Wednesday, April 23, 2014

Highly Specialized Mommy Wars

Because generic mommy wars are never enough, AMIRIGHT?!?

I went off and T.witter for Lent. After 40 days, I signed back into FB. My FB feed was littered with posts from a support group for parents of children who have been diagnosed with craniosynostosis. At first, I just scrolled past them, because people do tend to post quite a bit in that group. I kept scrolling until my eye hit on one word—


Okay, I said to myself. What are we calling barbaric? So I moseyed over to the page, and lo! Some mom started a “conversation” by saying (essentially) “Well, no one has really given me any flak for my decision, but I feel like people MIGHT give me flak for my decision to use the endoscopic method, and how do you deal with being judged by all those other horrible people who got CVR and want to feel smug about it?”

This is where a quick step back is necessary. There are multiple methods to deal with craniosynostosis. One of the most commonly used ways is CVR (cranial vault reconstruction). That’s what Lis had. It is the “most” invasive, though to some extent, ALL of these surgeries are really invasive, because you are dealing with the skull and the brain. CVR is the most extensive, but it is the most widely practiced, and has been in use in one iteration or another for at least 50 years, if not more. The endoscopic method is newer, and somewhat less invasive. It has great potential in a certain category of cases and babies, meaning certain types of craniosynostosis and babies of certain ages and stages of growth and development. It also requires the use of a helmet for awhile after the surgery.

So! Back to Ye Olde FB. I sat there for a moment, stunned. I mean I paraphrased her words, but really, it wasn’t just an attitude that I was picking up on—it was her black and white words. She was posting something just to start an argument and be all “poor me” when she admitted in the next breath that no one had said a bad word to her about her choice.

Of course, people chimed in and basically said, “Nope. We made the right choice, it’s such an individual choice, based on your own circumstances, no one would dare judge, etc.” I felt better. That is, until another woman chimed in and said she was so happy that she had gotten the endoscopic method for her child, because CVR was BARBARIC and her doctor agreed that it was a BARBARIC procedure, and how could any GOOD parent do that to his or her child, etc.

Cue me, sitting there again, stunned again. Really? This is what we do in a support group? We’ve all been through a shared terrible experience. We all know what it is to see our babies with eyes swollen shut for days, and to hear their cries change and become more desperate and high pitched because of fear and pain. We all nod knowingly when someone talks about clammy hands and a racing heart whenever she enters a hospital, any hospital. We offer alternatives to plain old hand sanitizer, because we can’t stand the smell of the stuff that they used in the hospital (citrus hand sanitizer FTW!) We share each other’s joy when it goes well, when our babies begin rolling or crawling, and we share each other’s sorrows when we find out that it was too late, and damage was done, or another surgery is necessary.

Some people jumped in and said just that. Others pointed out that using the word barbaric for an acceptable and highly effective medical procedure that saves lives is wrong, rude, and offensive. I said nothing. I just kept looking at the word barbaric.

Oh, I could show you pictures. I have terrible pictures. Pictures of Lis when she looks nothing like herself; she is so swollen that her face looks like it was painted onto a balloon. I have pictures of her incision, and it’s brutal: dark, black slashes weaving in and out of her skin, fifty of them, and those were only the visible ones. Let’s not forget the dark blue antenna on top of her head—where the non-dissolvable stitches were tied off. Why non-dissolvable stitches, you ask, when all the rest were dissolvable? Well, that’s because her condition had drastically worsened between the scan and the surgery. They had to move her skull so far apart they couldn’t stretch her skin back over all the way. Pieces were grafted on, and new skin had to grow, so we got to take Lis home with a hole in head.

Oh, yes, I could show you pictures that would make your stomach turn and your tears fall.

That doesn’t mean it’s barbaric, though. Barbaric is savagely cruel; exceedingly brutal; primitive; unsophisticated. There is nothing savage or cruel about saving a life of a child, even if the methods have to be extreme. It’s not brutal, which implies savagery or violence. I suppose, if you’re going to be one of those people that argues that all surgery is violence upon the body, then, well. I welcome to you the century that we live in, and I invite you to invent the first medical tricorder.

