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…
My friend Bob was my xray tech during the test…
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!!!
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)!
We had our annual church meeting a few weeks ago and I was struck by a couple of things…1.) the fact that we saw the last “Annual Slide Show” with pictures of our Rudy in it (super sad!) and…2.) how much our community has been through this past year. Our pastor made the observation that as a result of the heavy losses in our congregation this year and the lingering trauma in our community as a whole from the month-long Thomas fire and tragic mudslides this past winter, there is a sense of desperation and a greater depth in our congregation’s worship of and expressed need for God. I would agree. I feel it personally…there is a certain level of desperation that is drawing me into deeper spiritual awareness, for sure!
That got me thinking about “desperation” and “inspiration” and how the two can go hand in hand. I’m sure we could brainstorm all kinds of examples of amazing things desperate people have been inspired to do throughout history but it’s not really about the “end result” for me…it’s about the process. It’s about the relationship between the two and how God is using my desperation to stir my soul, draw me to Himself and lead me to inspired action that, in turn, nourishes me…whether it’s time with loved ones, a legacy project, blog post, music or art, for example. The problem is desperation is a strong emotion that can easily overwhelm and immobilize & parceling out and following through on inspiration is hard work…it’s just a whole lot easier to wallow in self pity and binge watch Netflix in ones super comfy adjustable bed! So, my goal is to do the hard work, lean into the desperation just long enough to get to the deeper inspiration part and find joy in unpacking the treasure that follows. 🙂
In the meantime, this is going on too: I tried Hyperbaric Oxygen Therapy (HBOT) last week. A friend highly recommended it several weeks back and offered to pay for a few sessions so after some research, communication with my doctor and a call to the company who manufactures my implanted port, I finally made it to my first session. Based on what I’ve read, my expectation going into it is that the therapy could help boost my energy level. There are other potential benefits but I’m not sure how realistic they are in my situation. I liked it. It was comfortable and relaxing. The one challenge for me is getting in and out of the chamber. I need to determine if the energy I might gain is worth the huge effort it’d require to make it happen. We’ll see…I’ll keep you posted.
My leg brace arrived last week. It’s taking some getting used to but I’m adjusting. The good news is that I’m motivated to wear it because I can feel the support it gives me in my weakened ankle and knee AND it’s alleviating the tension in my hip quite a bit. The bad news is I came home and emptied out my closet of shoes which was sad. I like my shoes and I had some I was “saving” (for some stupid reason) and never got to wear!!!! I was sad and overwhelmed by another big bag of “stuff” cluttering up my garage when Olivia got inspired to post some of my discarded shoes on her Poshmark account and made 4 sales in the first 24 hours…which ended up injecting some fun into the whole crazy reality! Yay Olivia!!
In other news: DPHS Girls lacrosse made it to the playoffs and had their first play off win in program history last Wednesday. They advance to the semi-finals THIS TUESDAY at DP so if you are local, come cheer on the Lady Chargers with us!
I just happened to capture one of Olivia’s goals on video during Wednesday’s game (#keepaneyeonnumbernine) which is fun to share and though we’re super happy for Olivia’s success this season, what makes this whole season so special is watching the team and coaching staff as a whole. The girls are all strong players…the attackers, midfielders and defenders all play to their strengths and play well as a team…the coaches are competitive and positive and expect great things of the girls on AND off the field. To see our girl thrive in this season of personal loss and uncertainty is a huge blessing and I’m grateful for God’s continued grace.
Rolf and I were forced to address some garage issues in preparation for the boys’ return from college this weekend and that meant passing on Rudy’s durable medical equipment. 😦 So, so happy to find homes for his walker and wheelchair where they’ll get good use but it’s still hard to let go of Rudy’s things…
Olivia unearthed this little treasure from one of her social media accounts and it made us chuckle out loud…oh that boy!
I think I’ll just leave it at that for today. 🙂 Thank you dear ones for your ongoing prayers!
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!!!
This is a cropped copy of a larger image taken just a couple of minutes after Rudy was declared deceased. I had my reasons at the time when I asked Rolf to document what was going on in pictures. I knew the full version of this picture was an image I’d want to see…I knew it was a vantage point that would be meaningful to me but I didn’t fully understand how at the time.
