Follow by Email

Thursday, May 7, 2015

Something So Special and So Unique

I’ve always loved F. Scott Fitzgerald, even despite of—or perhaps because of—the darker veins of age and despair that his works are riddled with.

And while I was more than disappointed in Hollywood’s rendition of The Great Gatsby, I have a soft place in my heart for the 2008 film of The Curious Case of Benjamin Button.

My favorite part of the script—though the words never appear in Fitzgerald’s original short story—are spoken as Benjamin, played by Brad Pitt,  comforts Daisy, played by Cate Blanchett:

“You chose to do something so special and so unique that there was only a short window of time that you could do it.”

It’s funny the things that run through your head when the doctors tell you that your husband is dying.

And yet, as I listened to the physicians and nurses we have come to love tell us that the time had come to move Trevor to a hospice plan, I found my mind turning back to that scene with Benjamin and Dasiy.

“You chose to do something so special and so unique that there was only a short window of time that you could do it.”

I suppose you could say that I married Trevor knowing one day I would be here.

Though I’m not really sure any of us know much at 20-years-old.

We chose to live our lives as though his illness wasn’t a part of it, as though it would never come back.

And for a beautiful stretch of time it didn’t.

But sometimes there are things that are so special, so unique that they can only exist in a short window of time.

Today we made the decision to stop all intervention-based care.
No more infusion therapy treatments.
No more MRIs.
No more pills.
No more shots.

No more.

And even as I type those words, knowing they relate to hospitals and IV lines and pharmacies and stiff waiting room couches dotted with tattered magazines and so many other things I have come to hate, I still come back to finding myself wanting more.

More of this.
 And this
 And this
 And this
 And this
And this

 And, especially, of this.

But sometimes there are things that are so special and so unique that they can only exist for a short window of time.

A close friend asked me once if I ever regret my decision to marry this incredible man.

And the answer is no.

Of all the things that I believe,  I believe that we live this life to experience all that we can, on a crash course of progression that is insatiable until the very moment that our spirits leave our mortal shells and we are onto the next stage of being, of progress.  Life is a succession of lessons that must be lived to be understood.

My life with Trevor has moments that can be measured by every extreme—utter euphoria to the most intense pain I’ve ever known, and so much more in between.

How do you regret that adventure of discovery?

There is still more to come. More to learn.

We aren’t sure how long we have, weeks to six months…I don’t know.

There are some things that are so special and so unique that they can only exist for a short window of time.

In January when we took our first big plunge off this cliff I opened our house to everyone who wanted to see Trevor. Those doors are open again.  You are always welcome.

There are beds stashed in every corner for friends that come from far away, the fridge is always full—thanks to the incredible love of neighbors and friends. I hope this last part of our window will be filled with love and laughter and music and energy.  If you want to come shoot me a text, 435-512-3705, or just stop by.

I haven’t shared the video below yet, but now seems a more appropriate time than ever. I have been astounded at the outpouring of honor so many have written about for Trevor.

If you have a chance, see this blog, and this one, and this one and this one.

A great band, KitFox, found our blog, and using so many of our words, they created this gorgeous song for us. I carry the lyrics and the tune around in my head every day…give it a listen. It seems like the perfect way to end this post, by thinking about how endings never really have to end.
linderman from London Photography on Vimeo.


Debbie said...

Chelsi, it has been such a blessing to know the too of you! I love you both, and I will drop everything whenever you need me. Love you guys!

Mel Eppich said...

Sending love .......through tears.

Di said...

And again I sit here without words, but needing to say something. To let you know that I love you and my heart is breaking that you and Trevor ever had to think about these decisions, much less make them. My thoughts are with you. Everyone has a regret or two in life, but there's nothing to regret in creating a beautiful loving family with a great guy, even if he does have a shitty disease. You have both always been and continue to be a great example to me of love, friendship and faith.

Taffy said...

I'm writing this with a lump in my throat and tears threatening to spill.
Thank you for sharing your lovely family with us. I hate that you have to go through this trial. On the other side of my hurt for you, I know the Spirit will be there for you, touching you, giving comfort, and letting you know how many prayers are specifically for you and your family.
You are truly blessed. We love you and will keep you in our prayers.
The Lovells

Momma Bear said...

We must have some common friends on Facebook so I ran into your blog. I have the blessed and wondrous job of doing exactly what you are doing for your sweetheart. I look back on a fairy tale romance and wonderful life together and I can honestly say my favorite part of our life together was the time I helped him die. My heart goes to you. The rough stuff is for later. Right now is for pure love, sweet words, true service and a closeness you too will never have had otherwise. I love you, my sister in grief.