I woke up around 7:30 this morning and wondered what I was doing exactly a year ago. The NICU's worn, salmon colored recliner came to mind, a seat I'd get very comfortable with over those next three weeks. Disorientation. Freezing cold, and confusion about whether or not it was me or the room. The way the doctor looked me in the eye and said, "This is serious."
Many dads cite the day their child is born as the best of their lives. I can feel cheated when I think about this, since Asher's birthday was probably the worst of mine. We missed that moment when we were supposed to say hello, gazing into each others' eyes. Instead of his mom's embrace, Asher was greeted with tubes, needles, wires, narcotics and three days of a cold bed. Instead of looking forward to running, playing, and laughing with my son, I saw visions of a future that felt strange and unfair.
Since then, and because of those tubes, each day has been a little better and more hopeful than the one before. With that, I've been able to consider the possibility that Asher's ordeal has somehow added up to be a good thing. Of course, it's not as simple as adding up adding up debits and credits to determine if we're in the black or red. But, because of what happened, Asher, Marissa, and I have received so much that we otherwise might not have gotten. He's had excellent care from his doctors and physical therapist, and we've rarely been left wondering, as most parents do, "Is this normal?". We've learned so much from these people that can make us better parents to any child, disabled or not. I also take that much more joy in every new thing he does, whether it's as big as standing on his own or as small as moving his arm just a little more smoothly.
Most of all, I have to wonder if there's ever been a kid loved by the world quite like Asher. The faces of people I've never met will light up when they talk about him. This blog has been viewed over 50,000 times, sometimes by people on the other side of the world. Yesterday, his birthday party was the closest thing to a frat party I've been to in about ten years. Friends and admirers crammed themselves into our house (thanks to the rain) to help us celebrate. Neither I nor Riss were quite sure where he was much of the time, but we knew he was in good hands. For all I know, he could have been crowd surfing through the house.
The party was bumpin. Tough to even get in the door.
Yes, that's a Brown Bear, Brown Bear shirt,
made by Grammy White
A boy and his Maw
Mom killed it on the birthday theme
(Check this post in a couple weeks for more birthday pictures. Marissa had the presence of mind to get a great photographer.)
A few weeks ago, Asher had his one-year check-in with his neurologist. Barring something unforeseen like a seizure, the doctor saw no reason why Asher needed to come back for another appointment. Worst case, he said, it might be another year before he walks (though I, Riss and his physical therapist doubt this). We're continuing physical therapy, which is down to once a week now. Asher's still about two months behind in some things, such as crawling (he typed as Asher crawled all over the house). And the neurologist cautioned that intelligence really can't be measured until age five.
Yet he's doing so, so well. Crawling is happening with ease now, though not on hands and knees just yet. He's been all over the place for a couple weeks now, and not only to get a toy from the other side of the room, but to explore the whole house. Standing is his favorite thing in the world to do, and every day pulling up gets easier and faster. He loves to walk laps around his Pack N Play, and kindly lets us get stuff done while he does. He's still HUGE. This morning, he put on a two-year old's onesie, and it fit perfectly. His favorite book (and theme for a birthday party - see hat above) is Brown Bear, Brown Bear, What Do You See? He looks at me and says "da-da-da-da-da".
Edit: In the time it took me to write this post, he learned to clap his hands, and now won't stop.
From April 29th, 2012 until today, I've looked at my son and seen so many more reasons for hope than against it. I feel it in my gut and heart, which for a year now haven't led me astray.
It took him about a day at the beach to figure out the sand wasn't for eating
Testing the water
The boy loves lemons
He also loved trying to catch the wind in his mouth
He thinks it's funny to press his face against the mesh. He's right, of course.
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 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.