It’s not like I needed a picture to insure I wouldn’t forget. The whole morning is seared into my memory…climbing up on the gurney and cradling Rudy with my hand spread across his chest desperately searching for a hint of movement…and holding his face in disbelief that he was actually gone…just like that (Wait. What just happened?). This picture captured that sacred, silent moment before the tragic reality of the situation began to sink in..this moment is the epicenter of my grief.
As painful as this picture is to look at, I’m compelled to frame it or put it into a locket because it is sacred and captures the last time I held our boy…as well as captures his sister’s hand holding on too (which I wasn’t aware of at the time). It has come to signify that moment when I was forced to entrust the care of our boy back to God and “where the rubber meets the road”, so to speak, in my faith journey. If there was ever a time when my faith needed to dig deep and find traction, it was in this moment. Sure, there were countless times in the life of Rudy where our faith was tested (as this blog can testify) but it all played out, even the darkest times, with Rudy by our side. From the moment this picture was taken, my active trust in God was going to be played out without Rudy by our family’s side and that seemed really foreign…still does.
Fast forward to today…
It hurt to walk through the special moments of Holy Week last week without Rudy…so much so that there was a big part of me that just wanted Easter to be over. And not because we were having to adjust to yet another holiday as a family of 5 but because of the nature of THIS holiday in particular…all the talk of Christ’s death and resurrection and our hope in Him while at the same time desperately missing Rudy was just too much. To be honest, it was a lot easier to embrace the miracle of Christ’s resurrection and bask in my hope in Him when Rudy was a living miracle…Not to say that the truth of Christ’s resurrection is any less real for me in the wake of Rudy’s death. I’m not struggling with a lack of faith and I’m not struggling with a lack of eternal hope. It’s just profoundly…different (I’ve been sitting here for 45 minutes trying to land on the right word and I’m at a loss, so, “different” it is) and even the most miraculous message of truth can fall flat in grief.
Our dear friend “Pastor Bob” (who spoke at Rudy’s memorial @ 26:50) shared about our family’s story in his Easter sermon titled “Our Living Hope” (Click here for the audio of his sermon if you’re interested @ 15:50). Although I’m blessed by his affirmation and personal encouragement, I really appreciated the heart of his message from 1 Peter 1:3-9. A secondary passage he referenced in 1 Corinthians 15 spoke to me too:
17 And if Christ has not been raised, then your faith is useless and you are still guilty of your sins.18 In that case, all who have died believing in Christ are lost!19 And if our hope in Christ is only for this life, we are more to be pitied than anyone in the world.
Verse 19 jumped out at me in particular.I’m not quite sure why except that the word “pitied” was intriguing to me and then Bob went on to say in his sermon that “the whole point of ‘the living hope’ (as referenced in 1 Peter 1:3 NIV) is that it is not confined to this life because Jesus himself was not confined to this life.”. I like that and the take away of it all for me is this: I amnot (you are not, we are not, Rudy is not) to be pitied because my hope is not confined to this life and neither am I which is made possible only by the sacrifice and resurrection of Jesus Christ. This is a powerful reflection for me today, it lessens the sting of everything right now…a little bit…and makes me look at the picture above differently too.
“O death, where is your victory? O death, where is your sting?” 1 Corinthians 15:55
These moments helped lessen the sting of last week a bit too:
Happy Belated Easter from us to you!
Full scripture references:
1 Peter 1:3-9 (NIV)
Praise to God for a Living Hope
3 Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead,4 and into an inheritance that can never perish, spoil or fade. This inheritance is kept in heaven for you,5 who through faith are shielded by God’s power until the coming of the salvation that is ready to be revealed in the last time.6 In all this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials.7 These have come so that the proven genuineness of your faith—of greater worth than gold, which perishes even though refined by fire—may result in praise, glory and honor when Jesus Christ is revealed.8 Though you have not seen him, you love him; and even though you do not see him now, you believe in him and are filled with an inexpressible and glorious joy,9 for you are receiving the end result of your faith, the salvation of your souls.
