A Night To Remember

To say that last night may have shaved a few months off my life would not be an exaggeration but OH. WAS. IT. WORTH. IT!!!  Not only was it DP GLAX’s last home game of the regular season AND Senior Night AND Olivia’s 100th Varsity Goal but it also included a nail-biter of a game that went into double overtime with friendly local rivals San Marcos!!  Oh my gosh.  SO FUN!!!!

This is a story better told in pictures and, lucky for us, Greg Lawler captured all the action!

7B1A5396

7B1A5626San Marcos played a really strong game from the start and the SM defense targeted Olivia most of the game 🙂 …

…but she was able to score 3 times and this is the celebratory stick click after goal #100!

7B1A5408

7B1A5457

7B1A5488

We’re not bitter or anything but Greg captured proof of a bad crease violation call that cost Brooke a key goal!  Look at her amazing foot placement (white cleats) outside the blue line  ! !  😉  Ha

7B1A5770-2

7B1A5771-2

Celebrating Sydney’s double OT, sudden death, game winning goooooooooooooooooal!

7B1A5804

IMG_3357

 

IMG_3363

7B1A5895

7B1A5855

IMG_3363

IMG_3289
Celebrating with friends

IMG_3360

7B1A5947

7B1A5955

The boys were close at heart as evidenced in the family text thread after the game!!!

IMG_3361

IMG_3362

 

My heart is full and I share in Olivia’s Insta-gratitude…

IMG_3359

7B1A5748

The girls have one more big game against Thatcher before play-offs.  Watching Livy and her team play is the highlight of my weekly routine right now…oh how I hate to see the regular season end…may they go far in the play-offs!

A Good Friday Experience

Ok, I know I’m over posting this week but I was really moved by the Good Friday service we went to last night and I wanted to record it here for future reference.  The service was personally significant because everyone in my family participated in it but me…Rolf was asked to share a reflection on a passage from Isaiah, Olivia sang and the boys were in charge of the “hammer” and bell percussion.  It wasn’t hard for me to feel a little left out at first (I’m finding that it isn’t hard to let go of things I no longer have the energy to do but it is difficult to no longer feel useful…especially in the areas where I had legitimate skill) but then my heart responded to the invitation to engage in what was happening and I was all in.  🙂  I know I’m going to want to reflect on it some more so I’m including my favorite parts below…you’re welcome to join me.  The videos aren’t much to look at so I recommend you find a comfy place to sit, dim the lights, close your eyes and soak it in…

IMG_3244

IMG_3245

IMG_3246

The heaviness and sadness of Christ’s crucifixion continues today on this dark Saturday of the Christian calendar but the celebration of the resurrection is just hours away!!!  May the weight of all the sad and difficult things in life be lifted for us all as we get swept up in the joy and hope of Easter Sunday…and may we bask in a holy weightlessness for a long, long season to come!

Suffering

Wilson is getting a lot of blog press this week!   😉  He is two weeks away from graduating so there will be more fun to report soon but this is a packed season for him both literally and emotionally as he turns the page on this very special chapter in his life at APU and transitions to the next.

Thanks to technology, we got to tune into a livestream of Wilson’s last chapel on campus and his worship team led the students in one of my favorite hymns.  How special!  Wilson’s prayer after the song ministered to me specifically when he prayed “may we be reminded of the visceral reality of the crucifixion”.  More on that in a minute but here is the hymn and prayer filmed from the comforts of home…;)

I led worship at our church on Palm Sunday and got a little weepy missing Rudy as the children paraded around the sanctuary with their palm fronds…

IMG_6093
Palm Sunday 2017

Through my tears, I shared an insight that came to light for me the day before while reading the gospel accounts of Jesus’ entry into Jerusalem (what we commemorate on Palm Sunday).  I always considered Jesus’ suffering beginning in the garden of Gethsemane right before He was arrested when he asked God to take away what was to come and cried tears of blood…such a vivid image of his anguish.  When I read Luke’s account, however, it’s clear that Jesus was heartbroken even before entering the city days earlier.  He knew what was coming and wept for Jerusalem.  What a sad and lonely few days that must have been for Jesus.

Although I’ve spent lots of time thinking about it,  I’ve never really been able to identify with Christ’s suffering.  I don’t know why…maybe it’s because of my Protestant upbringing where we can sometimes rush past the sorrow of Good Friday to indulge in the much more fun truths of Easter morning…or maybe it’s just how I’m wired but because I have the benefit of knowing Christ’s amazing victory, the depth of His suffering is hard for me to grasp and I think that’s okay…maybe the practical take away and value of pondering the Passion is not that I identify with Christ’s suffering but rather that I know that Christ is able to identify with my suffering…particularly comforting to me now.  So, for me, today, to be reminded “of the visceral reality of the crucifixion” is to be reminded that my God, my humble Savior, the One who conquered the consequences of sin for me understands what it means to suffer and therefore understands my deepest heart cries.  Thank you Jesus!  Thank you for your empathetic love in the here and now and for the gift of eternal life to come…your journey of suffering gives me both!!!

