Thursday, August 22, 2013
For most parents, a child’s birthday is filled with unmitigated joy. For us–for me–it’s more complicated because the day Little Bug was born is also the day he almost died. So we didn’t have unmitigated joy. The overwhelming feelings we had were fear and sadness. Laura followed him to the NICU when he struggling to breathe, sickly pale grey, and it was an hour before he worked UP to turning blue. I didn’t see him for 14 hours and didn’t hold him until 10 days after he was born. So his birthday, in some ways, is like our legal marriage–a significant life event misplaced out of emotional time. Because just as our love and commitment to each other occurred years before our marriage in 2009, that unmitigated birthday joy didn’t happen until 17 days after his birth when we brought him home from the hospital, August 22, 2010, three years ago today.
So each year I’ve had mixed emotions as Little Bug’s birthday approaches. Happiness for sure, joy that he’s still here, but also sadness about his birth and those 17 days that followed. And I hope that as the years go by, and his birthday becomes an exciting event for him, that I’ll be better able to embrace the joy of it, and the pain of his birth will recede in my memory and will not feel so palpable. But I feel a bit robbed that we didn’t get the birth we had hoped for. We’ll never have that memory of him being born and lying on my chest, looking up at us, or holding him for the first time in blissed out joy. Or giving him a bath when he was days old. Or leaving the hospital together shortly after his birth.
Instead, he’s covered in tubes and needles and machines in those first pictures we have of him.
While PPNH is rare, occurring in only .1% (yes, point one percent!) of full term births, about 20% of infants die from the condition. And of the 80% who survive, about 20% of those have long-term physical or developmental disabilities. So it isn’t a small thing. And when I tell people that x, y, or z causes me to be concerned because of his birth (i.e. his torticollis, his speech, etc), and someone says back to me “well, everyone worries about their kid,” all I can think is, “ Did your child almost die at birth? Did your child have a birth experience that caused them to be followed for a year by various specialists? Were told that your kid could have developmental delays related to his birth that could appear years later?” And it’s true that I can’t know how other people experience concern for their kid, but what is true for me is that sometimes it’s just regular concern and I’m not thinking at all of his birth, and sometimes, the kaleidoscope turns, and I’m experiencing it through the lens of the NICU.
Which is not to say that I (we) are not also incredibly grateful: grateful that we lived a mile from a University hospital that could expertly treat his PPHN and that we didn’t go to the community hospital that couldn’t; grateful that we had unending and amazing support from our friends and family who visited us, sat with us, and brought us food–to this day the kindness we experienced still takes my breathe away; grateful that while Little Bug was part of that unlucky .1% who got PPNH, he was not part of the 20% who died and is not yet been part of that other 20% who is permanently disabled; grateful that Little Bug was born in 2010 and not 15 years earlier when the death rate was three times higher. So I’ve come to realize that the incredible challenge (gift?) of a NICU experience is that you get to experience the emotional whiplash of holding incredible pain and gratitude at the same time.
But still, I keep waiting for that moment when the NICU will recede into my memory and I won’t seem him through the lens of “he almost died.” And it’s hard and it pops up when you don’t expect it. Most recently, in the preschool paperwork we just filled out for him which asked for birth complications, serious illnesses and hospitalizations, and a developmental history. So I fear that he will be 16 and refusing to take out the trash, and I will say, “That’s ok sweetie, you were in the NICU.” And I know this isn’t good for him–or me–so I’m working on it. Part of that is writing this blog post. Part of that is thinking about how we want to talk with him about his birth and starting to write his birth story for him. And part of that, I think, is just waiting for the passage of time.
So today for me, August 22nd, and probably all future August 22nds, is the day of unmitigated joy. Three years ago today, we took our baby home and for the first time he slept in his own house and we were a family outside of a medical setting. For sure, the craziness of the NICU followed us home–how would we know he was OK without all of the blinking lights and beeping sounds of the machines?–and we frantically called the NICU nurse after 2 hours to report that he was sleeping, we couldn’t wake him, and he was shivering. She calmly asked what he was wearing, and we said “a diaper” and she said “well, he’s tired and probably would like some clothes or a blanket.” So we put clothes back on him, but stayed up all night to watch him breath. And things got better from there, until, unbelievably, he is a happy, joyful, sweet, sensitive, funny, smart, caring, coordinated three year old. Happy home day sweetheart! Your mamas love you.
Postscript: Little Bug just had his three year doctor appointment and got a clean bill of health! Normal hearing and vision, an ongoing concern due to the medications and treatments he received in the NICU. He’s not anemic (for the first time), his lead level is down (our landlord did some remediation in the fall) and he’s 31 pounds (43%) and 38 inches (64%). For the first time, they measured him standing up instead of lying down and gave him a johnny to wear, which he danced around in–so I guess this means he is officially “not a baby” anymore and is, as he would say, “a big guy.”
