Akiva in Cobble Hill Park, November 2011 I love Thursdays. I hate Thursdays.

Every Thursday, as I prepare Akiva for the day ahead and walk through his morning routine I try not to feel too pleased that it’s Thursday.

I pack up his lunch along with his pajamas, a change of clothing and make sure that he has clean socks and a toothbrush while Akiva hums his way through his breakfast of toast and fruit, his ever present iPad playing his favorite tunes or stories. It’s Thursday at Shalva, Akiva’s afternoon program of fun, peer activities and family respite. This year, Akiva goes 5 days a week to Shalva, along with many of his Feuerstein school mates – on a school bus – after school each day. He returns home at 6:30/7:00pm relaxed and happy, after a full day and a tasty dinner at Shalva. Great, right?

On Thursdays, Akiva also sleeps over at Shalva’s immaculate facility in the Har Nof neighborhood of Jerusalem, tucked into his bunk bed with Shimmy, or is it Sendy, in the top bunk bed, a staffer nearby in case of any nighttime needs. On Friday morning, Akiva is bused to school, returning home to get ready for Shabbat at about 12pm to a house humming with pre-Shabbat activities.

Not bad at all. Thursday nights, Ira and I often go out for a late bit to eat, or schedule stuff that isn’t as easy to do the rest of the week when a sitter has to be booked if we both want to step out together and the big boys aren’t around – which is almost never these days. Sometime we just cook for Shabbat and relax knowing that we don’t have to get up at 6:15am on Friday.

I always wonder what time I’d get up on a regular basis if Akiva was a teen of typical development, or, what I like to call ‘ordinary.’ If Akiva was ordinary, he’d roll out of bed – or not – and if I was a nice mother I might slap a sandwich together for him – or not – or maybe he’d just kiss me good bye as I’d lay slothfully in bed until 7am. Hard to imagine.

Instead, Ira and I have a weekly rotation of mornings, based on our gym and work schedules, one of us freed from the morning routine every other day. Mind you, it’s not like it’s so hard. After years of getting up early – in the dark and cold – Akiva’s a pro and quite routinized to the system but it’s still an effort and I confess, I hate it.

Did I say I hate it? After 21.5 years of steady parenting, it’s hard to find a way around this feeling. Is it time to hire the live in? Ira and I often analyze the numbers and what it would mean to have someone in the house – all the time. Great, I think, especially if it meant no morning stress and evenings where I could hop out and do what I want, when I want.

And then, that monster called parental guilt hits. I love my boy. Love his chipper, good nature in the morning and his loving hugs at night before bed. Okay, I get it – I love Thursdays and most importantly, Friday mornings – and am just grateful to Shalva for the parental respite. Getting a break really helps break the parental doldrums. And besides, guilt is just a bore – doesn’t really help work through the real challenges of disability every day.

As I write this, it’s Sunday. Deep breath. Thursday will come soon.

Akiva standing tall

By Beth Steinberg, Shutaf Co-Founder