“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
