Friday, January 2, 2015

No Seizures, Tons of Irritability, and the Gawker

Today is turning out to be another roller coaster day for Mira, similar to some of her days last week, but taking it to a whole new level of irritability. She woke up this morning crying and wailing, lasting only a few minutes in her chair after breakfast before the onslaught of fussing restarted. On the positive side, she is eating and drinking fine, but very uncomfortable with something. She continued to be very distraught most of the morning and is still going strong into the afternoon. No seizures, no myoclonics - just lots of crying and irritability. We went out to swing for a little in the park, which Mira enjoyed briefly, but the irritability returned with intensity. Eight hours later, she is still crying off and on. We are not starting the year off on a high note, unfortunately. Today is a trazodone day.

We have pulled out all the stops today, but nothing has worked thus far. Right after lunch, I decided to mix things up and run a few errands with her - she usually loves being in the van, getting out and about. So Mira and I took a short drive down to Whole Foods. She enjoyed the ride, but her mood changed quickly. Once we were in the store, she started wailing once again.

When your 4 month old is crying in the store, most people stare and smile, offering that sympathetic frown to both parent and child. When your 9 1/2 year old, non-ambulatory, non-verbal child is crying at the top of her lungs, people just stare. They stare a lot. Some stare a little more, perhaps because they need to absorb what they are witnessing. Most people practice common sense and willingly exhibit appropriate social etiquette. They smile at Mira, then at Sarah, myself, Eli, Jonah, or whoever is with us at the time. Then they move on. Sometimes they have a nice comment on her shoes or give us a reassuring nod of encouragement.

Then there are people who just stare for an uncomfortable, extended period of time. This is when things get interesting. Sarah and I will call them out on it by simply staring back at them until they make eye contact with either one of us. After the realization that there has been some reciprocation with one or both of us watching them the entire time, there is that awkward moment where they don't know what to do, now that they have been exposed. About 98% of the time, they quickly scan their immediate surroundings and prepare an exit strategy because they seem embarrassed, which is understandable.

Then there are the gawkers. Gawkers are usually children, particularly girls, between the ages of 3 and 6. They love to stare because they are curious. They know Mira is a girl, very close in age to themselves, but she is in a wheelchair. They stare, but they ask questions because they want to know. For an adult, if you are staring for so long, I doubt you are contemplating your organic peanut butter options while locked in a glance with Mira, but rather wondering why our 9 1/2 year old child is functioning at a 3 month old level by crying and screaming. If you want to know, stop staring and ask.

I ran into such a gawker today. After we got through the preliminary round of extended staring and my reciprocating stare at her, the gawker slowly shifted her glance from Mira to me. She stared at me for a solid 3 seconds, then back to Mira (as she is crying) for a couple of seconds, and then back to me again. With such a prolonged exchange, I anticipated and prepared a response for her list of questions. Based on the length and intensity of her watching, I assumed she must have a complex question or at least something deeply profound to say. Completely void of expression, she said nothing. She just stared at me. I gave her a smile and continued to wait for a response that never arrived. She simply turned, while simultaneously raising her eyebrows, and walked in the opposite direction. This uncomfortable exchange of silence and stares only lasted 10-12 seconds, but it was as awkward as it gets.

My initial thought was Mira and I had deeply offended her, creating an undesirable Whole Foods shopping experience, one ripe for a negative Yelp review. Was she offended? Did she want me to try and quiet Mira's irritable disposition? Was my beard too unruly for Prairie Village's hygiene standards? But then I thought, I really don't care. I don't have any idea what was going through that woman's mind and I will probably never know.

The whole gawking experience gets under my skin, but fortunately, it rarely happens. It's been a kind of strange, 'gawkeresque' day I suppose - anything can happen. It's now almost 4:00pm. Thirty minutes after administering some trazodone, we are anxiously waiting for it to kick in, as Mira continues her marathon of crying.

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