Max and I picked up “10th grade Olivia” from school for the last time on Thursday which marked the official start of summer in the Geyling household! Yay!! Then, we welcomed Wilson home on Saturday morning after he successfully completing Air Assault School in Hawaii! Woo Hoo!! THEN, Wilson’s girlfriend came for a quick visit which led to a spontaneous swim party and a couple of late night living room movie nights! Good Times!!Summer is here.
In the midst of all that fun, we got a special visit from representatives of the Dream Foundation – a non profit, wish granting organization for terminally ill adults headquartered here in Santa Barbara. My hospice case worker initiated the dream application a couple of months ago and thanks to the hard work of DFs staff and supporters, our family is being gifted a trip to New York City! Rolf was in NYC on business nearly 12 years ago, I haven’t been in 30 years and the kids have never been…it’ll be an epic adventure for sure. We’ll take in a couple of Broadway musicals, the boys will get to see U2 at Madison Square Garden, Olivia is excited to go to a live taping of Good Morning America, Rolf is working hard to secure tickets to fulfill his dream of seeing Bruce on Broadway and I’m looking forward to reenacting the iconic opening scene of “Breakfast At Tiffany’s” on 5th Avenue while humming Henry Mancini’s “Moon River”! Ha Ha 😉 Mostly I’m excited to sit back and soak it all up…the sights, the sounds, the food, our kids’ reactions to the Big Apple and all the shared moments.
We recognize, maybe more than most, the impact this kind of experience can have on a family in our situation because we’ve lived it before. You may recall that Rudy was granted a wish from the Make A Wish Foundation back in 2013…which I described here.
Not to sound boastful but we get it.
We know how to pace ourselves and maximize every moment all at the same time.
We know how important it is to make and store up lots of vivid memories.
We know it’s more than a vacation.
We know it’s a walk on sacred ground.
It feels quite strange to be going on another wish trip and I’m surprised by how sensitive or self-conscience I’m feeling about it…like with with Rudy, I wish we didn’t qualify…but, on the other hand, because we’re experienced wish receivers, we know what it takes to make something like this happen and we don’t take any of it for granted. We are so grateful for the generous acts of love and compassion that have been extended to our family over the years by so many. At the end of Rudy’s wish trip blog post, I expressed my hope to pay it forward in the future…I feel the same about this trip too. Stay tuned for a fun recap in the coming weeks! 🙂
Have you heard of the term “rainbow baby”? It’s official definition is this…
A rainbow baby is a baby born shortly after the loss of a previous baby due to miscarriage, stillbirth, or death in infancy. This term is given to these special rainbow babies because a rainbow typically follows a storm, giving us hope of what’s to come.
…but I would extend that definition to the birth of a baby born after the loss of a child at any age.
I shared about rainbow babies before on Rudy’s Beat back in 2012. It’s kind of shocking to read that post now and reflect on the number of kids that have passed since Katie, Josiah and Logan…we can now add Daisy, Gwendolyn, Moriah and Rudy to that list. 😦 And we’ve watched every one of these families go on to have their rainbow after the storm…some of the babies were planned and some were a surprise but in every case, it’s been an amazing joy to watch these families experience the birth of another child and the renewal that comes with it…although the memory of all our lost friends will never fade, watching their brothers and sisters arrive over the years, even from a distance, and sharing in the joy of their existence, even from a distance, has been a sweet breath of fresh air in the midst of so much loss and pain for so many.
It did cross my mind from time to time that given my age when I had Rudy, if anything ever happened to him, it would be highly unlikely that our family would experience the blessing of a rainbow baby. I didn’t dwell on it but, I admit, it did make the thought of losing Rudy more threatening. If we lost him, that would be it! But then again, maybe our rainbow would come in the form of an adoption or maybe that breath of fresh air would come with grandchildren down the line. (Ok, maybe I did dwell on it a bit!) The point is, I was catching a vision for rainbows in the life of our family to come in a variety of ways.
Some good friends of ours were expecting their first baby last spring and looking ahead to their childcare options. I felt compelled to offer my services…they needed the help and I thought it would be good for Rudy to be the “big guy” for a change and learn to care for others so the arrangement had the potential to be a “win for win” for all of us. Rudy died 10 days after our new friend, Levi, was born. Even in the days that followed Rudy’s passing, I felt strongly that I needed to honor my childcare commitment. As I prayed about it, I wondered if little Levi might end up being a unique rainbow baby in my journey through grief and part of my healing process…seemed logical. Then came ALS and it was clear that I had to let go of Levi too.
I think I’ve been looking for/longing for that darn rainbow ever since. If ALS wasn’t in the picture, I’m certain I’d be able to identify my rainbow but options for that breath of fresh air, that sense of renewal, the hope of what’s to come seem really, really limited right now…figuratively AND literally! I couldn’t have ever predicted, in all those times I thought about losing Rudy and fretted over what that would mean for our future/my future, that the storm would gain momentum after Rudy’s death, that I would have to ride it out for the rest of my life and…not see the rainbow once the storm ended. It still boggles my mind. I think it will boggle my mind until the day I die. I’ll keep writing about it, though…I’ll come at it from all different angles…I’ll try to make sense of it because my mind is wired that way…but I guess my hope is that in the process of trying to do the impossible, I’ll land on some helpful insights that can be understood in this lifetime and will, even for a split second, be a breath of fresh air for a weary, storm-weathered soul.
