Wednesday, June 17, 2020


My toes are getting uglier," I lamented to my husband, pushing my foot out to show him while we watched The Sinner. (Great show, btw. Jessica Biel, who knew?) I haven't had a pedicure in months.

"Not as ugly as these toes," he replied, showing me his own. He hasn't had a pedicure ever.

I mull this over, man vs. woman. I don't get my nails manicured and I think it's ugly. He doesn't think about his nails at all. I feel unkempt and a bit avant garde with my brown and grey landing strip in the middle of the blonde hair, a sort of natural, unexpected balayage. His curly hair just gets curlier. He pats it down. He doesn't think about his hair much either.

Nothing is as it's supposed to be. The Chef aged out of the school system on June 10th, and for years I'd worked so hard, so hard at putting all the pieces together. He was accepted into the adult day services program of our choice. I felt something tight let go in my chest when that happened. A school year with only one snow day and acceptance into a great program? Sham-WOW! I nearly broke my arm patting myself on the back as I cried tears of relief. 

Then this.

For a number of years, I've been in a race to get my son set up for an adult life independent of us. In the past 6 years, we've had two brother-in-laws die unexpectedly and tragically, and my husband's best friend fought brain cancer for almost 2 years before he passed.  A colleague of mine on a nonprofit board and her husband were killed in a car crash, leaving their disabled son in a group home. Thank god, I thought to myself, that their son was taken care of before that accident happened.  But now, as I push the button on the washing machine every morning to launder the face masks we've used the day before, I feel unmoored. 

Everybody has something, my father told me. (In my family, you don't sit around and feel sorry for yourself. You get your ass up and deal with things.) But my something feels particularly heavy right now. I don't know where to turn or what to do. I guess none of us do.

The Chef doesn't want to leave school. He's refused for years to acknowledge that he's "graduating." We knew the transition would be fraught during the best of times. Great, I thought to myself when we learned where he would go. Now we can tell him where he's going and that he'll know people there. We'll be close and able to manage things. He'll have some continuity with his vocational work from school but also experience new opportunities. 


Oh, I'm sure they'll open up again. Of course things will. We can't do this forever. I mean, can we? 

While I've been impressed with the flexibility and patience he's demonstrated so far (thanks to increased meds, hard work by our behavior tech, and some creative thinking on our part), it's been a strain. He's regressed, mostly in his life skills.

He wants mommy or daddy to do everything for him. Instead of showering independently, he demands a bath every night.  I have to lay down with him every night to get him to sleep and then he still crawls into my bed in the middle of the night. Getting him to brush his teeth is a struggle. 

Poof. Poof. 

I spend my days programming for The Chef with the limited outings we're allowed. We go to Target, to Wal Mart, to the post office. We bake and drop off muffins and cookies and pies and cakes. We drive 45 minutes for ice cream because what the hell else are we going to do? Masked and gloved, armed with bottles of sanitizer, standing 6 feet away from everyone, we do what we can.

On my downtime--what little there is--I try to figure out how we're going to tell him that he can't go to Busch Gardens this summer or to the fireworks or sleep away camp. I have to tell him sometime soon that he's not going back to school.

Sleep away camp really hurts the most, to be honest. It's our only family respite time and I cherish it every year. He's 21 now and next year he'll be too old to go.

Poof. Poof. Poof. 

The best laid schemes o’ Mice an’ Men
Gang aft agley,
An’ lea’e us nought but grief an’ pain,
For promis’d joy!
--To A Mouse by Robert Burns