Tuesday, February 2, 2010

Aria's August Follow-up

August 31, 2009
Subject: Aria’s August follow-up
I just want you all to know that despite being surrounded by what seems to be insurmountable suffering, we continue to be blessed. We continue to have light. We continue to take steps forward in a strange but glorious way. We continue to have hope and I say that not because I believe it or even understand what it means but because it's what everyone seems compelled to say, so I'll simply follow suit. I do that because it amuses me.

Aria is beyond my comprehension. It is as simple as that. I don't understand how she endures what she does with such light, dignity, cheer and grace. It is phenomenal and I am so proud to be witness of it and to share it with you. She is without a doubt some kind of wonder.

Aria's lab work was terrific. Her ANC this time around was 1900, which is higher than we'd like but nothing alarming. No one bothered to tell me her hematocrit. I was simply told, "The rest of her labs are great!" What is so fantastic is that she has a bright green light to begin Kindergarten on Wednesday. I have some trepidation about the whole school business and it's similarity to that of a petri-dish but I am resigned to taking that important step and going where it takes us. It is all so good.

In this note, I shall leave it at that. I shall not tell you stories about people with whom we interact and how their journeys intersect with ours or stand entirely on their own. This journey is neither all about that nor all about Aria's superb status. It is a healthy mix and I'm afraid I've been on the darker side of the cycle for the past few messages and it is time to stand still in the light a while.

A friend asked me recently, "How do you do it? How do keep from being completely consumed by it all?" I suppose the operative word in that question is 'completely'. I am neither completely optimistic nor am I completely despairing. You see, in the illusionary world of control there is but black and white, right and wrong, good and bad and such. I have come to understand that the tiny space that connects this seeming duality is an infinite realm. Like a water droplet, I am attempting to drip through this crack into that infinite space and as I do I find myself turning toward the rising sun. It is here as morning dew that I reverently remember that upon the gift of this day I am beholden to its promise. It is a brand new day and a priceless token. I glisten in celebration. ~j

1 comment:

  1. I am a pediatric critical care nurse and freelance writer who has a passion for kids dealing with serious illnesses. I have found them to be so inspirational and honest, spunky and insightful, and often times they have more of a handle on life and what is important than most adults I know. I am working on a children's book about a fictional character showing all of those hopeful and positive things I have seen first hand in kids I have cared for. Blessings to your family on your journey.