Leaning in....

Have you ever heard the phrases, “Lean into the wind”, or Lean into the turn?” I hadn’t realized that “lean into….” had become a rather popular phrase until I recently did a Google search on it. The reason I did was because in our grief group we were told to “lean into our grief.” What exactly did they mean by that?

Here are some definitions and quotes I came across in my search-

Definition of "lean into...":

-be assertive, go aggressively and fearlessly, be proactive etc.

-go with it, don’t fight it or avoid it.

What would you want- If it were you?

At the time of Benji's transplant and soon after, we began talking about when we'd be able to let the donor's family know how extremely grateful we were for their gift and what a perfect match the lungs had been for Benji.

(In case you don't know or recall, the surgeon told us after transplant that the lungs were the perfect size for Benji's chest cavity- sometimes they're a little small and sometimes they have to be cut back because they're too large.  Benji's fit perfectly!  Additionally, one of Benji's bronchi was larger than the other and the new lungs were identical- they were also a perfect match! The surgeon said, "It was meant to be.")

We couldn't wait to tell the donors family about it, of course however, only if they wanted to hear from us.  It was our understanding that we'd have to wait at least 6 months before we attempt to communicate with the family; that was fine by me because I wanted to be able to wait till after I could give them examples of the things Benji could do with his new lungs that he couldn't do before. 

Secondary Losses

In my last blog I spoke about the void that Benji’s death has left, beyond losing him personally. The loss of other things in our lives connected with our loved ones are not things we often think of needing to grieve, but they are. We have learned these are called secondary losses. If someone loses a spouse it may mean they also lost a companion, a cook, a lover , a provider, a maintenance man, etc. These are all secondary losses. We have been encouraged to identify and name each of those losses and I have found it helpful to do so.

One of those for me is the loss of my “other life”.  Since 2004 Benji and I together really did live two separate lives.  At times the two lives intersected, but they were basically independent from each other.  When we were at the hospital (nearly always at Riley-up until the last 5 months of his life), we had a whole new community.  Aside from family, the majority of our time there we didn’t have connections with or see many people from home.  In fact, there were a couple times we were down there for several weeks (for routine tune-ups) that Allen and the boys weren’t even able to come down.  Benji wouldn’t see his school friends while there and we would often miss church for weeks on end without much contact with church people.  Of course, we did have visitors- during certain times more than other times- but the majority of the time we were alone in our other life.  

The End of the Story... Or is it?

7 ½  months…. that sounds like a long time doesn’t it?  It kind of is.  In fact, I can scarcely believe in about 2 months, it will have been a year since Benji and I took off for St. Louis, looking forward to the possibilities of what new lungs could mean for him. 

On the other hand, it seems like such a short time ago that we were in the midst of a time in our lives with such constant, intense emotions and complete dependence on God. When it ended so suddenly, it left me feeling deflated.  It left an additional void in my life, beyond the void that Benji’s death left.  

As I tried to think of a way to describe this feeling, I thought of how I’ve felt when I read a book or watched a movie that caused me to deeply invest my emotions and hopes in the outcome,  then suddenly it ended…. in a MUCH different way than I ever hoped or expected….  

The anti-climax.   What a disappointment and feeling of deflation…. of emptiness…….  I just wanted to rewind and write a different ending!  

This time, I wasn’t reading a book or watching a movie, I was living it.  No ability to rewind and change the outcome.  (I’m guessing that to a certain degree, the way some of you invested your prayers and emotions in Benji’s story left you feeling the same way.)

I hope you don’t think I’m crazy, but at times in the couple weeks following, I would have fleeting thoughts about the possibility of the doctors calling and saying Benji wasn’t dead after all; that though they thought he was, he actually wasn’t.  And in that same instant, reality would hit me and I would realize that especially days and weeks afterward, that was certainly not going to happen.  And then the finality of death would wash over me- again.  There was no changing it; the ending was written.  Or was it?

When we left for St. Louis we knew there would be challenges ahead, but they were certainly worth it for Benji to have some quality of life again outside of a hospital!  We also knew there was a slight risk for complications the first year, but they were so slight we really didn’t consider them.

   

 We CERTAINLY never considered the fact 

that Benji would never leave the hospital after transplant.   

And with all the miraculous circumstances that got us there and those perfect fitting lungs that were “meant to be” coming so quickly after arriving…. it was so obvious God still had a plan for Benji on this earth!  What a wonderful story of God’s work in our lives and after each miraculous occurrence or time we nearly lost Benji, only to have him recover again, I would tell Benji how God had a plan for him on this earth and that he would have such an amazing story to tell in future years…..  

We had such hopes for the outcome….

 The following is an excerpt from the January 16 Caringbridge journal entry:

  

“As I was listing the previous praises on FB, I was overwhelmed with gratitude at the incredible improvements we’ve already seen! Thank you Jesus! I was asking Benji tonight how different he thinks it will be going to Bible Camp this summer. This past summer especially, he so badly wanted to go to camp and I’m so glad God graciously allowed him to be home from the hospital, -just for that week. However, Benji’s horribly diseased lungs wouldn’t allow him to join in the fun and fully participate. If things continue with his new lungs, as they have been, (and we PRAY they do,) this year, camp should be entirely different! He will not have to do one treatment! He will not need to be on oxygen! No IV's! His legs and joints may still give him some issues, but his lungs should be just as healthy as everyone else’s.

And now, as I have been describing what this actually means, I can scarcely see through my tears as I am again overwhelmed at the possibilities that lay before Benji. (In fact, I cannot stop crying.) Oh thank you Jesus, thank you Jesus!! And again, thank you to the donor’s family who has made this a possibility for Benji! And to the surgeon, doctors and other medical staff who have the knowledge and skills to do this kind of thing!

