Unscheduled Interruption

Parenting is all about The Schedule.

In addition to the typical sleeping/diaper change schedule, Luella is also on a feeding schedule (through her feeding tube every 4 hours and continuously for 10 hours overnight), medication schedule (11 pills, 12 mLs of liquid meds, and a vitamin drop everyday), and weekly therapy schedule (physical, feeding, and occupational).

In theory, The Schedule keeps all of Luella’s needs organized and attended to throughout the day.

In practice, The Schedule is threatening to seize every last shred of spontaneity from my life.

Standing Toy

new toy

I do not operate very well on schedules.

I’m perpetually late.  I regularly wear my bathing suit in lieu of more traditional undergarments when I’m behind on my laundry schedule.  I don’t plan my meals for the week because I don’t like ANYONE telling what to eat for any given meal, even if that person was a more health- and budget-conscious me, three days ago.

Which is why, when Luella and I took a last-minute trip to Vancouver, B.C. last week, I had no good answer for the border guard when he asked, “Why are you headed to Canada?”


new car seat

I knew that “I’m attempting to escape the monotony of my day” and “I’m proving to myself that having a child with special needs doesn’t have to be a barrier to acting impulsively” weren’t good answers.

“Just going on an adventure!” didn’t fare any better.

After a brief interrogation followed by a thorough search of my car and purse, Luella and I were finally let through.  We boarded the Skytrain at the nearest station, got off in an unfamiliar neighborhood, ate dinner, and returned home.

train travel

new city

The whole expedition took less than four hours. It was an efficient form of therapy: I got back to Bellingham feeling much less like an overscheduled, claustrophobic robot and more like the audacious, breezy mom I had intended to be.

I know that I can’t run to Canada whenever I want to avoid The Schedule (my nerves aren’t equipped to handle another interrogation anytime soon), so I’m trying to instill more novelty into my daily life.  

new pigtails

new pigtails

So far this week I’ve walked an alternate route to downtown, sipped coffee at a different shop, baked a new dessert recipe, and made an impromptu decision to do Trivia Night at our neighborhood brewery.

I’ve also lost my car keys, arrived 10 minutes late to a therapy appointment, and let all of my clean laundry wrinkle in the basket.

If it didn’t sound so boring, I’d say adhering to The Schedule a little better should be the unorthodox thing I try next week.


Health Update: We recently had a round of appointments at Seattle Children’s Hospital and are excited to report that there is nothing exciting to report.  

Luella is beginning to work with another specialist through the Birth to Three program to specifically address her Cortical Vision Impairment (visual impairment caused by a brain injury).  She, along with her other therapists, will be helping Luella with visual-processing, cause and effect, and decision-making.  We also now know that Luella’s vision surgery last year was unsuccessful in giving her binocular vision (eyes that work congruently, rather than one at a time).  Because of this, she will never be a professional baseball player or jet pilot, an outcome which I have lost exactly no sleep over.

No, we have not heard if we won our GroupHealth appeal for the pediatric stander.  Yes, I am still peeved.


3 thoughts on “Unscheduled Interruption

  1. The look on Luella’s face in the New Toy picture is priceless. I applaud your gumption – not just a change but an INTERNATIONAL escapade!

  2. This is one thing that really drives me nuts about having a special needs kiddo. It takes so much planning and preparation to get out of the house that anything outside of “The Schedule” just doesn’t happen much. My son just got a new reduced schedule so we are currently enjoying some extra freedom over here.

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