My Reuben

This is my Reuben. So much about this photo screams "Reuben" to me.

He's got brain ruts, and they're deep. ;) If you know Reuben at all, you probably can name off three or four of them without any prompting from me: water, Brian, bananas, putting diced food into a pot, the iPad, his Bible, Faith (because she helps him play in the water), anything blue, Kelsey (because she's almost as much fun as Brian), fire (in either bonfire or candle form). I dare you to try to redirect Reuben's path once he's started off in one of these ruts! ;)

This is a bronze statue outside of our library. We've taken a picture here almost every summer since they put it up. Here's a good one from 2010:

Owen (5 years old) and Leah (3 years)

 This year we again got our picture, not quite as nicely posed, but still captures the memory. (I'm holding 'Vania and Owen was already running off to the van - getting a little big, I guess, to sit on the bench!) In fact, we were just getting settled for a nice one with this crew when Reuben was up and off. Wait! Reuben!! Wait, buddy! Aeh, he's off again. Thankfully Owen's over there and we're parked in the handicap spot right by the end of the sidewalk so he can't get far. He's probably just heading over to the big drain next to the sidewalk anyway, and that's not in the parking lot, so it's safe.

 But he's off with a different single-minded notion in his head. He wants to go get his Bible out of the van and sit on the bench reading his Bible. He can't just "sit." And once he gets an idea like this in his head he can not be interrupted without screaming and self-harming behavior that may be over in under a minute and may last for the next hour and a half. No way of knowing. Leah gets it, so she followed him back to the bench with the camera while I worked on getting other little ones buckled into the van.

Hey, cutie.

Matt and I were looking back for an older photo earlier this week and came across some of these in the process:

Reuben, three months old

Reuben, four months old

Reuben, 1 year old

These are all Reuben before. Before his seizures started. Before we knew he was delayed beyond the limits of "normal." Before his ring (20) chromosome syndrome diagnosis. Before.

And every time I look back at any photo of him, my mind immediately classifies it as "before" or "after." So much of my life is classified as "before" or "after" his diagnosis.

It is hard to describe the sharpness of the sorrow that slams into me when I look at these darling, smiling pictures of my baby boy. Please don't get me wrong. I love this boy now probably even more than I did then, but you never realize how many dreams and expectations you have for your children without even realizing it. Things like talking with them, like watching them grow up and read books or play with friends or on sports teams, or sing with the children's choir at church, or some day learn to drive a car, or see them start developing interests and skills that will serve them into adulthood. It's not that these things can't happen for Reuben (well, some of them, like driving a car, never will, barring a miracle), but they absolutely will not look like what my unconscious picture of them before looked like.

Reuben is a HARD child to care for. There are very few people outside of our immediate household who fully understand what that means. Every once in a while someone who is close to us and sees him frequently will see something and say to us, "Oh. Now I get it when you say that Reuben is hard," and it will be in response to such a relatively minor, short-lived episode that far from being comforted, it makes me want to shout, "You have no idea!" And yet there is comfort in it, too, when someone sees at least a glimpse of the challenges that this boy brings. The 24/7 altertness for seizures is pretty obvious. Matt and I haven't slept well in nearly four years. People often tell me that I look tired. "Why yes, I am. Thank you." I woke up this morning after two good nights in a row and honestly asked Matt why I still felt so tired! He reminded me that two good nights doesn't make up for years of mostly rough nights. And, that a night when you've been up with Reuben twice and up with 'Vania twice, so four disruptions to your night doesn't really count as a "good" night to most people.

Reuben screams. He screams when he's excited about something. He screams at you when he's upset. He screams just because he can. He screams loudly. ;) The screaming gets to Matt sooner than it gets to me, but it can still wear at you to live with screaming all day long.

Reuben bangs things. He bangs the door when you tell him he can't go out. He bangs his head on things: the door (after you tell him not to bang it shut), your arm (when you are physically guiding him away from something - I have a permanent low-grade bruise on both of my forearms. It's always just a bit tender.) He bangs the spoon on his plate, the table, his teeth. He bangs things on things - he can't just set something down, he has to throw it down. Gentle, Reuben is a phrase that gets thrown around a lot here - gentle with your voice, with your head, with your hands, with your feet, with your toys.

And he's mostly oblivious to the unacceptable nature of his behavior. It's (usually) not that he is being "naughty" but is rather just the way he works, the way his brain works. It's who he is.

Anecdote from the Fair. Grandma (my mom) is taking Rinnah to the potty. Dad is getting Sweet Martha's cookies with Owen. I'm nursing 'Vania and feeding Krassi. Grandpa (my dad) is "on" Reuben who is excitedly (think screaming) exploring around our bench, and as usual, has no sense of staying close to mom. He takes off running toward the Grandstand (screaming! though happily...) I call to him, "Reuben! Reuben! Look at mommy. Reuben, look at mommy. You need to come here!" He turns and looks at me and holds his finger to his lips. He's thinking "gentle with your voice." He's not thinking "Oops. I almost ran away from my family into a crowd of around 100,000 people and I don't know how to say my own name, much less any other information that would help a stranger find them for me."

There is no down time with this boy.

And yet, mixed in with all of this, somewhere in there, he's still the same little baby. He's different, too. The seizures and meds have changed who he is. But he's still my Reuben, and he hasn't lost the intensely relational qualities that we and others saw in him from a very early age. He can be screaming at me one moment, and snuggling up with a kiss and his sweet little close-lipped self-satisfied smile the next. But ultimately, even though those are beautiful things, I mostly just love him because he's mine. He's my Reuben. And although our unconscious expectations for him may not be attainable, he is showing us how to delight in many other experiences that we may not have taken the time to notice in a "normal" life.

How can I explain how much I love my Reuben...

...and yet how much I miss my baby?