Tuesday, July 16, 2013
There is still something so wonderfully whole about him that I wish I could preserve in amber and mail forward in time to him when he is an acned and insecure teenager. ("You haven't broken him--yet," says a friend.) Sure, the snake is in the garden--the world's judgement and his own uncertainty are already whispering in his ear. I can hear it when he puts himself down if he misses his swing playing t-ball in the back yard and says, "I'm not very good at this." Or sometime last month, when he worried out loud about whether he would have friends at preschool.
But mostly he loves himself and thinks he is perfect how he is, down to the scabs he picks on his knees. He really likes having long hair, and mentions this a lot. He sings, "I'm cool" to himself. He wants to be a rock star when he grows up, and is reasonably certain this will happen. He plays air guitar all the time, and peers around corners with a shy, flirty smile, certain that whoever he sees next will smile on him. He's just figured out about numbers above 100, and sometimes calls out from the backseat something like "372!" because he is so impressed with big numbers, and wants to show off all that he knows about them. He is so amazed with himself about potty training progress--"I peed in the potty!" he shouts, jumping up and down and getting real air.
It all comes together when he dances. One day at the beach, when I could only get him half dressed because he likes himself naked, he was dancing in his effortlessly graceful and slightly quirky way. It was wonderfully unselfconscious, like Tom Cruise dancing in his underwear alone in Risky Business. And I watched him, deeply inhabiting his body and his coolness, I felt the thrill of being in the presence of something mystical and sane and whole, as if that's what dancing meant at the beginning of time. There was perfect joy of moving, of knowing you are beautiful, and being in love with the pure sound of the music.
And I thought, for the umpteenth time, of my amazing luck in getting to watch Bug grow.
Wednesday, May 22, 2013
|We talked Bug into a haircut--as long as it was still long hair, he said.|
Last week, Little Bug remarked on the gathering fog ahead of us as we walked in the park. He was just far enough away that I didn't hear him clearly, and I replied, using my favorite of his mis-pronunciations, "Yes, it is getting froggy."
"No, Mama Laura," he corrected me earnestly, taking my hand and looking up at me seriously. "Foggy. It's fog-gy."
My heart broke a little, as he rushed on toward childhood, less and less a baby every day. He is a wonderful child, full of jokes, music, love, and laughter, and I wouldn't want trade anything about him. But they change so much faster than we staid and boring adults that the pace is sometimes hard on me.
Keeping up the blog is good for hanging onto the memories. But I've come to realize why there are so many more baby blogs than children blogs. Babies don't do much, and they sleep a lot. Writing is a good way to spend time with the baby, visiting with recent memories while your little one sleeps. Children are a mile-a-minute, and spending time with them requires you to put the computer down and look at them.
The other day Bug was practicing his typing with my iPad, and I was trying to get him to look at a book with me. "Bug," I read, "Where is the green sheep?"
Without looking up he answered distractedly, but not unkindly. "Keep looking, Mama. You'll find it."
And I heard myself. This is why it's so hard to write when I'm not working. Because that's what I sound like when I am working.
So, a little bit of catch-up:
Sometime in the spring, Bug stopped saying "Pig-e-let." We prompted him for it one too many times, and, smart guy that he is, he realized he was a source of amusement. Although he laughs at himself more easily than I do, that was a small affront to his dignity, and he picked up that the rest of us were saying "Piglet."
But it didn't lessen how much he loved the little pink guy, whom he carried everywhere.
We were taking a plane home from San Francisco (his new favorite place) on the day of the Boston Marathon bombing, and it heightened everybody's anxiety. Little Bug was making his way through security (somewhat more smoothly than he had last fall in Puerto Rico, when he took off through the maze of machines, and for some reason the TSA folks let us chase him down without getting too wound up about it). We had talked about what was going to happen, and he was preparing to let Jennifer carry him through the machine with Piglet in his arms.
A TSA officer, though, insisted that the stuffed guy was going through the x-ray tunnel.
Bug burst into tears as his best friend disappeared.
As we tried to assemble stroller, shoes, belts, computers, and diaper bag, Little Bag stood at the end of the x-ray machine and watched for Piglet, fiercely determined and unblinking.
When he could reach him, he gathered Piglet in his arms and took off at a dead run, determined to escape with his friend.
If I'm ever unjustly detained by unreasonable security officials, Bug is the stalwart, brave guy I want at my side.
(And if I ever see an adult in sagging pants and socks running across an airport after a toddler with a stuffed animal, I'll remember having been there...)
