“CA – COO! CA – COO!” The slam of the toilet seat lid followed by the door crashing against the backstop has already awakened me, so this mantra just gives me a headache.  It’s 5:30 in the morning. It’s Saturday. I jump out of bed, grab Jarret by the hand and run out of the bedroom before he fully wakes Peter. As we head downstairs he continues shouting “CA-COO! CA-COO!” (or on any given morning it could be, “I WANT TO WATCH BLUE’S CLUES!” or “I DREAMED ABOUT A FERRIS WHEEL!”) Although I know he rouses Austin and Tyler, they always manage to fall back to sleep.

The only two family members who really benefit from this routine are Kong and Delaney. Jarret and I let them out as soon as we get downstairs. But when they come back in, I’m too tired to give them the attention they seek. Instead, Jarret climbs on top of Delaney, our more tolerant Lab. “Jarret, what do we do to the dogs?” I ask. “Just pet,” he says as he strokes Delaney. Then he climbs back on. By 5:45 the fog starts to lift and I begin to rehash the night. It’s always about the same. I go to bed around 11:00 and sleep soundly until about 3:00. From 3:00 to 3:15 my need to pee gnaws at me until I finally go to the bathroom. Although I tiptoe in, put a piece of toilet paper in the toilet to absorb the tinkling sound, position myself toward the front of the toilet seat so the stream hits the bowl – not the water – and tiptoe back, I know Jarret somehow hears me. I climb back to bed and seconds after I fall asleep, a trail of lights goes on and heavy uncoordinated footsteps approach. I intercept him before he makes it to our room and lead him to his bathroom, put him back into bed and promise him he will earn smiley faces (15 will earn him a pack of Blue’s Clues notebooks) if he stays in bed until it’s light out. When I finally lie back down in my bed, I try to avoid thinking. Thinking about things like my Mother’s debilitating health issues or how I’m almost 50 years old. Remarkably,thoughts about Jarret’s fate never keep me awake. And they rarely upset me.

Jarret is 11. He has an undiagnosed medical condition that manifests itself globally. And enigmatically. From a cognitive perspective, his abilities are scattered. While he rarely puts a complete sentence together (as a 3 year old can), he has the vocabulary of an eight year old. He has difficulty writing his name. Jarret received private violin lessons at school weekly, for two years, but he can’t play a string of recognizable notes – his fine motor skills prevent that.  But when he sits down at a keyboard, he can play simple songs on request (even if he’s never played them before). And he doesn’t even look at the keys. Tonight he sat down and played “Deck the Halls with Boughs of Holly” – a song I didn’t even know he knew. I don’t believe that this is a savant-like trait – I think he’s got a good ear for music – but not just for music. If he met you five years ago and you made a funny noise when you were with him and he hadn’t seen you since, he would probably make that funny noise if he saw you again today. That’s where the “ca-coo” comes from. Austin’s friend once made that sound.  The mere mention of his name and Jarret bellows “ca-coo.”

It’s been 10 years since our quest for a diagnosis began and we are no closer to finding out what Jarret has than we were when he was one.  I can tell you what he doesn’t have: a chromosomal disorder, a mitochondrial disease, a lysosomal storage disorder, and one of a long list of micro-deletions.  Regardless of not knowing what is wrong with Jarret, I can tell you what is right with him.  And I am not just saying this because I am his mother; his teachers and therapists and anyone who knows him well adore him.  He is almost always happy, almost always having a good time, often making others laugh and smile.  He is easily entertained by the simplest things – watching a video of Riverdance on YouTube, over and over again.  Reading numbers off highway signs, speed limit postings or mailboxes as we drive along.  And any exposure to music is thrilling to him.

As his mother, I am an instructor of table setting and an overseer of tush wiping. I have mastered the lesson of proper shirt orientation. And every Sunday I offer a hands-on class in food shopping.  The built in obsolescence inherent in the job of a mother is not a factor when rearing a child with special needs.  While my Ivy league undergraduate degree and MBA may make me overqualified for the position, I know that this is a life-long career. And I fear no threat of anyone trying to steal my job.

While my classmates from Wharton and Northwestern may be managing hedge funds or leading large corporations, no job offers the daily rewards that I receive in the form of a complete sentence or a properly spelled word.  I may not get the necessary eight hours of sleep every night, but there’s always Fraxel to make me look fresh.  More important, I may never be an empty-nester, but my house will never echo with emptiness. With Jarret around, there will never be silence – only singing and laughter – and I will never be unemployed.

Thanks to Jarret, I will always lead a life of purpose.