One year

Today was a hard day. We'd been watching it on the calendar creep closer and closer. I knew it really didn't mean anything - one year from the day of diagnosis holds no special significance. Maybe it would pass with little emotional fanfare.

But this morning I kept thinking about those damn petechiae. Her chest was covered with them. It looked like an odd rash. Because of snow the day before, school was cancelled. Late in the morning I unzipped Hope's footie pajamas to get ready to play in the snow and saw her speckled trunk. I called Greg over to look. I told my neighbor Stephanie about it. Should we dig out the car and take her to the doctor for a look before the weekend? Coupled with a runny nose, I thought it might be viral - but worried it might be strep with a rash; Quinn had that once. I got a 4:00 appointment. 

Today at 4:00 I was dropping Celia off at futsal and after she got out of the car it occurred to me that one year ago at this time I still had the innocence of not knowing. As my mind replayed the doctor's visit and the subsequent visit to the lab for the blood draw, the horror of it flooded me. Watching myself not knowing, as I heard the word "petechiae" for the first time, as the doc told me she had a very high white cell count, as I drove home wondering why they were waiting for a pathologist to look at her sample. All that time and for who knows how long before that day, cancer was waging war inside my beautiful baby's perfect body. And I didn't know. Until I did.

Until I was sitting on my bed trying not to scream into the phone, calling my parents and telling them to come right away, carrying my baby across Orleans St from the parking garage into the ER while she kept saying, "I okay." Until young Dr. Gordon came in and told us definitively, and everything was quiet and loud, too bright and completely black. "But she isn't sick. She just has a runny nose." 

I didn't know and then I did. After today, a whole year will have passed since we didn't know that horror. It keeps getting further away and someday we won't remember what it felt like before.

I have these two small stones inside my armoire. Courage. Joy. I need the reminder every day - and I guess especially today. It's just another day on the calendar. But to face the horror of those memories I need as much courage as I can muster and to be open to the joy of each new day.

I can do it my own self

My parents like to remind me of a frequent refrain from my childhood: "I can do it my own self!" It is both the blessing and the curse of the four year old. Independent, determined, persevering: it's the only means to learning the myriad skills needed to function in the world. Hope's speech is not always intelligible, but these days we are clear about a few key phrases: 

"Leave me alone!"

"Let go!"

"I do it!"

She dresses herself every morning - and changes at least twice before leaving the house. She opens the car door and buckles herself into her car seat. She gets her own snacks and disappears into the bathroom to use the potty for long stretches many times a day. 

It is exactly as it should be, but it does require patience - and flexibility - and clear thinking about where the lines in the sand must be held no matter the tantrum that might ensue. So I let her ride in the back of the shopping cart (while she shouts "I'm squished!" every time I put anything in)...

and wear my coat when we are late to pick up the big kids...

But she can't forego her car seat no matter how long she pouts...

She is reaching new heights. It is breathtaking.