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.
About a month ago, author David Rakoff died after his second fight with cancer. He was only 47. You may not know his name, but anyone who listens to This American Life will recognize his voice. As I was driving home from work the day after his death, I listened to an interview taped after his diagnosis. Knowing his fate, he was asked about the thought I think passes through the minds of most who suffer some tragedy: Why me? Why should a man so young, so talented, be doomed to be taken from a world where that talent is rare?
His simple answer rang true: Why not me? "The universe is anarchic and doesn't care about us," he said, "and unfortunately, there's no greater rhyme or reason as to why it would be me. And since there is no answer as to why me, it's not a question I feel really entitled to ask."
While Asher was in NICU, responding to my own pitiable mind with "Why not me?" really helped. I saw that believing the world was treating me unfairly required also believing that someone else deserved such treatment more than me. Inserting that one word - "not" - shook me out of my state and allowed me to carry on, to be present in those moments. It's a trick I've since suggested to clients and discussed with friends. Recently, I really hoped it would help one friend in particular.
This friend's baby girl was born under somewhat similar circumstances to Asher. She received the cooling mat treatment, and when I had the honor of meeting her, she reminded me of my son in those early days. Seeing her gave me hope, and I tried to pass that feeling on to those friends. I also tried to pass on some of what I'd learned to the new parents, including how I re-framed my own self-pity.
Last week, this baby girl passed away. Her parents' pain morphed from something I could relate to into a mere concept, one beyond my ability to understand, let alone write about here.
Among the waves of my internal responses came a return of my mind's attempts to apply fairness and order to the universe. Only, this time, the question had changed into something I've found far more impenetrable: "Why them, not me?"
Logically, I think the resolution to this second question is contained somewhere in the resolution to the first. Yet, as I'm feeling so sad for them, that answer is far from satisfying. It feels small and cold, and while my head still believes it to be true and thinks it can help sometimes, my heart regrets even suggesting it to a friend who's now mourning.
*****
Further complicating the nest of emotions surrounding the past few weeks is how well Asher is doing. After we got the news about our friends' daughter, Marissa and I sat quietly in our living room. Asher was between us, lying back-down on his play mat. Processing the tragedy, I was staring off into nothing when I saw a twist of movement in the corner of my eye. Asher was now on his stomach. An important developmental milestone, rolling had been a physical therapy goal of his for a while, and he had just done it on his own for the first time. Marissa and I looked at each other, shocked, before the bittersweet irony of the moment set in.
We've gotten great encouragement from his physical therapist, who's seemed very impressed with most everything she sees. Rolling is easier from stomach to back, happening twice today in quick succession, though back-to-stomach has only happened a few times. He holds his head up pretty well, even if he has his drunken bobblehead moments. Some of these things may not be exactly on time or done perfectly, but if you put him in a line-up with other four-month old babies, you'd be hard pressed to pick out the one with the traumatic start to life.
And, of course, he's as cute as a baby's ever been.
Last week, Grammy and Pappy White came for a week-long visit...
He laughs a lot, especially when we play and sing our songs, but he's also starting to laugh on his own at things he thinks are funny.
Hopefully I'm not being naive, but the way Asher takes in and reacts to the world makes me really optimistic that he'll be just fine intellectually. Quick smiles at songs we sing regularly show me he remembers them. He can figure out how to do something, such as work a toy or how to roll over, then quickly repeat what he's just learned to do. Mostly, though, there's just a look in his eye, an alertness that says he's soaking in and learning from his environment. Even if he is just a little behind physically, my fear of not being able to have an intellectual relationship with my son seems like a distant memory.
I'll finish up this post with something Asher might hate me for when he gets to a certain age. We have a nightly routine that starts with a bath, which has become daddy time. Splashing might be his favorite thing in the world to do, and as you can see, he's very good at it. Maybe we're training the next Michael Phelps.
To Future Asher (and his girlfriends I'll be showing this to in 16 years or so): I wish YouTube would let me add one of those blue dots over your privates. But only because I think that'd be even funnier.
Marissa's grad school roommate, Amber, flew in for a long visit last week, all the way from Chicago. The day she arrived, Brad came over for a family dinner, and during dinner prep began telling me about a hiking trip he and Thompson were planning for the next day. Following the Black Mountain Crest north from Mt. Mitchell, it's a beautiful, rugged trail that I've only done once for my "bachelor party". As I'd resigned myself to a life devoid of backpacking until at least the fall, and maybe next year, I listened with a "sounds great, have fun" attitude.
