rolf took the kids to see Bruce on Broadway while I rested back at the hotel.
IMG_0608
A highlight for Rolf for sure!

IMG_0570

IMG_0604
Day 4 was spent with family as Rolf’s sister and her girls came down from Boston for the day…we walked along the High Line above Chelsea Market and spent the afternoon in Central Park.
IMG_0589
Cousin fun in Central Park

IMG_0590

IMG_0612
On our last day in the city, we fanned out and spread a little Rudy love in the Big Apple. He wouldn’t have liked the crowds or noise in New York City but he would have really loved the colorful, crazy people we met!
IMG_0615
We squeezed in one last show…the matinee of Phantom of the Opera…
IMG_0618
…and did a little shopping at an outdoor market. Well, Livy and I shopped while the boys hung out looking at their phones. 😉
IMG_0662
We extended our trip a couple of days to tour around Rolf’s hometown in New Jersey.
IMG_0647
We spent a few hours on the Jersey Shore…

IMG_0663

IMG_0671
…and enjoyed an evening with old, family friends and Oma (who just happened to be visiting friends in the northeast that week too!)
IMG_0685
Rolf worked here in high school…
IMG_0705
…ate here in high school…
IMG_0687
…and hung out in this pretty park!
IMG_0782
We got one last look at NYC from Jersey City the night before we flew home.

IMG_0746

IMG_0743
God was very gracious to me all week with amazing weather. I don’t tolerate heat and humidity well and we ended up enjoying mild temps in the high 60s and low 70s ALL WEEK! It was amazing and the cooler temps allowed me to thoroughly enjoy all the excursions we took…a HUGE blessing!

Rolf and I had the added blessing of connecting with friends from long ago that just happened to be in NYC for various reasons…such a small world!

So, how do I sum it all up?  Certainly the collective effort of this trip is deeply touching to me…I feel loved and surrounded and lifted up…not only by those who participated in the particulars of the trip but also by those who took care of things at home and lifted us up in prayer.  The trip itself was precious family time together.  I’m not sure we could have squeezed anything else into it. 🙂  Being in the city was invigorating but also exhausting.  I think it was perfect timing for me physically…my limitations in navigating the typical world were very apparent to us all.  I needed the boys’ help to get out of the sitting position most places and Rolf’s help getting off the toilet and in/out of the shower.  As the week wore on, I felt my speech and body maneuvering slower and it was stressful to battle the crowds all day, every day.  I’m hoping a few days in bed will help me bounce back a bit but regardless, it was worth all the effort to go.  I love my family…I love doing life with them…and I love them even more as we journey ALS together.  Thank you, Dream Foundation, for making this trip possible.  Thank you, dear friends, for all the “extras” that made this trip even more memorable.  Thank you, family, for rolling with the punches, making our ever-changing life together look effortless and normal and for making me laugh.  There is so much for which to be grateful.  #iamblessed

IMG_0660

IMG_0810
Thank you all!!
IMG_0815
There is much that inspires in a place so diverse, so big, so active!

Big Apple Dreams

IMG_0106
Last day of 10th grade!!!

Max and I picked up “10th grade Olivia” from school for the last time on Thursday which marked the official start of summer in the Geyling household!  Yay!!  Then, we welcomed Wilson home on Saturday morning after he successfully completing Air Assault School in Hawaii!  Woo Hoo!!  THEN, Wilson’s girlfriend came for a quick visit which led to a spontaneous swim party and a couple of late night living room movie nights!  Good Times!!  Summer is here.

IMG_0107
Way to go Wilson!
img_0120.jpg
Summertime Livin’ with friends!

In the midst of all that fun, we got a special visit from representatives of the Dream Foundation – a non profit, wish granting organization for terminally ill adults headquartered here in Santa Barbara.  My hospice case worker initiated the dream application a couple of months ago and thanks to the hard work of DFs staff and supporters, our family is being gifted a trip to New York City!  Rolf was in NYC on business nearly 12 years ago, I haven’t been in 30 years and the kids have never been…it’ll be an epic adventure for sure.  We’ll take in a couple of Broadway musicals, the boys will get to see U2 at Madison Square Garden, Olivia is excited to go to a live taping of Good Morning America, Rolf is working hard to secure tickets to fulfill his dream of seeing Bruce on Broadway and I’m looking forward to reenacting the iconic opening scene of “Breakfast At Tiffany’s” on 5th Avenue while humming Henry Mancini’s “Moon River”!  Ha Ha 😉  Mostly I’m excited to sit back and soak it all up…the sights, the sounds, the food, our kids’ reactions to the Big Apple and all the shared moments.