1 Corinthians 15 (NLT)
The Resurrection of Christ
15 Let me now remind you, dear brothers and sisters,[a] of the Good News I preached to you before. You welcomed it then, and you still stand firm in it.2 It is this Good News that saves you if you continue to believe the message I told you—unless, of course, you believed something that was never true in the first place.[b]
3 I passed on to you what was most important and what had also been passed on to me. Christ died for our sins, just as the Scriptures said.4 He was buried, and he was raised from the dead on the third day, just as the Scriptures said.5 He was seen by Peter[c] and then by the Twelve.6 After that, he was seen by more than 500 of his followers[d] at one time, most of whom are still alive, though some have died.7 Then he was seen by James and later by all the apostles.8 Last of all, as though I had been born at the wrong time, I also saw him.9 For I am the least of all the apostles. In fact, I’m not even worthy to be called an apostle after the way I persecuted God’s church.
10 But whatever I am now, it is all because God poured out his special favor on me—and not without results. For I have worked harder than any of the other apostles; yet it was not I but God who was working through me by his grace.11 So it makes no difference whether I preach or they preach, for we all preach the same message you have already believed.
The Resurrection of the Dead
12 But tell me this—since we preach that Christ rose from the dead, why are some of you saying there will be no resurrection of the dead?13 For if there is no resurrection of the dead, then Christ has not been raised either.14 And if Christ has not been raised, then all our preaching is useless, and your faith is useless.15 And we apostles would all be lying about God—for we have said that God raised Christ from the grave. But that can’t be true if there is no resurrection of the dead.16 And if there is no resurrection of the dead, then Christ has not been raised.17 And if Christ has not been raised, then your faith is useless and you are still guilty of your sins.18 In that case, all who have died believing in Christ are lost!19 And if our hope in Christ is only for this life, we are more to be pitied than anyone in the world.
20 But in fact, Christ has been raised from the dead. He is the first of a great harvest of all who have died.
21 So you see, just as death came into the world through a man, now the resurrection from the dead has begun through another man.22 Just as everyone dies because we all belong to Adam, everyone who belongs to Christ will be given new life.23 But there is an order to this resurrection: Christ was raised as the first of the harvest; then all who belong to Christ will be raised when he comes back.
24 After that the end will come, when he will turn the Kingdom over to God the Father, having destroyed every ruler and authority and power.25 For Christ must reign until he humbles all his enemies beneath his feet.26 And the last enemy to be destroyed is death.27 For the Scriptures say, “God has put all things under his authority.”[e] (Of course, when it says “all things are under his authority,” that does not include God himself, who gave Christ his authority.)28 Then, when all things are under his authority, the Son will put himself under God’s authority, so that God, who gave his Son authority over all things, will be utterly supreme over everything everywhere.
29 If the dead will not be raised, what point is there in people being baptized for those who are dead? Why do it unless the dead will someday rise again?
30 And why should we ourselves risk our lives hour by hour?31 For I swear, dear brothers and sisters, that I face death daily. This is as certain as my pride in what Christ Jesus our Lord has done in you.32 And what value was there in fighting wild beasts—those people of Ephesus[f]—if there will be no resurrection from the dead? And if there is no resurrection, “Let’s feast and drink, for tomorrow we die!”[g]33 Don’t be fooled by those who say such things, for “bad company corrupts good character.”34 Think carefully about what is right, and stop sinning. For to your shame I say that some of you don’t know God at all.
The Resurrection Body
35 But someone may ask, “How will the dead be raised? What kind of bodies will they have?”36 What a foolish question! When you put a seed into the ground, it doesn’t grow into a plant unless it dies first.37 And what you put in the ground is not the plant that will grow, but only a bare seed of wheat or whatever you are planting.38 Then God gives it the new body he wants it to have. A different plant grows from each kind of seed.39 Similarly there are different kinds of flesh—one kind for humans, another for animals, another for birds, and another for fish.
40 There are also bodies in the heavens and bodies on the earth. The glory of the heavenly bodies is different from the glory of the earthly bodies.41 The sun has one kind of glory, while the moon and stars each have another kind. And even the stars differ from each other in their glory.