March: On the moral order of the universe...
"Mama Laura, are goats naughty, or polite?" asked Bug as we strolled past them at the little zoo nearby.
I was nearly stumped, which happens rather a lot. "Hmm. I guess they are full of mischief, and eat laundry and all sorts of things they shouldn't, so I'd have to say naughty."
"What about peacocks? Are they naughty or polite?"
"Well...polite I suppose. I've never heard of them doing anything mean, and they are delightful and beautiful when they are free to wander."
Trying to guess what was behind the questions, I asked, "Bug, are you naughty or polite?"
"Oh, naughty!" he said with a smile full of mischief. And while he enjoyed my subsequent praise of his good qualities, he didn't change his position.
The next day, he was on the swings at the park and we watched a girl, about 7, have a full-throated tantrum about going home.
Bug: "Mama, what's wrong with that girl?"
me: "I guess she's not ready to leave the park, and is having a lot of feelings about it." We do a few more rounds of this, as I name what her feelings might be: angry, sad, disappointed, maybe also hungry and tired, which make everything worse. It's clear I'm not getting to the heart of the matter in his mind.
"But what's wrong with her?"
"She's having a fit because she's mad at her mom." Slightly moralizing, I add, "You know, you almost never have tantrums. If something doesn't go the way you hoped, you usually just say, 'Oh well.'"
"Yeah, but I throw my dinner on the floor."
That night, he did his one truly rotten behavior, something that had all but faded away: he flung his dinner plate, full of food, at the wall. "Mama, that was naughty!"
The moral order of the universe was restored. The pressure to be polite-guy was off his shoulders. Our Bug could be naughty if he liked.
February: If you give a boy a truck...
It's February, and I'm teaching the gender-disparities in early childhood literature in my Biology of Difference class. We're reading Lise Eliot in Pink Brain, Blue Brain and Anne Fausto-Sterling in Sex/Gender, who argue that the sex differences in brains and perception in children under 2 are small, the studies that show them have been poorly replicated, and the differences themselves are highly malleable. Furthermore, they are mostly statistical artifacts, in the sense that there is more difference among boys and among girls than between the two groups, so you have to massage the data to even produce them. By the time children are two, though, they suggest that we have often produced significant differences in gendered play, likes and dislikes. The class had been reading and watching some un-sourced and highly exaggerated popular media representations of the scientific literature on these slight differences, including how these (supposedly biological) differences are amplified in later childhood. "If you give a girl trucks," says a media figure, commenting on how girls are relational, boys competitive and individualistic, "she'll have Mommy trucks and baby trucks." (Not so much, say the data, but never mind).
The next morning, I am playing with Little Bug and dragging my feet about going to work. He is baking a cake in his play oven, because, he says, we're going to celebrate his birthday (6 months early, but who cares). He takes a pot stuffed with vegetables out of the oven (it's a carrot cake), and carefully lays out plates. Then he pulls his trucks around in a circle, and we all sing happy birthday.
If you give a boy trucks, they'll have a party.
January: Proud, Proud, Proud
On January 12, shortly after 9 pm, in one heart-stopping and unforgettable moment, Little Bug leaned out over the landing between the second and first floors of our house and fell headlong down the stairs. He bounced off his face before Jennifer caught him, stopping his momentum before he broke his legs, which were tangled in the posts under the bannister. He came up bleeding and sobbing. We didn't know it until we got to the ER, but he had knocked out two teeth.
After we'd been at the hospital about 20 minutes, Bug had stopped crying and we were in a room. Jennifer hadn't put him down since we got there except briefly to have him stand on a scale. A nurse came by and asked, "Are we sure he can walk?" This was a good question, since we knew he'd gotten both legs caught. We asked him if his legs hurt and he said no. Jennifer put him down and we asked him to walk to the bed. His legs wobbled crazily, he staggered. I felt dizzy. He clearly had neurological damage, or maybe something was horribly broken. "Pick him up!" I cried, terribly upset.
Jennifer put him on the bed. The nurse examined him--head, neck, chest, abdomen. Amazingly, except for the blood all over his face, not a mark on him. She moved his legs, then asked him to press her with them. They were strong as ever.
"Were you just joking?" asked the nurse.
And then our boy, looking like a vampire, drooling blood, grinned a face-splitting grin. "I played a trick on you!" he said, laughing out loud.
When the doctor came, he repeated the performance, which worked almost as well the second time, because his mamas were hysterical. The doc was so floored by the whole thing that he collected residents and nurses and came back. Bug did it again.
A few days later, as we tried to adjust to his new smile and swollen face (and persuade ourselves that we were not the absolute worst parents on earth), we asked Little Bug how he was feeling about his new look.