My friend Scott has been helping me transfer all the cassette tapes some friends and I recorded 25+ years ago to digital copies. He emailed me another batch this morning that included a lullaby I wrote when my now almost 28 year old niece was born. Seems kind of fitting to reintroduce it here with all this talk of babies…:)
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.
It’s hard to believe that we are less than 5 weeks away from Holy Week which means we are well into Lent already. I love that the Christian calendar has “seasons” of preparation…the Advent Season to prepare for Christmas and the Lenten Season to prepare for Easter. As I grow older, I appreciate more and more the discipline of setting time aside to prepare for and anticipate the beauty of these bookend celebrations in the life of Christ…taking time to prepare makes them so much richer.
BUT as has been the case with ALL the holidays that have come and gone so far this first year without Rudy, Surprise! Surprise!, Lent feels different this time around too. A week or so before Lent began, Rolf and Olivia were discussing what they were going to “give up” until Easter (as is tradition) when I blurted out “I’ve given up enough this year. I’m going to pass.”…I said it in jest, initially, but the thoughts behind the words lingered which led me to reflect on it a bit.
The truth is, my sassy remark is exactly where my heart is…I do feel I’ve been in a looooong season of being forced to give up quite a bit…not only Rudy and a daily life as our family knew it but also my own physical abilities in recent months and things I love to do and certain dreams for my future. Granted, these are not things I willingly set aside for the purpose of focusing on and drawing nearer to God (which is the purpose of fasting from something meaningful during Lent) but the result has been the same nonetheless…to a comforting extreme.
The thing that strikes me the most in the snapshot of my life today is that as my world has gotten smaller and smaller over the past 7 months, God’s presence has gotten bigger. One of the primary purposes of both the Advent and Lenten Seasons is to make room for God in our full, cluttered lives and I’ve experienced over and over again that He will fill whatever space we allow Him to occupy…and given what I’ve experienced the last several years with Rudy and in the last several months mired in my own disease, there is great comfort in knowing that God is big enough to continue to fill the empty spaces left by my shrinking world.
I shared about my journey at a Westmont Chapel several years back and how at every significant crossroads in my life, I was led down a path that seemed to narrow my world and my impact on the world compared to what I planned when I graduated from college…it sure isn’t lost on me how the events that unfolded just weeks after Rudy passed away are a continuation of that same journey. I remember saying to God at some point during Rudy’s life “How much smaller can my world get?”. Are you kidding me? It feels like such a foolish question now! What a strange journey this is…but it is proving itself consistent in many ways and God has been consistently present in it all…filling spaces and bringing life to hardened, dead places of the heart along the way. Thankfully the reflections I shared that day at Westmont still ring true for me today, especially this prayer:
My prayer is that you recognize God’s grace in your life and experience the power within it…providing us hope in all circumstances, blanketing us with peace in all circumstances, enabling us to love one another in all circumstance, bringing purpose to all circumstances and allowing, at times, for heartache and joy to coexist in difficult circumstances.
My friend Emily sent me this amazing book of quotes she compiled over the last year organized in 40 daily readings to be read over Lent…this is her 9th book! (What a gift…thank you Emily! ) If you are a person who participates in the Lenten tradition, consider this from Emily’s forward:
“Ruth Haley Barton says, ‘unfortunately, most people reduce the Lenten season to the question, “What are you giving up for Lent?”. The real question of Lent is, “How will I return to God with all my heart?”.’ Along those lines, my friend Susanne talked about Lent in this way ‘it is not about becoming lost in feelings of brokenness but about cleansing the palate so that we can taste life more fully.'”
Now, that is rich! I love that and I look forward to exploring that some more in the weeks ahead. Blessed Lenten Season Everyone!
We received the authorization paperwork we’ve been waiting for in the mail yesterday. PTL! It’s a relief to finally have it but it does feel a little anti-climatic…particularly, I think, because UCLA still can’t see us until November 9th.
Unfortunately, the momentum we initially felt with Cedars Sinai has faded too. They needed to review my MRI images and medical notes before they’d set an appointment… we’re waiting to hear back from them. Rolf and I would still like to go to Cedars as the more input we can get at this point, the better but it doesn’t look like we’ll be heading to the hills anytime soon. It’s disappointing.
So, we sit and wait. We’re good at that. It’s unfortunate this step in the journey has taken so long and it’s unfortunate Rolf and I are left feeling wiped out by the process but we’re positioned, now, to move forward. On a practical level, I guess our prayers are shifting from the acquisition of the authorization to a smooth 2nd opinion process, quick answers and OPTIONS! It would really be nice to have some options. 🙂