In other news:

Olivia is TWO goals away from reaching her 100th varsity goal…we’re hoping she’ll reach this LAX milestone at Tuesday’s home game against San Marcos.  If you’re local, you’re welcome to join us at DPs football field at 6pm.  No individual athlete reaches these kinds of milestones alone…it’s a reflection of the whole team working well together and it’s such a delight to watch these girls play!

IMG_3207
Thanks to Greg Lawler we got some fun shots of last Tuesday’s exciting win against Cate!
IMG_3208
Not a bad backdrop for lax!
IMG_3209
Brooke battling for Olivia’s draw.
IMG_3206
GOAL!!!

IMG_3210

IMG_3211

IMG_3200

IMG_3202
Cutest fans ever!
IMG_3204
Celebratory dinner at Kyles with Coach Sam!!

The MOHD Squad is excited to have the boys home this weekend.  ‘Wishing you a blessed Good Friday and Happy Easter dear ones!!!!

Life Lessons

IMG_5434

Our biggest boy turned 22 on Tuesday and he spent a good bit of his birthday preparing for and sharing at an FCA (Fellowship of Christian Athletes) meeting on his campus.  Luckily a friend taped it so we could enjoy it too.  I’m so grateful for Wilson’s willingness to share and glimpses like this into the kids’ lives whether it be them sharing from the heart or their musical performances or athletic competitions because it’s all evidence of life being fully lived – especially important to me right now.  Being able to process and finding healthy outlets are key to navigating life’s challenges and I’m grateful the kids are learning these important life lessons early.  We’re also learning that we process differently (i.e Olivia’s art, Rolf’s poems, Max’s songs, Wilson’s testimonies, my blog posts to name a few)….and that’s not only okay but is something I cherish because the variety makes the collective experience so much richer.

Wilson, thank you for your loving tribute, for the reminder of all the goodness in Psalm 23 and the challenge to “maximize God”…well done!

 

Speaking of healthy outlets, here’s some more…

IMG_3147
Fun with friends at Switchfoot!!!
IMG_3133
Max rockin’ the scoober in some fierce Ultimate Frisbee fun at Loma!

The DP Lady Laxers are on a fun winning streak as they near the end of their regular season…

IMG_7193

IMG_3145

IMG_3164

IMG_3163

IMG_3154
Celebrating at Kyles Kitchen

IMG_3171

IMG_7262

IMG_3173

 

IMG_3168
Cheered on by Gma Jo and Aunt Michelle!!

 

Rolf’s latest poem:

Put down the scalpel
Take off the apron
no need for the broom or the gloves

Too many words only bring more confusion 
The deepest mining won’t unearth a reason
Or uncover any satisfactory solution

The suggestions were all obvious
before they were made
None would be as welcome 
as some company in the helplessness
Another to simply marvel at the mess

Yearning to draw close enough to feel the fire’s warmth against my cheeks
Yet primed to leap back into darkness 
Your eyes know 
Your touch welcomes me where a grab will scare me off

Let me hear your small talk
Let me chuckle at your jokes
Not looking to be fixed
Just to be OK for a moment

No right thing to say
Words don’t bring the comfort
Of a companion in the quiet

Disclaimer #2

It’s time for another disclaimer.  The weakness in my arms and hands is making it harder to write and type and so I’m falling behind in my correspondence.  Rather than fret over it, let me say I read everything whether it be a card or comment or email or text or IM and I appreciate EVERY communication that comes my way.  So please, keep ’em coming and know that if my responses are delayed or curt or whittled down to an expressive emoji, it isn’t due to a lack of interest or gratitude…simply a matter of mechanics.  😉

It’s getting hard friends.  The growing number of limitations and the practical implications can be crazy-making.  After a super fun day with my dear friend from high school Annie & her daughter Sara visiting from Indianapolis and a fun win for the DP lady laxers, I had an unsettling choking incident at dinner on Tuesday night which wore me out and led to difficult transfers once we got home and a fitful night’s rest.  I admit the sequence of events left me feeling defeated & desperate.  Then, Rolf & I went to my neurology check-in the following day and we crossed paths with another patient farther along in the journey.  I looked at Rolf and cried tears of gratitude for where I am and panic about where I’m headed all at the same time.  Up, down, up, down…the roller coaster is real and it’s a constant challenge to live in the moment and not lose sight of all the goodness in my life…so much that is good!!!  Lessons in perspective regarding the physical, emotional and spiritual experience in this journey are reiterated over and over…with increasing depth and meaning as time goes on.