42 It is the same way with the resurrection of the dead. Our earthly bodies are planted in the ground when we die, but they will be raised to live forever.43 Our bodies are buried in brokenness, but they will be raised in glory. They are buried in weakness, but they will be raised in strength.44 They are buried as natural human bodies, but they will be raised as spiritual bodies. For just as there are natural bodies, there are also spiritual bodies.
45 The Scriptures tell us, “The first man, Adam, became a living person.”[h] But the last Adam—that is, Christ—is a life-giving Spirit.46 What comes first is the natural body, then the spiritual body comes later.47 Adam, the first man, was made from the dust of the earth, while Christ, the second man, came from heaven.48 Earthly people are like the earthly man, and heavenly people are like the heavenly man.49 Just as we are now like the earthly man, we will someday be like[i] the heavenly man.
50 What I am saying, dear brothers and sisters, is that our physical bodies cannot inherit the Kingdom of God. These dying bodies cannot inherit what will last forever.
51 But let me reveal to you a wonderful secret. We will not all die, but we will all be transformed!52 It will happen in a moment, in the blink of an eye, when the last trumpet is blown. For when the trumpet sounds, those who have died will be raised to live forever. And we who are living will also be transformed.53 For our dying bodies must be transformed into bodies that will never die; our mortal bodies must be transformed into immortal bodies.
54 Then, when our dying bodies have been transformed into bodies that will never die,[j] this Scripture will be fulfilled:
“Death is swallowed up in victory.[k] 55 O death, where is your victory? O death, where is your sting?[l]”
56 For sin is the sting that results in death, and the law gives sin its power.57 But thank God! He gives us victory over sin and death through our Lord Jesus Christ.
58 So, my dear brothers and sisters, be strong and immovable. Always work enthusiastically for the Lord, for you know that nothing you do for the Lord is ever useless.
I learned recently that the original Hebrew root of “Be Still” means to “Let Go” transforming Psalm 46:10 to “Let go and know that I am God”…and then somewhere on the internet I read that “Psalm 46:10 encourages us to reflect on what God can do in the face of what we are unable to do.”…I like this. I’ve been reflecting on this mini-paradigm shift of one of the most powerfully understated passages in scripture the past few weeks and I like where it’s leading me:
“Be still and know that I am God.” Psalm 46:10
I have stamped this verse on jewelry, printed it on bookmarks and I’ve sung more than a few songs about it over the years and it’s meaning has always centered on a physical stillness for me…be still, be quiet, be calm…but I don’t think I’ve gotten it quite right, especially if it’s root meaning is to “let go”, because life has taught me that the process of letting go varies greatly. Sometimes letting go is clothed in quiet acts of obedience as “be still” might imply but more often than not, my “letting go” is loud. In recent months my letting go has been clothed in deep, guttural groans of grief but in other seasons of my life it has been clothed in shouts of liberating victory!! Sometimes it’s wrapped in such promise and sometimes the process is strangled by fear. Either way, though, what we are left with is the great I Am! No matter how threatening the storm that is swirling around me may be and no matter what the process of letting go looks like, what God is commanding me to do in this verse is to trust Him…a faith derived from a steady and deep understanding of who I know Him to be. Let Go and know that I AM GOD! Sometimes it’s more empowering for me if I switch it up a bit…Know that I am God and LET GO…let go…let go of trying to figure it all out…let go of the worry or shame or guilt or pain…let go of the manmade safety nets…let go of the faith in things that fall short and disappoint…let go of the fear of uncertainty…let go.
And as it pertains to me specifically in the context of facing my mortality, the process of letting go doesn’t mean to give up or resign myself to a death sentence…no way! Just the opposite! The call to trust God and let go is to let go of all the things that might be hindering me from fully embracing the life I am living RIGHT NOW and the promises of God that continue to be true for me…no matter how threatening the storm is!
Although there is a physical calmness in our household (for which I’m grateful), what I’m striving for is a continued spiritual serenity…an inner calm that creates space for life to be richly lived…for all the Geylings. 🙂 Will you join me in that prayer?