The Rhythm of Life

When I think of the word rhythm, what comes foremost to my mind is a picture of my grandpa's metronome. My grandpa, when he lived in Russia, was a fairly well known voice professor who dedicated his whole life to the perfection and instruction of the human voice. As long as the human in question was applying said voice to opera and only opera, that is. Opera, in my grandpa's mind, was the only music worth bothering with. All other music he condescendingly referred to as "the bebop" with a lot of Russian eye rolling and sighing. He taught me about rhythm by sticking his old wooden metronome on the edge of his piano, and commanded me to never take my eyes off it during the whole voice lesson. Since it was conveniently eye level to my ten year old self it was pretty easy to get completely mesmerized watching the little weighted metal stick swish side to side, side to side, side to side. 

I'm thinking now, almost twenty years later, that it may have been part of grandpa's plan to make teaching an obstinate and not very talented grandchild less of a chore! When I think about rhythm now, it is a clear one-two-one two march that never falters and never skips. 

It marches on always as it is supposed to and is now, just as it was then to my childish self, a comforting thing.

Life has many rhythms, but my natural assumption is that life should also unfold in a nice one-two-one-two manner. One thing after another that never overwhelms or jumbles, and each in its proper time.

I don't need to tell you that it's only in my brain fantasy that life follows a proper metronome. 

Life marches on, that's for sure, but less like a metronome and more like a malfunctioning sprinkler system of an overly zealous lawn maintenance man.

Arhythmic.

Out of control.

Totally drenching.

Oh and cold. 

This past spring I had a hundred plans and rhythms set for how the summer months should flow. I should have known better!

Here it is fall now, the leaves are taking on colors, the breeze is becoming sharper and I'm pulling out warmer layers from storage for the kids to wear to school.

And Leo is still suffering from seizures and all my pre-programmed rhythms are completely out of whack. 

Grandpa would have been furious with me in his characteristically Russian passive aggressive manner. 

"Vhat do you KNOW!?" He would shout at me, red-faced, hoping against all reason that I would respond with brilliant music theory and a perfect solfege, both delivered with a nice wide open smile that is known to relax and expand the vocal chords. 

Instead, he would of course, get the teenager version of Russian sighing and eye-rolling.

Once a habit always a habit....

My rhythm of life feels more like a run-a-way train than a demure soprano who has a perfectly supported diaphragm. 

But what would really make Grandpa surprised is the fact that somehow, for whatever reason, the crazy rhythm isn't actually causing Armageddon.

In fact, just like my tiny self fascinated by the old wooden metronome, so I feel right now, fascinated by all the twists, turns, setbacks, achievements, fears and respites that makes up the rhythm of life for us right now. 

The new anticonvulsant medicine that Leo is trying after the disastrous attempt and consecutive allergy of the other one a month ago seems to be going ok, though it is working fairly grudgingly with still one or two seizures slipping through its control daily. 

I can tell you that there is nothing that shatters a rhythm into a billion empty pieces better than a seizure. 

But weirdly, those daily seizure explosion events though never wanted or needed seem to impose their own rhythm after a while. 

Leo is either playing or learning or goofing off and then WHAM he has a seizure for 30 seconds after which he gets all groggy and cuddly for ten minutes, then he gets hungry, then it's potty time, and then off we go again (with deep calming breaths) to try to salvage what ever is left from our plans for the day.

It's a "no good" rhythm as Grandpa would say, but good or no good, it's what we have.

Besides the seizures, fall has really kicked off to a memorable start with most of Justin's carpentry tools getting stolen right out of his work trailer at a job site, dentist visits, Leo doctor visits, long grinding work days and culminating with the old family dog having to be put down. It's a rough rhythm, and I can't deny that there seems to be a trend...

But strangely enough, I'm not ready to throw down the towel, or kitchen plates as my Grandma used to do when Grandpa was being particularly Russian, I'm actually thinking I'm finding the beat in the madness; the glimpse of stillness in the marching mayhem.

It's not opera, but it's not the "no good the bebop" either.

Although Leo still has daily seizure events, they seem more like a controlled burn instead of a raging wildfire. And I'm still hopeful that they will only get better. Kindergarten has also started up for him with a bang (and with seizures though his stellar team is unfazed and able to deal with them accordingly) and Leo absolutely loves his new school and class. Every Thursday they head into the woods for the day and learn all about nature! It's so awesome to see him get back into the swing of learning. Now if only we could get those seizure gone 100% I would start signing opera myself from joy!  A week from today we are taking Leo to Boston Children's Epilepsy Center for a second opinion. Hopefully, a fresh eye may lend some useful perspective into the Little Lion puzzle.

Yesterday he also saw an orthopedic doctor who recommended he get feet and ankle orthotics to help his joints alignment and walking stability. He will get fitted for supra malleolar orthosis (SMOs) next week as well. I'm hoping they have them in little lion style! 

It's a mad mad rhythm of life but it's also strangely beautiful because in those rare moments when things seem to pause; when a glowing leaf is caught in a glimmering ray of fading sun as Leo giggles madly in a spinning swing, I feel a surge of peace and also a little bit of pride, in this strange music of our life.

I think Grandpa would have liked it too.

Eventually.