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.