It was then that my wife, mother of a demanding two-month old baby, piped up and said "That sounds fun, Zach, you should go!" Confused, my jaw hung lower and lower with each second that passed without a punch-line. Granted, Amber would be a big help, but a friend is not a co-parent. When I eventuallyaccepted that she was serious, I quickly started planning the trip with Brad before she could change her mind.
What woman does that? Marissa, that's who. The same woman whose boundless energy and patience leaves me in the dust day after day. "Transformation" is too strong a word for what motherhood has done to her, because you could always see a strong mother in her. Back in college, after the first extended period of time I spent with her, I remember saying to a friend, "I'm not sure if I could ever date Marissa, but I'd want her to raise my kids." (Turns out I could date her, too.) Now, it's as if she's the same person, but with a new button, one that only Asher can push, and doing so injects her with the energy, drive, and focus she needs to be an amazing mom.
An example of her motherly predisposition: As a young child, Marissa says that, in addition to being fiercely defensive of her baby dolls, she would "breastfeed" them. Only when I think about this fact do I get truly disappointed that breastfeeding hasn't worked with Asher. It's unfair that someone with such a strong drive to mother is denied that most mothering of acts. Yet that's her lot, and on the whole, it feels normal now. Life would be easier with breastfeeding, but we've managed to incorporate pumps and bottles into a routine that works.
The biggest factor making this and every other aspect of our lives easier is a generous gift from Asher, one that, I'll warn, might drive you parents to throw the nearest blunt object at your computer monitor. Most nights lately, Asher sleeps from sundown to sunup. I sleep all night, and Marissa gets up once to pump. It's amazing. He's also chilling out, having longer stretches of calmly absorbing the world, and mostly limiting his "happy hour" to right before dusk. More and more smiles are appearing, and in the past few days, our favorite Woody Guthrie song has even gotten some quasi-laughs.
Clearly, all this helps daddy's sanity, but it's also great for his brain. Sleep is the best time for his brain to repair any possible damage, while being calm mean he can learn, and maybe get in some homework from his physical therapist.
Most of what we work on for PT is just encouraging him to do normal baby stuff using both arms and legs. The primary concern is still about cerebral palsy and whether or not he'll have full use of his right arm and leg. We'll put him on a ball on his stomach and roll him around, encouraging him to lift up his head and use both his arms to stabilize. Or, we'll try to get him to grab on to a toy and track it with his eyes.
His favorite, though, is his funhouse mirror with toys that dangle in his face when you hold it over him. He's mesmerized by his own reflection, sometimes staring at it for half an hour while batting and grabbing at the toys. It's baby catnip, but it's also good for his brain.
At first, his right hand would stay closed much of the time, letting his left do most exploring of toys, my face, or whatever was in front of him. More and more, though, his right hand joins the party. If you lay him on his stomach, you can tell his left arm is much better at holding up his body than his right. He leans on his left elbow, while his right is often stubbornly sandwiched beneath him. Still, we feel like he's made a lot of progress on this, and see no reason he can't keep it up.
*****
A couple weeks ago, we went back to the NICU. A social worker there called us about a family whose baby, Zander, had gone through something similar to Asher, and she asked us to meet with them for peer support. On our way there, I remember almost looking forward to seeing the unit again, like some kind of reunion. Being there, though, I was reminded of how easy it is to let your mind slip back into negativity. Asher started wailing and couldn't stay in the room with Zander, so I paced the halls in mostly unsuccessful attempts to calm him. I noticed that, after being in the NICU and hearing Zander's story, Asher's cries made me worry like I did after our team meeting from hell. Was he crying because of his brain injury? Because he was in pain? I wanted to go home. The NICU saved my son's life, and maybe his brain, but there, he is sick. At home, he's just my son.
I wanted Zander and his family to go home, too. Their mourning felt deep, and I wanted them to have a chance to move on with their lives, the way we have. Later that week, they got that chance. If you'd like to help Zander, Hope and Ray, his grandma is trying to raise funds for an expensive trip south from New York so that she can meet her grandson. You can donate by clicking here.
