One Year Later

I told the story at the beginning.

I always imagined that June 12th would be a painful, terrible day for us.
The day they told us that Sam has leukemia.

But today is a hard day too. Today is the day everything was set in motion.
June 9, 2012: the day we took Sam to the emergency room in Wisconsin for the MRI that would forever change our lives.

The day that the ER resident said, "I spoke to the oncologist on call."

I don't remember hearing much after the word "oncologist."

I do know that last night, when Sam and I had a very brief visit to the ER (all is fine, just a little over-worried mama checking out a low-grade fever and crabby Sammyness), we were put into the SAME ROOM we'd been in....I tried not to lose it.

We've come so far.
And yet we're nowhere and everywhere all at once.

A year has gone by, and Sam's body is still locked in a war with itself.
He is brave because we tell him that he is.
He is wise because we ask him questions that no one should have to ask a seven year old.
He is funny because we don't want him to see us cry so we try to make him laugh.

Our lives are not what they were. No matter where we go along this path, we are all forever scarred by the past year and the years to come. Michael and I, David, Solly, Yael and Sam...all our friends and family....we will never be the same.

We were supposed to be in Florida this week, watching sea turtles hatch and visiting the happiest place on earth.

Instead we're headed in for chemo and consults with doctors who have scary titles.

A year ago, Sam "graduated" kindergarten.
Who knew that his blood and bone marrow were already rebelling against him?
I search these pictures, looking for answers that aren't there.

Kindergarten graduation day

I took this picture below a year ago, wondering what it was like to have my kid's blood pressure taken...I have most definitely lost count of the thousands of times this cuff has been wrapped around his arm....and I don't know whether to laugh or cry about the fact that I see this picture and think about how this green cuff is now too small for him and I remind the ER staff to use the blue cuff (larger size) because it gets a better reading. Because that is what comes to mind and it is...real.

June 9, 2012

A year later we are stronger and wiser. We know what questions to ask (sometimes) and we know how to navigate the systems. But we are still worried and scared, we are still waiting and wondering.

But a year ago we never imagined the outpouring of love and support we would receive. We never imagined how our communities (real and virtual) would rally to support us through prayer and food and love and gifts and financial assistance. A year ago we never imagined that we would grow to love our nurses and doctors and consider them to be a part of our family. We never imagined that we would make friends with other parents with sick kids, that we would laugh and cry with them, and celebrate and mourn. We never imagined how the HOT unit would come to feel like a place of safety, how driving into the hospital brings us just as much comfort as fear. We never imagined how many good times would be interspersed with the bad ones. We never imagined how much knowledge we would acquire and how much we could hold onto and how much we could let go of. (We never imagined how many lasagnas we would eat and how much coffee we would drink.) We never imagined what how much our family could sacrifice and miss and yet gain and grow....

It's been a year of our lives. The journey is far from over.
But we're still here. And for each day, we continue to be grateful.