Cheeseburgers in Paradise

Some of the most creative people through history have been those with emotional problems.  Famous artists from Van Gogh to Bon Jovi have struggled, while at the same time producing great bodies of work.  It can be hard to see how such a person can have the energy or the passion to be so creative.  Through writing about Asher, I've come to understand how my own fear can fuel creativity.

I haven't written in months in part because that fuel is nearly gone.  People asked lots of questions about the blog during the holidays, many who I'd never met, and I even made some promises to post that I didn't keep.  I can be quick to forget and underestimate how many people out there care about him and deserve updates.  For Asher, no news has been good news.  There are times when I see something in Asher that makes me wonder if he'll be okay, or how he might be different if the birth had gone as planned.  When he's fifteen and comes home with bad grades and his hair dyed blue, I might have the same fleeting thought.  It's the same fear most parents have about their kids at some point, just filtered through the lens of his rough start.

In October, Asher had a six-month check-up with his neurologist.  The doctor who'd confirmed our optimism months before did so again.  He had seen some possible signs then of early cerebral palsy, but at this check up told us that any such signs were now drastically decreased.  He doesn't see the need to see Asher again until he's a year old.  I wouldn't be surprised if that's the last time he sees the neurologist.

Asher has been doing physical therapy twice a week for most of his life now.  I'm usually at work for these appointments, but had the chance to catch the end of one one New Year's Eve.  His physical therapist feels like Asher might be a month or two behind physically.  If this were a political poll, a month or two seems within the margin of error to me.  Much like the neurologist, his PT sees Asher "closing the gap" on any deficits that were there when we started.  I've heard her say multiple times that she would not have guessed Asher would be where he is now given the initial report she read.

Most importantly to me, the therapist has also told Marissa in a genuine and strong way that she thinks he's a smart boy.  Like everything else, there's no guarantee of what his IQ will be.  But I've always seen curiosity in his eyes.  He constantly wants to observe and soak in the world.  When you hold him, he won't let you do so chest to chest, facing in.  He'll push and fight to turn around and face out so he can get a better view of the show.

Learning is happening more and more quickly.  A toy that he can't grasp one morning will be no problem for him by the afternoon.  In an instant, it seems he can acquire a new skill, like holding his own bottle on New Year's morning,

Or sitting up like a boss,

Or the day he started crawling out of nowhere,

Or STANDING.

Or mastering the timeless art of seduction, 

Or flying Grandpa's airplane.  Yeah, that was impressive.  

Mom was a little nervous, if you couldn't tell.

Of all the feelings I've had so far toward Asher, maybe the most unexpected has been pride.  I'd always associated "pride" in your children with the things they do at older ages: riding a bike, scoring a goal, learning their ABCs.  It never crossed my mind that I'd be proud of a baby.  But watching him hold his bottle for the first time, that feeling dominated me.  Not coincidentally, it also seemed to be Asher's initial tiny step toward independence.  For the first time, he didn't need me.  Looking up at me, his eyes said, "I got this."

*****

Our boy is eight months old now, and since I've written last, he's had his first Halloween,

Thanksgiving,

Chanukah,

and Christmas.

Thanksgiving was a time I couldn't help but reflect on where we had started eight months ago.  Clearly, we have a lot to be thankful for.  Then, there's the whole food aspect of the holiday, which happened to coincide with Asher beginning to eat solids.

I thought a lot about the terrible meeting we sat through that first week when we were told Asher would be "moderately to severely" disabled.  A large portion of the meeting was spent discussing the possibility that we'd soon need to perform surgery to install a feeding tube into our baby's stomach, since his brain might not handle the complex task of swallowing.  Doctors tried to downplay the significance of this, talking about how easy, convenient, and portable modern G-tubes are.  

Luckily, we could count on Marissa's mom to lighten the mood, if unintentionally and only for a second.      We were asking about what you "feed" a child through a G-tube, and the doctors were saying something about formulas or powdered dietary supplements.  To this, Marissa's mom asked, "Well what should we do if he asks for a cheeseburger?"  The doctors laughed and replied, "If he asks for a cheeseburger, give him one."  What they were really saying was this:  if Asher had the intelligence and ability required to crave food, we should be thankful.

Someday soon, my son will eat a cheeseburger.