We recognize, maybe more than most, the impact this kind of experience can have on a family in our situation because we’ve lived it before.  You may recall that Rudy was granted a wish from the Make A Wish Foundation back in 2013…which I described here.

Not to sound boastful but we get it.

We know how to pace ourselves and maximize every moment all at the same time.

We know how important it is to make and store up lots of vivid memories.

We know it’s more than a vacation.

We know it’s a walk on sacred ground.

It feels quite strange to be going on another wish trip and I’m surprised by how sensitive or self-conscience I’m feeling about it…like with with Rudy, I wish we didn’t qualify…but, on the other hand, because we’re experienced wish receivers, we know what it takes to make something like this happen and we don’t take any of it for granted.  We are so grateful for the generous acts of love and compassion that have been extended to our family over the years by so many.  At the end of Rudy’s wish trip blog post, I expressed my hope to pay it forward in the future…I feel the same about this trip too.  Stay tuned for a fun recap in the coming weeks!  🙂

IMG_0114
‘So grateful to Alex and Mark from the Dream Foundation for their hard work and trip packet presentation.
IMG_0811
My hospice angels…case worker Tianna and counselor Ginny.
IMG_0121
From the looks of it, the kids would have been perfectly content with just the UGG blanket that we were given along with a basket of UGG/Teva/Sanuk walking shoes. Seriously, this blanket is sooooo soft!
IMG_0136
Thank you, in advance, Dream Foundation for what WE KNOW will be a fun and impactful experience for our whole family.
IMG_0153
I used Wilson and Kyla as practice models while learning how to use new photo features on my IPhone. 😉

Looking for Rainbows

Have you heard of the term “rainbow baby”?  It’s official definition is this…

A rainbow baby is a baby born shortly after the loss of a previous baby due to miscarriage, stillbirth, or death in infancy. This term is given to these special rainbow babies because a rainbow typically follows a storm, giving us hope of what’s to come.

…but I would extend that definition to the birth of a baby born after the loss of a child at any age.

I shared about rainbow babies before on Rudy’s Beat back in 2012.  It’s kind of shocking to read that post now and reflect on the number of kids that have passed since Katie, Josiah and Logan…we can now add Daisy, Gwendolyn, Moriah and Rudy to that list.  😦 And we’ve watched every one of these families go on to have their rainbow after the storm…some of the babies were planned and some were a surprise but in every case, it’s been an amazing joy to watch these families experience the birth of another child and the renewal that comes with it…although the memory of all our lost friends will never fade, watching their brothers and sisters arrive over the years, even from a distance, and sharing in the joy of their existence, even from a distance, has been a sweet breath of fresh air in the midst of so much loss and pain for so many.

It did cross my mind from time to time that given my age when I had Rudy, if anything ever happened to him, it would be highly unlikely that our family would experience the blessing of a rainbow baby.  I didn’t dwell on it but, I admit, it did make the thought of losing Rudy more threatening.  If we lost him, that would be it!  But then again, maybe our rainbow would come in the form of an adoption or maybe that breath of fresh air would come with grandchildren down the line.  (Ok, maybe I did dwell on it a bit!)  The point is, I was catching a vision for rainbows in the life of our family to come in a variety of ways.

Some good friends of ours were expecting their first baby last spring and looking ahead to their childcare options.  I felt compelled to offer my services…they needed the help and I thought it would be good for Rudy to be the “big guy” for a change and learn to care for others so the arrangement had the potential to be a “win for win” for all of us.  Rudy died 10 days after our new friend, Levi, was born.  Even in the days that followed Rudy’s passing, I felt strongly that I needed to honor my childcare commitment.  As I prayed about it, I wondered if little Levi might end up being a unique rainbow baby in my journey through grief and part of my healing process…seemed logical.   Then came ALS and it was clear that I had to let go of Levi too.

