Sparks

Jenny here.

Happy 4th of July!  I am at work tonight while Wil is watching movies at home with the dogs (our typical holidays are spent this way since I work evenings/holidays/weekends).  Yesterday, we went to the drive-in theater and saw a double feature of Inside Out and Jurassic World, with fireworks in between.  It was a gorgeous Texas night, 85 degree with a slight breeze…lawn chairs, corn dogs, popcorn, and people watching…so we had our holiday fun already (it’s summer in Texas...the people watching alone is entertainment, especially for Wil, who spent so much time in captivity last year).

Medically, we are status quo.  Wil did a 24-hour urine collection this week as another step in the whole “why is there microscopic blood in his urine” round of tests/procedures.  Results from that, and an upcoming CT scan plus Cystoscopy, will hopefully tell us more by the end of the month.  His neuropathy was actually a bit better this week.  We are not sure if this is due to his decreased dose in Prograf (YES!!!  You read right!  His oncologist is starting a super slow taper on his last immunosuppressant which means we are on alert  to watch more closely for GVHD, but also in hopes he will eventually be off it for good) or other med changes or the essential oils or just time.  Whatever the cause or combination of causes, he has been in a little less pain on his feet and it makes a huge difference for his spirits and mobility.  We won’t be back to the clinic until later in the month, so more news in a few weeks…

As I watched the fireworks start last night, I couldn’t help but look around. We were surrounded by crowds of people, everyone taking in the experience and lights together.  We had stood in the concession line for 30 minutes earlier for our snacks.  And I couldn’t have been MORE happy to be there, or more happy to be WAITING.  In a CROWD. With him.

Cue tears.

Sad tears mixed with the sheer joy.  I am not sure tears are ever JUST one feeling.  “Tears of joy,” I have discovered, always have an element of other feelings as well.  Whether it be relief, exhaustion, grief, fear, sadness.  Last July we were pre-transplant (nervous). Now we are at a movie (happy)!  Relationships are changed, moved on, some seem lost (grief).  I hope to never forget this day and have more of this time with him (hope and fear).

Looking at his face, sparks from the sky reflected on his smile…just 2 months ago we would have not put ourselves in any crowd, anywhere.  In my life of rushing, the common lesson learned is to embrace the WAIT and embrace the emotions.  To take in a big breath of germy air in and understand, at a deep level, how amazing it is to have an immune system and this day!

So as the fireworks began last night, I took in more than the lights through my blurry eyes.  Visual snapshots of this strange new world. Nothing has really changed, except the filters through which I now look out.

“Do you remember our first 4th of July?” I said.

16 years ago Wil and I, along with my roommate at the time, went to see a marching band show.  We had only been dating a few weeks.  As the sun set, the fireworks began and a few shells rained down over us. He asked me if he could hold my hand.  That night was the first time Wil put his arms around me, holding me tight to protect me from falling debris.  As the combustible light show fell through the sky, I...I was falling in love.  With him.

These days, sometimes I reach for his hand without asking, not just out of habit, but because I am also afraid he might literally fall while walking, from the neuropathy, or to reassure him we will be safe from the emotional debris that comes painfully close after all he has been through physically and psychologically the past 2 years.   I hold
it a little tighter and longer now to know, for real, that he is still here, right now…like if I don’t let go I’ll have him forever.  We are still walking this life together.  And there are still sparks.

If you haven’t seen Inside Out yet, do.  While I might be giving a little away here with my favorite scene from the movie, I do hope the concept, if you’ve been reading this blog, is nothing new.  The movie is a great reminder that all memories are many colors, that sadness is a gift that helps you find help and comfort, and that true happiness cannot exist in a vacuum and must allow for all feelings to be present to be real.  Sadness is a true gift and helpful.

Did you hear that?  For those of you who have weathered all the waves with us and not taken the easier route of forcing a bright side before dawn…thank you for acknowledging the power of darkness. We still have ups and downs in this healing process and still sometimes weep over the plans and our life B.C.

If you are reading this, and in your own journey of cancer or ANYTHING else (so all of us, right?), take heart in knowing there is nothing wrong with sadness, even when the course is coming out of the woods.  Take heart in fear, in disgust, in anger…they are there for a reason and just part of your brilliantly colored light show in the night, a multidimensional explosion…of being human.  If anyone tells you to be positive, to be happy, to find the gift, that everything happens for a reason, that you won’t be given more than you can handle…it matters not that it may eventually be truth...find someone who understands your NOW and how to wait with you and how to sit still with you through the struggle and ALL feelings, whatever order they
come in or look like…real joy will come about only through honoring the kaleidoscope, and not before.  Let THOSE kind of people hold you.

And know, without a doubt, that your deliberate wholeness will be found through the thick of it…in the amazingly deep, profound, and lovely shades you nurture and admire.

Much Love.

----------------------------

INSIDE OUT

[Riley is on the verge of tears after attempting to run away back to
Minnesota after feeling very homesick]
Riley: I... I know you don't want me to, but I miss home. I miss
Minnesota. You need me to be happy, but I want my old friend, and my
hockey team. I wanna go home. Please don't be mad.
[Riley's mother and father stare sadly at their daughter]
Mom: Oh, sweetie...
Dad: We’re not mad. You know what? I miss Minnesota too. I miss the
woods where we took hikes.
Mom: And the backyard where we used to play.
Dad: Spring Lake, where you used to skate.
[Riley breaks down in tears]
Dad: Come here.
[Riley, her mother, and her father all embrace in a group hug, consoling Riley]