If I impute all charity possible to this woman, then what she must have meant instead of barbaric was primitive. Maybe I can see where she was going if I tilt my head and look at it like this: CVR is a primitive solution to the lack of skull growth, because it cuts the entire skulls apart and moves it apart. Endoscopic is not primitive because does not requires cutting the entire skull, targets the problem area, and uses a helmet to mold the skull more naturally. Maybe that’s what she meant. While I think she’s wrong, I think that is more charitable and less offensive, and certainly less mommy-war-ish.

CVR is well practiced and effective. Because it’s been done effectively for so many years, many, if not all, of the “trouble spots” with the surgery have been identified. For example, when doctors were first doing CVR surgeries, the main thing from which children died was blood loss. Doctors then made it standard practice to immediately begin a blood transfusion as soon as the surgery started, thereby eliminating a number of deaths. There are many other items such as this one to complement this view; too many to list.

The endoscopic method is newer, and results have not been tracked over a longer period of time. Depending on which source of data to which you turn, it looks likely that there is a higher risk of a second surgery with the endoscopic method. I think this method has amazing potential; I also think this method will likely become the standard of care for certain types of craniosynostosis in a certain subset of children. However, there are some children for whom this method will not work—Lis, for example. Lis was on the cusp of not being a candidate for the endoscopic method because she was four months old when diagnosed. We would have had to have the surgery IMMEDIATELY. This was not feasible for a variety of reasons (fever, insurance, parental shock). By the time Lis was cleared for surgery, she was six months old, and was too old for the endoscopic method in her condition. Even if we had done the endoscopic method at that point, we would most certainly be facing a second surgery because of how much her condition had worsened.

I, personally, was uncomfortable with the endoscopic method for two other reasons. First, I felt like I was being sold something by a salesman. The people and doctors touting the method were just too…too. I don’t know how to explain it, but I felt like I was being sold on something rather than given data and medical opinions. Second, I was extremely uncomfortable with the idea of a technician shaping my child’s head instead of a doctor, which would have happened with a helmet. NOTE: All that being said, this was my feelings within the context of our daughter’s care. If, at any point while reading this, you find yourself saying But the endoscopic method is XYZ/better/safer/cooler, I invite you to reread above where I mention that I think it is fantastic for certain cases and will likely become the go-to method for those types of cases. Just not ours. I ask you to extend the same courtesy to me.

Don’t we, as parents, have enough to deal with without creating drama? Especially as parents of children who have had traumatic surgery—don’t we have enough on our plates? Don’t we get enough judgment from outside sources on our choices, whether it's everyday choices like McDonalds or daycare, or extraordinary choices, like medical treatment? When I took Lis out into the world the first few weeks after surgery, I got so many looks from so many people—horrified, scared, pitying, disgusted. Some people actually stopped me and asked, “What did you do to your baby?”

In the face of this, I thought that a support group for craniosynostosis parents would be a safe place, where no one would ask me a question like that one; yet, there was, in black and white, from another parent who should have had the same sensibility that I do: What did you do to your baby?

I should have known better. And my answer is, and will always be: I saved my baby, just like you saved yours. 

Friday, April 18, 2014

Let It Goooooo

One of the things Vor did with Lis while I was gone this past weekend was to buy Frozen and watch it with her, his friend J, and J's two kids.

I promptly made the mistake of letting Lis watch the music scene where the princess sings "Let It Go."

It is STUCK in my HEAD. I've never even watched the movie--just that one scene, and it is stuck there, forever. Ugh.

Wednesday, April 16, 2014

Kinesthetic Memory

On two separate occasions, I brought my bathing suit to the Y, then changed my mind and just worked out instead. If that doesn’t give you an idea of the conflict within myself, I don’t know what will.

For the most part, I can bounce along in life, and as long as I do something well, I am satisfied. I know that isn’t the case with swimming. It awakens the competitive beast within me, and while it’s an impressive thing to have, it’s also a bitch to harness.

This morning, I dyed my husband’s hair grey—

(Obviously, I am not just going to drop that in without an explanation, since it’s awesome. He is participating in one of this state’s law schools IP moot court competitive, and he is supposed to be a 50 year old expert. He and a partner were talking about it, and decided that Vor should actually look the part, the 50 year old part, that is. So, I got out the baby powder for a trial run this morning, and wiped it all over his hair. Yes. I can actually say I made my husband’s hair turn grey.)