IMG_3143

Shortly after my diagnosis a year and a half ago, I mentioned how I felt God was telling me that my ALS journey was going to be just as much (if not more) a spiritual one as a physical one.  How very true that is turning out to be.  Ironically, it is taking me being stripped of everything…systematically…little by little to show me how integrated AND how uniquely separate my spiritual journey is to/from my physical existence.  ‘Sounds kind of mystical and I’m sorry about that because I don’t want to lose you.  I think what I’m trying to say is my faith experience isn’t about “being spiritual” but rather recognizing that I am spiritual, aligning myself with what God is doing all around me and choosing to spend as much time on my spiritual needs as I do on my physical needs…making the day to day not only purposeful but full of life…especially now.  As a Christian, I believe that God put this all in motion, Christ reconciled me to God in relationship and the Holy Spirit exists to empower and guide.  I have such a greater appreciation for the triune as time goes on…a multi-layered expression of love in a multi-layered life experience…especially now.

IMG_3083
Harley and her hooman!
IMG_3024
The California wildflowers are in full bloom after all the rain we’ve gotten…

IMG_3057

IMG_3050

IMG_2975
I love this combination of poppies and lupine…
IMG_3087
…reminds me of my favorite Rudy school art project!!

IMG_3079

IMG_3098

Fake It ’til you Make It…

…is a helpful life hack at times.  Not that I condone being “fake” in general but there are times when it is helpful to buckle down and imitate confidence until our imitation begins to generate the real deal.  😉  On some levels, I think I’ve been living out this mantra for the past couple of years…especially in the months leading up to my ALS diagnosis when I knew something was “off” but figured it would most certainly get better in time so I kind of “faked” it (or at best “downplayed” it) waiting for the upswing.  Even since my diagnosis, I’ve been able to downplay the debilitating aspects of this disease in public and confidently interact with others regardless of how I was feeling on the inside.  I am, however, crossing that threshold…I can no longer “fake” it.  No matter how hard I try to keep functioning, there is a point in the day when my body just won’t move anymore.  No matter how deep I dig to will myself to keep my mouth moving in a conversation, there comes that moment when my mouth can no longer form the words.  My body has a mind of it’s own.  It’s surreal and I feel like I’m living a scene out of the 50s cult classic “Invasion of the Body Snatchers” but it IS happening.

This has been made clear to me the past couple of weeks as we’ve had a full calendar of events requiring me to interact with lots of groups of people.  “Being present” isn’t something I want to stop doing but I do feel like I need to start wearing a disclaimer around my neck…

“I may not be able to converse like I used to or express all that I’d like to say to you, I may even stop talking mid-sentence, but I’m here…I’m taking you in…I love that we’re sharing this moment…when you give me a hug, I’m hugging you back…when you tell me ‘I love you’, I’m loving you too.”  

I have a voice generating device that will help me communicate needs and wants as time goes on but I’m not quite sure yet how effective it will be, especially in group settings.  We’ll see.  The point is my days of  “faking it” are long gone and the “hospital gown” that is my life is not only untied at this point but flapping wide open with each gust of wind that seems to expose a new reality in this disease’s progression.  Part of me wants to insulate myself and not confront the humiliation of uncontrolled bodily function but thankfully there’s a bigger part of me that could care less…so I’ll be out and about as long as I possibly can, flapping gown and all, you’ve been warned.  😉

Here are just some of my recent outings:

IMG_2712
Celebrating our Global Leadership Connection scholarship winner. 😉
IMG_2817
A very special outing to the Ritz-Carlton with our good friend Tami. 🙂
IMG_2850
Extra fun with Max on his 20th Birthday!
grad BH
Grad dinner #1 with the Bethel House ladies!
grad men
Grad dinner #2 with the men!
IMG_2857
A strong show of support at Olivia’s lax game last week!
cccn
Church women’s craft and fellowship night!
IMG_2883
Sharing in the joy of Coach Sam and hubby’s little bundle at the Lax Team Shower! P.S. Rolf and I placed 1st and 2nd in the “draw a baby on top of your head” game!!! I’ll let you guess which one of us won the highest honor!!! Ha Ha
IMG_2890
I just love these girls!
IMG_2897
Soaking up the worship at the SBRM graduation with my former singing partner Darlene and Olivia! So good!!
IMG_2906
Church fundraiser with Oma!

Although I haven’t felt the need for a hired care giver yet, I have grown increasingly dependent on Rolf and Olivia and I am beyond blessed by their innate ability to (seemingly) effortlessly care for me…especially Olivia.  I ask her to do things for me that no 16 year old should have to do but I ask her because she is more than capable and because I genuinely prefer the way she does things…i.e. she puts my hair up in the best high ponies or french braids and there is an awful lot of hugging and high-fiving that goes on during transfers on and off the toilet.  There is no fuss or drama with this girl and I couldn’t be more proud of her many exceptional qualities!  Her options for the future seem endless to me.  So proud of you little girl!!

IMG_2900

As always, I sure do appreciate your prayers…I feel guilty that our friendship is so focused on me and my needs at this point but know my mind is flooded with thoughts of hundreds of people every day and I do pray as I feel led but if you want to send me specific prayer needs, I’ll do my best  to add them to the list. 😉

Love and more love!