Wednesday, March 28, 2012


Last week I submitted an essay to the Children's Hospital Notes and Words Essay Contest and I just found out it was chosen as a semi-finalist, one of 18 essays out of the 220 submitted.  I am ecstatic!

As part of the semi-finalist round essays are posted to the Notes and Words facebook page where readers can vote.  Here is the link to my essay.  Gone by Mary Hill  If you like it, please LIKE it, and pass it along for others to read as well.  The more people that read it the better!

As you will see, it is an intense essay. I struggled with submitting, and now circulating, an essay on such a difficult topic.  However, I also feel strongly that people experience a wide range of feelings around having a child/sibling with a disability and while it might not resonate with everyone I do hope that it will help some, perhaps even a sibling or two. I did change the names of my kids, and I did get permission (multiple times) from my oldest to share his sentiments.

Thank you all, in advance, for reading, and for LIKE(ing) and sharing if you like!

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.

Monday, March 5, 2012

It doesn't get old

I'm not going to tell you about our tantrum-filled weekend with new records set for screeching and duration or my impatience with the slow processing or, for that matter, that just after I posted last we got lice (yes, me too) but that I still managed, thanks to my amazing inlaws, to get away to a fantastic writer's retreat with Kate Hopper and then when I got back Ruby got a stomach bug and now my hands are cracked and bleeding from over-washing and sanitizing and I'm still not letting anyone use the bathroom Ruby is using.  Nope, someday I'll tell you about all that, maybe, but for now I'm taking a class that is going to help me recognize and enjoy some of the small pleasures in my life rather than always fearing the next tragedy (today's back to back pre-dawn earthquakes did not help) or always focusing on what needs to get done or be fixed.  And so I'm going to tell you this instead:

Last Friday, like every weekday at a minute or so past three, I punched in the five digit code on the school's keypad, yanked down on the handle and pulled open the heavy gate.  Parents had already gathered loosely to chat and wait for their children to appear. The younger kids often stand at the top of the schoolyard with a teacher and then come bounding down the slightly inclined blacktop when their parent appears. The older kids walk a little more slowly, self-conscious pre-teens already, and slide up next to their parents rather than rushing into their arms.  Ruby does neither -- she marches or skips confidently towards me and, as she nears, bellows out a request for a playdate with one friend or another.  She balks when I say no, and pushes her flowered lunchbox, her purple fuzzy jacket and her backback into my arms before disappearing once again to climb on the bike rack or giggle with a friend.

Oscar always arrives several minutes later, slowly descending the steps one at a time from the upper classrooms with the other stragglers from the 4th and 5th grades.  He peers down at the crowd from under the hood of his brown fleece jacket.  It takes him a while to process the scene, to find me in the crowd, but his face lights up when he does.  He always has something to report and starts talking without introducing the topic first so that I spend the first few seconds trying to guess what he's referring to.  Or he'll forget to notice that I'm already speaking to someone, usually his teacher or aide, and start his story anyway.

On Friday though, Ruby stayed home sick so I was standing alone at the bottom of the steps when Oscar appeared. His backpack was slung over his right shoulder and in his left he clutched a red three-ring binder containing the script of the play his 5th grade class will perform in May.  With a huge smile he reported that they had just had their first blocking rehearsal.  He and his classmates moved around on a makeshift stage and delivered their lines for the first time.  To my surprise he was beaming. He was excited.

It doesn't get old....this reveling in things Oscar can do, in things Oscar wants to do.  Things that years ago I'd never imagined possible.

These past couple of days I've been listening to the recording of December's triennial IEP so that I can be sure to get all the nuggets of brilliance included in the IEP document notes.  Yesterday I heard his private OT and his neuropsychologist sum it all up beautifully -- because the space-time demands are fewer at his school and because structure and calm are embedded into the environment and because he has excellent food security and because he has formed caring relationships with his peers and teachers, and because his teachers have the patience and training and flexibility to meet his needs, his progress in the five or so years that each has known him is nothing short of astounding.  His OT said that he is one of the most earnest kids she has ever worked with, and that if Oscar is withdrawing from an activity then you immediately have to look at the sensory demands being placed on him.  After all, said the neurospychologist, he is the kid who begged his math teacher to teach him to multiply big numbers. (She did.) After all, chimed in the OT, he is the kid that insisted on learning to touch type with proper finger placement, not just two fingers. (He does.*)

And now the kid who five years ago sat in the lap of his kindergarten teacher sobbing with his hands covering his ears whenever there was clapping, the kid who refused to join his class in singing a song at an all-school community meeting, the kid who hid under the table whenever a challenging task was presented, is excited to perform in a play in front of the entire school and their parents and grandparents and friends. He's excited to learn his lines and remember where to be on stage. He's bounce-all-the-way-to-the-car-and-talk-about-the-play-the-whole-way-home excited.

Nope, this reveling in all he can do, in all that his wonderful school has supported him in doing for nearly six years now, will never get old.

*(We just got his Certificate of Completion from the Mavis Beacon typing program.  Accuracy -- 96%.  Words per minute -- 4.  I love it.)