I think I’m going to end with this tonight, hoping you will also experience the impact of the things I just described. Words cannot describe the gratitude we feel! And tonight, as you ask God for a clear report regarding rejection; please remember to express your gratitude to such a loving God who has so graciously allowed us to experience this!”

What a beautiful story I would have written…. one that would have left us feeling good in the end… that ended the way we hoped…Why would God write a script or book like he did?  Why in the world would he give us such amazing reasons to hope for a great outcome, only to let us down so deeply?  Why would he want us to suffer in this way?  I couldn’t answer these questions 7 ½ months ago, and I can’t answer them today.  From my perspective, the ending was so wrong and unfair…. a poorly written script. 

God has written other scripts like this.  In fact, one he wrote was especially personal to him.  This time it was he who suffered the loss of his Son.  But it didn’t happen by chance.  God wrote that script too.  He chose the anti-climax for his own story!   Many of the Jewish people had pinned their hopes in Jesus delivering them from the Romans.   Many believed him to actually be the Son of God as he claimed to be.  Yet, he had to suffer terribly and then he died!   

What was God thinking?  What a feeling of disappointment and emptiness.

But… the story wasn’t finished.  Though the people didn’t know it, there was a sequel coming.  And in it was an incredible story!  One of Jesus, after being dead three days, actually coming to life again!!!!  Wow!!!   

And the story is still not finished because God is writing a trilogy.  One that will include every one of us and where we have the opportunity to choose the ending.  The trilogy contains Jesus returning for us who choose to believe in him as our redeemer and Lord and then living in God’s presence for eternity.  You see, Jesus’ death on the cross was only a part of God’s overall story.  

And Benji’s death, and your death and my death or the death of a loved one, or any kind of suffering is only part of a much, much larger story.  We tend to live as if our life span is the extent of the picture, yet if we place our lives on a timeline of history, we aren’t even a speck.  And Benji’s story and my story and yours aren’t finished because the trilogy never ends; it is for eternity.  Benji’s part in the trilogy has already been determined, ours is yet to be written.  

I hope I haven’t left you with the impression that I have lived the past 7 ½ month with my head in the clouds and in a form of denial.  Knowing all of the above by no means removes the pain and loss of our experience.  It does however ease it.  It helps to fill that void, that feeling of emptiness at the anti-climax of this portion of our story, because we know the rest of the story will far surpass our hopes or expectations. 

I am so grateful our story isn’t over!  

(If you click on the audio player in the right sidebar you can 

listen to my sister Rose singing a song she wrote. She was 

inspired to write it after Benji had gotten so sick the first time 

and began his frequent hospitalizations. I think it fits so 

perfectly with this blog.)

HAVE or HAD?

  Last week I was again faced with something new; what do I say if someone asks me how many children I have?  What would you say?  My first thought was to say I HAD four sons, but one passed away so now I have only three.  It sounded strange to me (and to a certain extent it felt out of touch with reality) to say I HAVE four sons.  You may be ahead of me on this one, but it took a little bit for this to register with me.  It suddenly clicked a few days later that I had been thinking about that question in earthly terms, not taking into consideration that in reality, none of us are simply earthly beings, we are all eternal beings; our lives on earth are simply the first stages of the rest of our lives.  “Silly!  Of course I HAVE four sons!”  

   This was taken in St. Louis in 2006 when we initially took Benji there to get him listed for his lung transplant

 Yesterday I started reading a book called “One Minute After You Die”; he also talks about the fact that we are all eternal beings.  Based on what we choose to do with Jesus while we are on earth, the moment we die we will either go to a place more glorious than we could ever imagine, or we will face eternity in a place more horrifying than we could ever imagine.  We are so grateful Benji chose to be “inChrist” while on earth, which gave him the necessary passport to his eternal destination- heaven.  Benji, having gone to heaven sooner than us is in a way, no different from him having moved to another country.  If he had moved to another country, though not physically with us, he would of course still be alive.  Now, though not physically with us, he is alive in heaven.  He IS still my son; he just lives in a different place.  

 So, if you ask me how many children I have, I will tell you I HAVE four, one just lives in heaven.

And I am so grateful for 

ALL FOUR of our sons!

*If you don't already know and would like to know more about the story behind "inChrist", you can read about Benji's story at his Caringbridge site.  caringbridge.org/in/benji

Special Delivery

For my first post, I'm sharing something we received in the mail this week.  Both Allen's mother and father have passed away; Allen's mother when he was two and his father just a couple years ago. His sister said she was trying to read what Dad's thoughts might have been at the time of Benji's death and this is what she wrote.  These beautiful words brought tears of sadness, but also comfort and peace.

As I step out to meet the ship

In the mist of the morning’s dawn

I hear the whistle as it draws nearer

Someone special is coming home

“Special delivery”, I hear him say

As my Master tells us the news

“Special delivery my dear ones”

As he waves his hand to the ocean of blue

We stand at the edge of Jordan’s bank

Mom and I- in awe and wonder

The ship pulls in just ahead

And she will dock just over yonder

We stand there by Jesus’ side

Waiting with outstretched arms

The gates open wide and joy bells ring

As we welcome Benji home

Jesus is the first to take his hand

No fear or pain on Benji’s face

What a bright light of joy and love

Because he knows he’s won the race

Such a glad reunion- as we hold him close

And welcome him to our fold

His message to you, “Don’t grieve for long

For it is well, it is well with my soul.”