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!

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

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)…

Aaaaaand that concludes DAY ONE!!!  Ha Ha Ha

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!

Rolf and I had the added blessing of connecting with friends from long ago that just happened to be in NYC too…Annemette is a friend from Up With People, lives in Holland and just happened to be in NYC on business!

Tara, Scott and John are also former UWP cast mates and we had a mini-reunion at Moe’s!

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

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!

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.

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.

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.  😉

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

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)!

I think I’m going to add “procrastination” to the list of ALS symptoms I’m experiencing.  I’m not a procrastinator typically so my lack of motivation to act on things is surprising to me…I blame ALS.  😉

I got a prescription back in December for an orthotic to help with my drop-foot issue caused by the weakness in my left leg.  I procrastinated getting the prescription filled in large part because it required me to go to the same office I took Rudy for his custom foot braces.  Although there is some comfort in my familiarity with the medical/therapeutic community here in town, the thought of going to Nobbe Orthopedics was super sad and a little humiliating.  It’s still so surreal to me that I’m even on this journey and how, more so as times goes on, it overlaps with Rudy’s.  These are steps I don’t want to take…physically or figuratively.  Oh, and missing Rudy doesn’t seem to be getting easier either.

Well, yesterday I took the physical step forward to Nobbe’s to get fitted for my new orthotic.  It was hard…I cried…but it also gave Rolf and me the opportunity to thank Ralph and his team for their tender care of Rudy and that always feels good.  The reality is, I can’t deny my felt need for the orthotic anymore.  My legs are getting weaker and it’s getting harder to lift my left leg high enough to insure I don’t trip on my lifeless, droopy left toes.

Many have asked lately how I’m doing physically.  I described my symptoms as “annoying” a few months ago…they are more debilitating now and I’m feeling more and more fatigue which is discouraging.  😦  My symptoms started in my legs and speech and I’d say these are the areas most affected still just to a greater degree.  I’m losing control of the muscles in my mouth/throat and it’s taking me longer to speak/eat/etc.  Next up on my “Things I Don’t Want To Do” list?  A swallow test scheduled for May 14th.

Luckily there’s been lots of distracting fun lately too…

Sadly, Olivia’s regular LAX season ends this week but it sure has been a thrilling season for her and the team…and those of us who have gotten to watch!  The MOHD Squad is definitely going to go through withdrawal once the DPHS season is officially over.  Good thing we have the boys’ return for summer (in LESS than TWO weeks!!!) to look forward to.  🙂

Love you friends!  Thank you for your ongoing prayers!!!