Friday, March 16, 2012


Exsanguination -- why, you are wondering, is this word spinning around in my head?  Exsanguination is the bonus word that Oscar correctly spelled on today's spelling test. Really.

I stopped by school this morning to drop off Ruby's car seat and ran into Oscar's teacher. Her huge smile forecasted good news -- I'm not sure what I was expecting but it wasn't this.  My brow furrowed in disbelief as several thoughts raced through my mind.

He must have seen the word before.


Someone must have told him. 


Did he cheat? 

No way. (I feel horrible that this even crossed my mind)

I looked over at Oscar's aide who nodded, smiling, confirming.  By now the director of the school had joined the conversation and the marveling.  She, like all of Oscar's teachers, has been celebrating his successes with us since kindergarten.  (In second grade, when Oscar was reading his poems aloud at the class publishing party, the poems he had written himself, her eyes were wetter than mine.) 

As we discussed what exsanguination actually meant, Oscar bounced over and said, "let me see if I can do it again."

Without hesitating he rattled off the letters -- E-X-S-A-N-G-U-I-N-A-T-I-O-N.

I must have still looked surprised because when he finished he said confidently, "It's easy Mom. You just go syllable by syllable."

Syllable by syllable. Little by little. Step by step. He's so right. It's how he has gotten here.  It's how he learned to walk. It's how he learned to read, and ride a bike, and draw a giraffe. It's how he'll always move forward.  It's how he'll always accomplish his next goal.

I used to be so impatient, anxious even, waiting for Oscar to reach the next milestone.  When he was an infant I compared him to my memories of a precocious Abraham who took his first steps at 8 months. When he was a toddler, I'd pull out the developmental tests and check his progress against skills for his age group.  I'd argue to the early intervention therapist that he could stack those 1" cubes if he had better trunk strength and fine motor control and therefore he shouldn't be penalized on his cognitive scores.  I'd talk incessantly with other parents about what their child could or could not do.  I'd lie awake at night thinking about ways to help him along.

At some point though I stopped charting and calculating and wondering and worrying.  I still supported him. I still taught people how to break down tasks into smaller chunks so he wouldn't get overwhelmed and could feel a sense of accomplishment each step of the way.  I still took him to all his therapies and advocated fiercely for his placement at this amazing school.

But mostly I relaxed into the knowledge that he would eventually get to that next place and that it wasn't a race. Mostly I just started believing in Oscar.

It seems corny now but the very first book we read to Oscar when he was a floppy infant in the NICU struggling to stay awake long enough to feed was The Little Engine That Could.  There weren't too many books lying around the NICU but this little dog-eared copy was a staple and we read it no fewer than a dozen times in his two week stay.  We read it to ourselves as much as to him. We read it to glean hope that he'd someday be able to eat, to walk, to talk -- things we didn't count on in those early pre-diagnosis days. Oscar knows this, and sometimes when we express surprise at his latest accomplishment he reminds us that he is the little engine that could.

He reminds us to believe.


  1. What a grace-filled reflection. Your insight and your family's inspiration are gifts. Thank you for sharing this with us here. Way to go, Oscar!

  2. I am so happy to read these words and to hear of Oscar's continuing success. You are wonderful to share it with us -- your regular posting is so missed!