Big Apple Dreams

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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.

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Way to go Wilson!
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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!  🙂

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‘So grateful to Alex and Mark from the Dream Foundation for their hard work and trip packet presentation.
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My hospice angels…case worker Tianna and counselor Ginny.
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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!
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Thank you, in advance, Dream Foundation for what WE KNOW will be a fun and impactful experience for our whole family.
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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.

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Rudy and Levi meeting for the first time.

 

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Already so eager to show him the ropes!
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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!

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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”!
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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” 😉

 

 

This Time Last Year

It’s May 25th today.  It not only marks 10 months since Rudy died, it’s also the start of the long Memorial Day Weekend which means the house has emptied out.  Oma flew back home on Wednesday after her weeklong visit, Wilson left yesterday for Air Assault School in Hawaii, Max left on the train later in the day for Point Loma and Olivia left this morning with her youth group to meet up with Max at Point Loma for an annual youth conference.  Everybody is off doing great, much-anticipated things and that’s super fun.

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Fun with Oma!

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Sending Wilson off!

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I’m not sure if it’s because we’re getting closer to the 1 year anniversary of Rudy’s passing or not but I’m starting to get preoccupied with “this time last year” memories.  Up until now, my missing of Rudy (especially on holidays) has been fairly general with quick flashes of specific moments…missing his presence mostly and being flooded with a wide range of memories from all his birthdays or many Christmases or the various Easter scavenger hunts he participated in.  In the past couple of weeks, though, I’ve kinda been haunted by memories of last year specifically.  I suppose part of that is due to the fact that how I’ve spent my time this spring is dramatically different without Rudy here…I’ve missed all the end-of-the-school-year activities with Rudy like the Special Olympics Spring Track Meet, the school open house where he showed us all his fun projects, the bowling trip to Zodo’s with his special ed classmates, our annual teacher appreciation dinner, all the field trips and parties, etc.  Oh, I’ve missed it all and the people with whom I did it all.

The memories of this weekend last year are particularly vivid…it was so full…Rolf was working on a bathroom remodel so Rudy and I busied ourselves with a trip to the grand opening of the downtown Kyle’s Kitchen and then went to a friend’s baby dedication and, of course, we spent Sunday watching the Indianapolis 500 which was Rudy’s very favorite.  I can remember random details about the weekend, what he was wearing and the toys he insisted carrying around with him.  My mind is definitely shifting toward a more specific focus as it relates to memories of Rudy and I suspect that focus will become even sharper as we approach July 25th.  Ooooo, tough days ahead.

This Memorial Day Weekend is also a bit of a de ja vu when it comes to house projects.  You may remember that Rolf demolished and rebuilt half of our primary bathroom over the long weekend last year.

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Rolf and Rudy working hard in 2017

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He got as far as the sink, custom countertop and vanity but had to stop there as we were getting ready to host family and friends for Max’s graduation and needed a working bathroom.  The plan was to finish the whole bathroom remodel when the house emptied out again during the summer…well, the project has gone untouched since.  Rolf kind of lost his remodel mojo and I haven’t had the mental energy to tolerate the upheaval either.  However, it’s time to get it done and Rolf is going to resume demolition tomorrow.  Interesting to note, the major project delay is turning out to be fortunate timing for us as we will be doing modifications necessary for me down the line that we wouldn’t have done originally and the benefit of that isn’t lost on me and Rolf.  I’ve always been grateful for Rolf and his excellent thought, planning and execution of projects on behalf of our family over the years and that is especially true of this bathroom project.  The alternative modifications aren’t fun details to think through but he’s doing all the thinking for us and making it happen.  Thanks Rolfi.

Speaking of “this time last year”, this is what Rudy was doing on May 25, 2017…a duet with his sister.

Good job Rudy.

 

Another Reality Check

I had my swallow test at the hospital yesterday.  It was one of those “to dos” that I wasn’t motivated to do.  I find the ongoing tests and evaluations in this journey distressing because I go into them knowing they’ll highlight the progression of the disease without offering a cure or real solution…and that’s just plain depressing.  As wonderful as my team of medical professionals is, the nature of the consults are bubble bursters in my ongoing effort to remain optimistic and see the glass as half full.  🙂

The information gathered from swallow tests specifically helps to determine when a feeding tube will be necessary.  Ugh!  When I was first diagnosed in September, I knew enough about ALS to know feeding tubes and breathing tubes are part of the ALS journey but, to be honest, my gut feeling about how I wanted to approach this disease at that time was to do it naturally…to let it take it’s course naturally…and not intervene.  Well, now I’m confused because when I envisioned having to decide whether or not I’d get a feeding tube, I pictured being bed ridden and having poor quality of life…why prolong that scenario?  That certainly isn’t the case now and the factors in deciding to get a feeding tube aren’t so black and white.  The decision to get a feeding tube is not just based on whether or not the mechanics work but also on the amount of effort it takes to eat.  Although I can still chew and swallow, it is taking me longer and longer to eat.  I really have to focus on chewing and swallowing and eventually the effort to do so will be too much.  I honestly didn’t think I’d be engaged in discussions about feeding tubes this early on in the process.  Some suggest getting the feeding tube sooner rather than later to get used to it before you’re dependent on it.  I’m not there yet.  I’m still not sure how I feel about it.  My speech pathologist said I’ll know when I’m ready and I’m counting on that.  Ongoing prayers for ALS to be completely lifted from me are greatly appreciated but, in the meantime, prayers for a supernatural ability to continue eating naturally and discernment in the process of the disease as a whole are coveted too.

