Thoughts

I miss writing here more often. There are so many thoughts to work through.

Thoughts about spending 7hrs in front of a computer and the health of my back, which we all depend on.

Thoughts looking over the programming that highlights skills being worked on with my almost 3yr old: smile reciprocally, respond to name, gesture ‘bye-bye’, make eye-contact, etc.

Thoughts about presuming competence and neurodiversity.

Thoughts about homeschooling.

Thoughts while I guide A in his walker out of daycare, smiling and nodding at the other parents who’s children bounce along, finally pushing him slowly to the car while he lets his feet drag, doling out perky cheers like “use those feet mr!” while he gazes off.

Thoughts as my 115lb-self wrangles a strong, arching 33lb boy, then yanks apart and loads a heavy walker, and pulls out of handicap parking spot, feeling simultaneously defiant, exhausted, ridiculous, strong, special.

Thoughts as I rest my head on A’s back and quietly cry following a longer, shakier seizure, resisting the weight of defeat.

Thoughts about our stance on more medication, the ketogenic diet, marijuana oil, other therapies…

Thoughts on celebrating the incredible, clearly brilliant, little man that E is and finding more time for him and his intellectual development/curiosity.

Thoughts on how to do better, how to delegate more, how to connect, how to help, how to get help, and through all of this, remain happy, healthy, satisfied, and well.

Thoughts on lack of sleep, hobbies, exercise…

A busy life

Life. It’s a beautiful, trying, evasive, immediate thing.

We’re heading into an adjustment for all as I return to work from my mat leave next week. E has started attending a nearby home daycare and is totally settling right in. A relief. And A will be going up to 4d/wk at his daycare and also moving into a preschool room. The leaves are changing colour.

The wood is piled, the nights are cooling, the wind smells like apples. Every meal somehow incorporates tomatoes and/or zucchini.

Every hour seems dedicated to streamlining. How to smooth down each task, like rocks in a river, so that they eat up as little valuable time as possible, run smoothly and efficiently, feel satisfying instead of draining. In itself, an endless fight against entropy, lack of sleep, the propensity of small children to create endless messes.

To fit in things like visits with friends, strolls along the river, baking seems not yet attainable, but someday, once we all settle into the new normal.

A broke his Kidwalk walker with all his wild jumping – a large, substantial spring literally broken in half! We’re waiting for a replacement to be sent from the States. We’re all really missing his independent, upright time. He’s tirelessly throwing his head back – from kneeling, sitting, standing, being carried, etc. It’s quite exhausting to police and cringe-worthy to watch. Might try a sensory suit and some exercises that encourage flexion vs. extension. A and all his different facets of struggle. Struggle or substance? He’s beautiful always.

We hired a private speech therapist for extra communication help. It was SO HELPFUL to get her input. Working on implementing her recommendations. More on that later.

Still daily seizures for A, but less lately. We decreased the clonazepam and think that might have helped. Maybe it’s giving the ketogenic diet more of a chance, or maybe it’s just not helping period. EEG and neuro appt in a couple of weeks.

Currently half way through my first four hours of child-less time in… almost a year? It feels comfortable, quiet. But I miss my kids. But it’s time. Time for us all to do things apart, receive the richness of life that comes from leaving one’s house, and then come back to each other and share all that we’ve learned.