good news

my days are still taken one at a time. days are long. time is short. sleep is thankfully less elusive than it used to be. and i have some good news ...

one of calvin's new drugs, xcopri, is helping him sleep better. it has also helped him to go sixty days without any seizures on the heels of a forty-eight-day seizure-free stint. xcopri has also allowed us to completely wean calvin off of the homemade thca cannabis oil i have been making and giving him for nearly ten years! i'm so grateful i was able to provide it for him for so long because it seemed to help his seizure control, but what a relief not to have to source the cannabis flower, buy it, get a liquor license to purchase and ship the 190-proof organic alcohol i use for extraction, make the oil, measure it and administer it!

calvin is on track to have just a fraction of the forty-two grand mal seizures he had last year. If he continues to be seizure-free on his current xcopri dose of 200 mgs, he will end the year with only seven grand mals and one focal seizure! That may be the fewest seizures he's had since first being diagnosed when he was two years old.

as calvin enjoys better sleep and longer stretches between seizures, he seems to be happier. he smiles more when we hug and kiss him. he seems slightly more compliant when we take him places. at school, they are having him wear a compression vest, which they say calms him. i'm grateful for every bit of this and so pleased i can share it with you!

besides all this good calvin-related news, my personal joy has been coming from near-daily running, taking photos, baking, and a bit of gardening. i would like to post to my blog and work on my memoir more, but i am trying not to "should" myself. i am simply hoping to find joy and some sense of freedom from calvin-related worries.

so, forgive me if you don't hear from me much these days. i'll try to keep checking in, and i'll try to write something that is more than simply an occassional news update.

be well, friends. xoxo

maddi

A week ago today, I dropped off my beloved niece, Madison, at the airport after a week of fun with her while Michael was in Wyoming for two and a half weeks at an artist's residency. On the drive home, I kept thinking about images like these in which she is demonstrating her life-long (Calvin's life) love for my son, her little cousin.

 

While she was here, I felt like I was on a mini vacation. We did things that I rarely do. We got take-away Thai and Indian food, lobster rolls at a working dock, and went for a long walk on the beach. We sat outside around a fire a few times, and enjoyed just shooting the shit and getting reacquainted.

Ever since Madison was a little girl, she has been interested in and has had a fondness for Calvin. She really does love her little cousin. The week she was here, I found out that Madison is also an AMAZING caregiver. I've seen exactly no one besides me and Michael love and take such good care of Calvin. She needed very little training or reminding of even the smallest detail. Her love for him is so authentic, and she expresses it in so many ways and tells him often throughout the day.

 

It heartens me to know that, should anything happen to me and Michael, Madison will become Calvin's guardian. I wept on the car ride home thinking of that, because Calvin is the sweetest soul I know, and I want the very best for him when we are gone, should he survive us. We have found exactly that in Maddi.

 

And so, in the wake of this last week, my love and gratitude for her has welled up and spilled over. And, better yet, she might be coming back in August!

 

Love you Maddi. You make the world a better place.