As much as I hated to get the swallow test done yesterday, there were a couple of silver linings…

  1. My friend Bob was my xray tech during the test…

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2. And look how Rudy showed up!!!  My hummingbird earring was captured in the xray video…perfectly perched front and center keeping an eye on things.  🙂  I love that.  Hi Rudy!

My next reality check will be a lung function test with the pulmonologist next week but after that, we’ll get a break from any BIG discussions until my next appointment with the neurologist next month.  In the meantime, we’ll have some fun with Oma who arrives today for a weeklong visit.  Thank you for the Mother’s Day love and encouraging notes/comments/messages and thank you for persevering in prayer with us!!!!  How very grateful I am!!!

Identity Crisis

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The sounds of celebration continue to ring after the DP girls varsity lacrosse team won their first division championship in program history on Friday night in Los Angeles.  The girls are thrilled and we share in their excitement…what a fun achievement.

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Olivia and her amazing coach!
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The Essig and Geyling crew…big brother fans ROCK!!!

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It was such a fun way to start the weekend…a weekend I anticipated would be difficult and complicated.  Of course, Mother’s Day is an opportunity to celebrate Rolf’s and my dear moms (Happy Mother’s Day with much love Oma and G’ma Jo!!!) but there is an undeniable dread to this year’s Mother’s Day for sure.

I spent some time this week googling topics like “Facing Mother’s Day after the loss of a child” and read a handful of articles and, honestly, none of the insights I read resonated with me.  For some grieving moms, Mother’s Day accentuates feelings of guilt over not being able to spare their sick child from death or fear that they’ll no longer feel like their child’s mom.  I’m not struggling with these concerns.  I think what is surprising to me in my grief journey is the fluidity of the experience.  The best way to explain it is the difference between having a “broken heart” versus a “breaking heart”.  My heart hasn’t reached a maximum level of heartbreak.  It is still breaking.  I am a mother of four children.  I gave birth to four babies and one of those babies no longer exists.  That’s a hard reality to grasp…no matter how much time passes.  It’s hard to face the day without Rudy…no matter how much time passes.  The grief is an open wound.

In addition, my whole identity as a mother has shifted and is dramatically changing as each day passes.  Last year, I was the mother of 4 children…able to care for their varied needs.  This year, I not only fall into the category of a bereaved mother but am also a terminally ill mother dependent on my children for daily basic needs.  Talk about a paradigm shift!  I don’t know.  Maybe Mother’s Day, for me, creates a bit of an identity crisis.  Maybe the pain lies in not being the kind of mom I’ve relished in for the past 21 years.  Maybe the pain lies in not having the capacity to be for my family what I’ve been before this point in time.  If my grief over losing a child is an open wound, my disease is salt in that wound.

So, how do I navigate Mother’s Day?  One breath at a time.  This year it is, for me,  a celebration of the four special days in my life when I became a mom.  It’s a celebration of the four lives God entrusted to me and Rolf.  It’s the grateful acknowledgment of the abundance of God’s grace that has blanketed our family…through so many changing seasons of our past and the changing seasons to come.  I guess what I’m learning this year is that the special holidays that pepper the calendar with significance and tradition won’t always be happy celebrations but are no less rich and meaningful.  Life experience whether joyful or tragic serves to deepen and shape us altering our approach to life but that’s not necessarily a bad thing…just, at times, profoundly different.

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Thank you God for the gift of Wilson!
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Thank you God for the gift of Max!
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Thank you God for the gift of Olivia!
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Thank you God for the gift of Rudy!

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Championship Bound

The DP Lady Laxers did it again!  They pulled out a win in the semi-finals against Culver City and are heading to the championship game in Glendale THIS Friday!  It was a thrilling game made especially fun by a big group of friends who showed up to cheer the girls on.

I’ve been saying all season what a fun distraction Olivia’s lacrosse season has been this year and I’m grateful the fun will continue for a couple more days.  😉

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(Thank you Greg Lawler for all the great action shots!)

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Cheering section!
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Yay for big brothers and friends!!!

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The fun has certainly been multiplied x 2 with the boys home for summer!  Rolf pulled two long days of driving down south and back last weekend to pick up the boys and their stuff.  The MOHD Squad is so happy to have them both home for a few weeks.  Yay Summer (but not yet for Olivia)!IMG_1623

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Wilson heading off to his summer job with Rudy’s old lunchbox. 😉
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Another Greg Lawler masterpiece!