I think I’ve been looking for/longing for that darn rainbow ever since.  If ALS wasn’t in the picture, I’m certain I’d be able to identify my rainbow but options for that breath of fresh air, that sense of renewal, the hope of what’s to come seem really, really limited right now…figuratively AND literally!  I couldn’t have ever predicted, in all those times I thought about losing Rudy and fretted over what that would mean for our future/my future, that the storm would gain momentum after Rudy’s death, that I would have to ride it out for the rest of my life and…not see the rainbow once the storm ended.  It still boggles my mind.  I think it will boggle my mind until the day I die.  I’ll keep writing about it, though…I’ll come at it from all different angles…I’ll try to make sense of it because my mind is wired that way…but I guess my hope is that in the process of trying to do the impossible, I’ll land on some helpful insights that can be understood in this lifetime and will, even for a split second, be a breath of fresh air for a weary, storm-weathered soul.

IMG_7152
Rudy and Levi meeting for the first time.

 

IMG_7153
Already so eager to show him the ropes!
IMG_0281
A little Levi love for me last fall!

My friend Scott has been helping me transfer all the cassette tapes some friends and I recorded 25+ years ago to digital copies.  He emailed me another batch this morning that included a lullaby I wrote when my now almost 28 year old niece was born.  Seems kind of fitting to reintroduce it here with all this talk of babies…:)

Timeless Love of Christ (with Grace VanNortwick)

 

Simple Pleasures

It has been pretty quiet around here.  Wilson is still in Hawaii for Air Assault School and returns on Saturday.  He has successfully passed two out of three phases and says the training is “no joke” but is enjoying the challenge.  Max has picked up a few shifts at Kyle’s and is quite helpful to me during the day when he is home.  Olivia couldn’t be MORE ready for school to be over…poor girl just has to hang in there 3 more days!!!  It finally started to feel like summer this past weekend and I’m ready for our summer break to officially begin too.

We had our first family pool party of the season this weekend.  Rolf and Max jumped in to cool off after a day of plumbing and because I was on a two day break between infusions, I jumped in too and it felt wonderful!  The weightlessness is the best and the gentle, no-impact movements of my arms and legs in our warm pool water is so therapeutic.  It’s such a simple but deeply impactful pleasure.  I actually got lost in feelings of normalcy as I floated around in the pool hammock.  It all felt normal until it was time to get out.  I don’t have enough arm strength to hoist myself onto the pool edge and once I’m on the edge, I can’t get myself to a standing position.  So, I’ll have to limit my pool play to when Rolf or the big boys are home to help me.  Getting out of the pool is a bit of a humbling process, for sure, but I’m determined to not let that stop me from enjoying our pool this summer.  🙂  Yay Summer!!!

We are giving some thought to how we’d like to approach July 25th and honor Rudy on the anniversary of his passing.   Rolf and I have decided to keep the day itself pretty simple but would like to invite our friends and family to participate by honoring Rudy with one of his simple pleasures.  We invite anyone who wants to to send Rudy a Lightening McQueen car that we’ll place on his headstone track on the 25th.  We’re hoping to have a big pile to display which would have delighted Rudy to no end.  Oh, how he LOVED to play with his Lightening McQueen cars!  I also have a replenished supply of “Pay It Forward for Rudy” cards so if you’d like one/some to use on the 25th specifically, let me know how many you’d like and I’ll drop ’em in the mail to you.  We don’t necessarily want to make a big deal out of this first anniversary but we do want to be thoughtful in the ways we remember our boy.  Thank you for walking this road of grief with us and loving our family in it…we love you right back!

IMG_0095
Send us a Lightening McQueen car and we’ll send you a limited edition Rudy pen…in your choice of “Rudy Blue” or “Lightening McQueen Red”!
IMG_0097
In this past month of missing all the end of the school year fun with Rudy, I was especially tickled to get this photo from one of Rudy’s special ed teachers last week. She said she found it while cleaning out her classroom and it just might be my new favorite picture! Thanks “A A” 😉