There is a crack in everything, that's how the light gets in. - Leonard Cohen

 “Soy or Skim? “ she asked.  And…  the tears came rolling out.  “I stopped at the coffee shop and couldn’t remember which one you liked, so I bought both.

(Silence. Gulp)

“What…do you have news!?!” she asks.

“No, nothing. Everything is the same. No news. Everyone’s fine. Oh my gosh… I’m fine, really. Oh, wow… um, skim please”.

All it took was one more sweet little gesture and my cup overflowed.  I needed the moment to release some tears and move forward again. It was an opening that I could feel coming but I couldn’t find a convenient place or time. As a mother, a teacher and a wife, I feel I have to be “on” all the time.  Actually, I don’t… but I choose to.  I can’t hit the snooze button, stay in sweats, and pull the sheets over my head for the day.  Well, I could, but I choose not to. While the thought of that sounds so rebellious and delicious, I wouldn’t last more than 10 minutes in bed. I said to Harry last night after returning from dialysis… “I just need one of those days where I don’t have anyone depending on me to realize that I am right where I need and want to be”.

Yesterday was just another Tuesday in dialysis except it was 80 degrees out there and we were IN there.  Jack was relatively content, certainly more than me.  The only difference I could see is that I had an agenda and he didn’t.  I wanted to be running around outside barefoot in shiny new blades of grass and grilling on the back deck with the fam. (Yes, it’s a little too Norman Rockwell… but, I just craved a “normal” night with everyone home).  Instead, I was munching on animal crackers with Jack waiting for some miraculous visit from a doc to say “we found it!”. Surely, the doc had already gone home for the day but I still found myself fantasizing about the possible scene.  To add to my discontentment, Jack arrived in dialysis 2 kilos over goal weight because of excess sodium and fluid intake, which meant we earned an extra day of dialysis this week.  The only obvious choice at this point was for me to soften, drop the expectations, and get with the program. Freedom.

I am constantly invited to give up the notion that my highest, deepest desires lie outside of me, outside of this hospital, outside of this chapter in our lives. I practice being at peace with what is.  Some days… it’s easeful and other days it’s daunting. Yet, this is my work, my dharma, my choice to stay empowered within my experience.  I know that when we do get to the other side of transplant, other challenges will meet us.    It’s not meant in a Debbie Downer kind of way – it’s just life.  The waves will keep coming.  I can only hope to find some stillness in the pulsation and get better at riding the waves.    

For a boy on dialysis, Jack is doing well. However, he has had an acute change in his blood pressure last month, which is disheartening and highly stressful. We have started a new med that is dosed every 8 hours which adds some complexity to the schedule here. The docs are now reconsidering a nephrectomy (kidney removal) at the time of transplant.   In other news, we conquered pneumonia last month and Harry’s 14-day business trip to Europe.  Thank god for the grandmas who came to town and carried us through.  Still bowing down to nana (Harry’s mom) who managed to get Jack to dialysis and back in that nasty April snowstorm.

I do feel like we are getting close on a match.  However, because of privacy issues, the docs will not share ANY information other than “we have some good possibilities”.  Having this tiny sliver of information is SO encouraging for us, but also insanely consuming.  I assume every phone call is THE one. I wake up and say “THIS might just be the day” and it’s not. I see pennies jumping onto my path and think they are signs telling me we are close. I swear I even saw a kidney in the top layer of foam in my latte yesterday on the way to dialysis.  No joke… Jack confirmed my vision.  In the event that the current “good possibilities” do not work out, Jack will be activated on the national kidney registries for a deceased donor as well as the kidney paired exchange program. This will give him national exposure but there are over 90k people on this list also in line for a kidney. If activated on the list, his team at the U of M will continue to process new calls for a living donor as this is THE BEST possible scenario for Jack. 

It feels good to have let down some tears, grieve a bit, and create new space inside myself.  I know in my heart of heart, this is where I am meant to be.  I am honored and grateful to hold Jack’s hand in this journey.

THANK YOU for the continued love bombs on our back porch, the meals, cards, prayers, support on facebook, and contributions to Jack’s kidney fund. 

Thank you to the first graders for keeping Jack’s Saturday morning bright.

Thank you to Jeni Shoemate for watching my daughter every Tues when I go to dialysis.

Thank you to everyone who has called the U of M and considered donation.

Thank you to the two donors who were nearly THE one. You know who you are and you gave us the amazing gift of knowing a match is out there.

Lastly, thank you for the skim latte, the tears that followed, and the expansion of conciousness that I needed to keep moving forward with confidence.

I can only hope to return this love back some day.

With great love,

Al