{Originally published on Foment, Bee Lavender’s Journal}

For the most part I ignore my own dreary medical drama. There isn’t enough time in life to accommodate all the good stuff: adventure, travel, friends, love, lunacy.

This does not mean that I am exempt from fear and grief. I just save it up until the crisis has passed.

Riding the bus back to the city centre after my appointment, I could feel my heart racing, see my hands shaking.

Since I didn’t have my bicycle I could not literally ride away on a wave of anxiety, so I did the next best thing – talked to a friend who mocked me into a reasonably calm state.

Then I went searching for gifts for new babies, sweet boys, sick relatives.

At the toy store I queued up clutching a Playmobil figure without paying too much attention to my surroundings.

Apparently I had accidentally dropped in on a fashion conversation because the woman at the counter gestured and said Now this lady is chic.

I stared about in amazement since you would never normally see such a creature in this town but she was pointing at me.

Huh? What? I’m no lady (fill in your own vaudeville joke here) and my tattered sartorial state does not equate with ‘chic’ even on a good day.

I was not having a good day.

Though I have a special leftover childhood reserve of anxiety over what to wear to visit the doctor, this has in the last few years mainly translated to concepts like wear clean clothes that cover the tattoo.

{Originally posted on Momo Fali}

The way I look at the world has changed. It’s not because I’m getting older and it’s, for sure, not because I’m getting any wiser. It’s because I am the parent of a child who doesn’t fit the mold.

My son is not typical. He is not autistic, he doesn’t have Downs, there is no disease, disorder, or diagnosis of any kind. On one hand, that’s something for which I am happy. On the other hand, it can sometimes be frustrating.

The geneticists were sure there would be some way to classify him, but after extensive testing they came up with nothing. He is an enigma.

His expressive speech is that of a three year old, yet his teacher says he’s gifted. He is still in need of therapy, but our county agency doesn’t want to pay for it anymore because his I.Q. is too high.

He has a hearing loss, but it’s not something a hearing aid can help. He loves music, but can not sing you a song. He can read a book, but can’t tell you what it was about after he closes the cover. Yet, he can take a computer test on that book the next day and get every question right. So far this school year, he has taken 103 such tests.

His defective heart is stable enough that he can ride roller coasters and play sports, but an anesthesiologist at an outpatient surgery center won’t touch him because he’s a “heart kid”. Something as simple as ear tubes requires a trip to the hospital. A tonsillectomy meant an overnight stay in the ICU.

He’ll be seven in May, and as of Sunday he weighed 37 pounds. He can ride a bike, but can barely reach the pedals.