My Faith > My Fear

We took Wilson back to APU on Monday.  He is actually coming home again this weekend so it didn’t feel like the “official” send off but it is the first indicator that summer is winding down fast.  Olivia starts her junior year at DPHS next Wednesday and Max returns to PLNU three days later.  We took advantage of us ALL being together on Saturday and made a quick stop at Rudy’s former school to sit on the “Rudy Buddy Bench” a bit and leave behind a Lightening McQueen car in his memory (he would be going into 4th grade and turning 10 this fall).

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Rudy’s Buddy Bench at Mountainview School
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Reunited Roomies!

We also took a few minutes to think about this coming year and come up with a word or short phrase to focus and inspire us…and since I’m all about visual reminders I made everybody stamp their word/phrase on a washer to hang on a key chain or turn into a bracelet/necklace.  Ha Ha!  The family picked some good ones… “grow”, “faith”, “hold on tight” and “all my hope”.  My choice?  A mantra I’ve been repeating over and over to myself for a few months now…”My faith is greater than my fear”  (but I shortened it to “My faith > My fear”).

I don’t know how often a typical person thinks about death but I’ve actually thought about death A LOT in my lifetime…certainly in the last decade as we were confronted with the very real threat of death in our household but I thought about death a good deal as a child too.  My Grammie Fink made me these embroidered wall hangings when I was little and I remember praying the prayers every night at bedtime and every morning when I woke up.  I was very much aware of death as a child but I was also very much aware of heaven and had a sincere hope of heaven which seemed to quelch any fear I might have had of death as a child.

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Not fearing death is an amazing gift…especially when you’re actually facing death but it doesn’t mean this process I’m in isn’t without fear.  I may not fear death but I do fear the process of dying…especially by way of ALS.  This is a torturous disease and I haven’t even hit the really tough stuff yet but as I start to feel limitations due to lack of strength in my arms/hands  (i.e. not being able to lift a plate of food into our microwave or undo a button), I realize I’m staring down some pretty scary realities and its terrifying.  In addition to the physical stuff, I’m also noticing greater frustration and irritability and that scares me too.  I don’t want to lose myself in this process.  I want to feel the wide range feelings but not wound my family in the process.  I don’t want to add to the suffering by being grumpy and unhappy.

When I think about hardship in life, it’s easy for me to get fixated on life since Rudy arrived but a friend I’ve had for 30 years wrote me last week and reminded me of some significant “seasons of suffering” as a young adult, young wife and young mom predating Rudy for sure.  In her reflection, she went on to write “you perfected the art of ministering out of your pain, your struggles, your heartaches. Trish you may not know how rare that is”.  Besides being a very generous thing to say, my friend hit on something helpful.  Somewhere along the way I learned that, though it can be excruciating, there is rich, intrinsic value in embracing suffering and fear and doing the hard work of processing through it (as opposed to stuffing it or numbing it or running away from it).  In retrospect, it not only helped me put life into perspective and highlighted my need for God but it also served to shape who I am at my core…btw, if others were ministered to in the midst of it, well, that was God’s work for sure ;).

I guess what I’m trying to say is as fearful as I am in facing the growing impact of ALS on me and my family, it is how my life is unfolding and I want to live it…I want to glean all that is good internally and eternally and not allow the fear in the experience to control my life.  I think it is important to add that I absolutely believe in “eternal glory” as described in 2 Corinthians 4:16-18 and my childhood hope in heaven is still secure today but it is hard for me to truly immerse my mind in it because I’m not there yet…I’m still slogging it out in the muddy trenches of pain and heartbreak…I can take great delight in the glimpses of heaven I see in nature and in the love that surrounds me but they are still just glimpses.  This is where faith comes in and though it may be reduced to some schlocky Christian slogan, “My Faith > My Fear” is a lifeline mantra for me as I make the daily choice to not be overcome by my fear…especially since Christ already did the hard work of overcoming for me.  😉

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2 Corinthians 4:16-18

If you have the time and interest, I highly recommend this podcast .  It’s a meaty conversation with Kate Bowler (Duke professor, author, historian) who is processing suffering on a level that I can really relate to and inspires me.  Here’s a link to her NYTimes article from 2016 as well.

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!

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

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

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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)…

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Saddled up and ready for some FUN…
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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 🙂 
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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…
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Thanks to Shelley, we got VIP tickets to GMA!

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Kevin Costner shaking Olivia’s hand…she got to tell him how much she liked “McFarland”. 🙂
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The audience handler singled out the boys (surprise, surprise) in his off camera schtick…
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Olivia and Amy Robach
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Ginger Zee…adorable.
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Michael Strahan was the sweetest.
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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…

 

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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!
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So fun!

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

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Aaaaaand that concludes DAY ONE!!!  Ha Ha Ha

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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!  🙂
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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…
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…$500 shoes…
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…and subway tile in an actual subway (with New York attitude)!
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The DF sent us to Aladdin that night…another excellent Broadway choice.
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We ended the day with a walk through Times Square…
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A stand-out even in a giant Times Square crowd.
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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.

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A camouflaged World One Freedom Tower…

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

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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.
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Cousin fun in Central Park

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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!
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We squeezed in one last show…the matinee of Phantom of the Opera…
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…and did a little shopping at an outdoor market. Well, Livy and I shopped while the boys hung out looking at their phones. 😉
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We extended our trip a couple of days to tour around Rolf’s hometown in New Jersey.
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We spent a few hours on the Jersey Shore…

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

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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

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

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!