"I can't tell you, I have to sing it," he said. And he grabbed his ukelele, and sang, "Proud, proud, proud, proud."
I grabbed my camera. And cried.
Monday, May 13, 2013
Today, Little Bug and I went to the Holyoke Children's Museum again, and had a great time. He slid down the slide, built ramps (large and small), sent boats through the water...
At any rate, toward the end of our trip, we wound up in the tot area, and he began playing with a four-year old girl - they were both jumping onto mats and doing somersaults, and he was having a blast. He was miming her actions and just being adorable, per usual.
At one point, she said, "Oh, can she do a jump like this?"
And I smiled and said, "I'm not sure, you should ask him. Hey Bug, can you do a jump like that?"
And he responded, "YEAH!"
So the girl shakes her head and vehemently replies, "Oh, NO. She's not a boy. She is a she." I politely corrected her, but she maintained that, indeed, "she" was a "she." She sputtered, "B-but...she..he...she has long hair!!" I, again, gently explained that boys could have long hair, too.
Finally, she went straight to the source, and faced him, demanding, "Are you a boy or a girl?"
Little Bug, caught off guard, stammered, "I'm a...gir...boy! I'm a boy."
She corrected him, saying, "No, you're not. You're a GIRL."
Bug said firmly, "No. I'm a boy." They went back and forth for a few rounds, until our little guy, clearly exasperated and like, "Why the hell can't we just keep jumping and somersaulting? Why do we have to harping on this?" affirmed his gender for the umpteenth time and looked at me for backup.
I said, "You're right, buddy. You're a boy." Trying to steer the conversation away from Bug, I smiled and teasingly said to her, "Are YOU a boy?"
She looked at me like I was a moron and grabbed her earlobes, retorting, "No..I'm a girl...I have earrings, SEE?!" I nodded solemnly and thought it was a bad time to explain to her who George Michael was. (Oh - and then she points at us both and goes, "She's a girl, and you're a girl." Poor thing...I then had to explain that we were both boys. I thought she was going to explode with frustration). The upshot was that she finally walked away from us, settled into the rocking chair and surveyed us from afar, before returning and admitting, "Okay, you're right. I see now. He's a boy." and then: "Let's keep jumping!"
I'm not sure what she "saw" that convinced her to finally accept Little Bug's gender, but I'd imagine it had something to do with the fact that she was sick of debating and really just wanted to keep playing with her new friend ; )
When we left, I scooped Bug up, gave him a huge hug and kiss and asked him if he was feeling okay and if he'd had a good time. His reply? "YEAH!" and then, "Kee-nan, I'm hungry. What kind of crackers you have for me?"
I stopped worrying.
Something really bad happened to Bug last weekend. I let him jump off a diving board in a friend's arms, and came up choking and crying. He had water up his nose and he swallowed it, an awful feeling I remember from my own childhood diving board accidents. It was a parenting mistake of the first order, mine. I held him in my arms as he cried out the misery of it, and then sat him on the side of the pool.
After less than a minute, he sneezed water all over my head, which made him laugh. As I marveled at his powers of resilience, I encouraged him to swim toward the end of the pool where our stuff was, since he wanted to and I thought it might do him good to have his last memory before we left be swimming, instead of that awful drowning feeling. He swam some, and paused to barf up the water he had swallowed. I called it "upchuck," which he thought was absolutely hilarious. I thanked what gods there be for his good humor and resilience, and wished, not for the first time, that I was as brave as he is.
I will not recover as quickly from the awful tragedy in Connecticut. Two family friends lost children in Newtown, and a niece remembers the principal of Sandy Hook elementary from when she was her high school principal in Danbury. This is the third mass shooting where I have lost people I knew, or been one person removed from. The first was a 2002 shooting at the University of Arizona, where I was teaching. An angry student killed three professors before killing himself. Because his body was not immediately found, however, we all spent hours believing there was a gunman loose on campus. The second shooting, the one that included Gabriel Giffords—well, everyone in Tucson knew someone. These tragedies feel cumulative, each one echoing the other down the corridor of memory. Perhaps that's external, too, as the media and even the gunmen quote the others.
After the hard, horrible day of absorbing the scope of the tragedy in Connecticut (and making sure Bug didn’t hear a word of it; there are some things I will try to protect him from), we took our little one to see Christmas lights at a nearby park. And as trite as it all was, including Santa and Mrs. Claus, there was comfort in its ordinariness, and his awe at the beauty of it. And so tonight I hold my baby close and mourn for all of us, for every parent who cannot hold their child, for all these guns we have set loose on the world, from Egypt to South Africa to Haiti to Guatemala and Mexico, and no less on ourselves.