(Also, I am a grey person, not a gray person. I think there is even a difference in the way I pronounce with when I vary between the two words. Are you a grey, or a gray?)

(I digress)

—I dyed my husband’s hair grey, and shooed him out the door to work. “Aren’t you going to work out today?” He asks, as I am containing the tiny airplanes that I brought back from Tucson. Instead of verbally answering him, I pull a Superman. I’m wearing a wrap v neck shirt, so I flash him my bathing suit, and he cracks up. He leaves, and I gather up Lis for school.

Then, before I know it, I am standing in the Y, in my bathing suit, gazing at the pool. It’s been ages since I put a cap on, but my hands remember the motions, and It is smoothly pulled over my too-long hair, lose ends easily captured. My goggles—Speedo Vanquishers, my personal favorite—slide easily on, no fogging, and before I can stop myself, I slide underwater. No going back. I’m back in, in a way I haven’t been in ten years.

My hands reach down to my hip, right side, to touch my nose clips. I’m startled when I find them missing, then I laugh to myself. Old habits don’t die hard. They just never die at all. I didn’t bring my nose clips with me this time. This is just to swim laps.

I swim laps for a half hour. Although my body moves in exactly the same way as it always did—I have great kinesthetic memory—I tell it lacks the power, grace, and flexibility. My arms are tired after only a half hour; I used to swim laps for three hours straight, no stopping. I look down at the bottom of the pool as I swim, watching the light from the windows dance around. I wish there was a mirror on the bottom of the pool so that I could check my form, but there isn’t. I’ll just have to rely on my memory.

After my half hour is up, I start to cool down. Instead of just kicking and paddling, my brain says, why not? and I kick into my basic sculls, four laps, one lap of each. Since that felt good, I do laps of fast eggbeatering, and I feel like I’m going to die. Definitely not as strong as I used to be. But even still, I keep my shoulders well above water the entire time, and I can see the lifeguard watching me, her head cocked to the side, wondering how it looks like I am walking on the bottom in the deep end. Oh, yes.

I’m tempted to go under water and see how well I keep my legs and straight, but that’s exactly why I didn’t bring the nose clips.

Old habits, you know. 

Tuesday, April 15, 2014

Monday, April 14, 2014

Jet Plane(s)

My brother deployed last June/July (I say this as a slash, because part of the deployment was almost a month stateside, away from his family, no visits allowed, doing what he called his James Bond training). He'll be home this July.

My family, and my SIL's family has taken turns visiting her and the kids to break up the deployment. This past weekend was my turn, so I went out to Tucson.

Thunderbirds, flying formation! I also have crazy awesome video of them flying directly overhead, as well as A-10s (my favorite!) flying formation. There was also the Red Bull helicopter, which is the only specialized designed acrobatic helicopter (I could be wrong about the only part, but I'm pretty sure I'm not). I almost had a heart attack watching it. It's not my first rodeo when it comes to airshows, and as the daughter of a helicopter pilot, and a frequent flier in one, I generally know what they can and can't do. When I saw that helicopter start to go straight up to do a loop, and go FREAKING upside down, I almost screamed. Helicopters don't do that! Except this one, of course. It was amazing. I actually got to meet up with some friends I had not seen since 2010. My friend S was watching with me, and remarked, "I'm pretty sure that's how you crash a helicopter. Not fly it." Red Bull apparently really does give you wings.

Tucson is one of my top three or four favorite places in the US. Beautiful, warm (hot), sunny, mountains, dry, glorious place. I spent some QT with my nieces and nephew and SIL on their porch, under this tree, looking at the mountains. I also have lots of embarrassing pictures and video of me and the kids, but those are not blog fodder. I love this place, and I always hate to leave it. A long weekend is too short to spend here, and certainly too short to spend with family, but it will have to do for now. 

We come back and Christmas, this time with Vor and Lis. My entire family will be here--all my siblings, all their kids, my MIL, and probably's even Vor's sister. It will be amazing. We're planning a huge family photo in the desert.

As much as I loved my time, and as much as I hate to leave my SIL and the kids and the desert, I am desperate to get home to my husband and my baby. I miss Vor and his humor and his kisses and his quirks. I miss Lis and her still baby-ish legs and her sloppy kisses and her temper and her curls. I need those toddler arms wrapped around me, ASAP. 

So, a short, busy vacation, but a good one.

Wednesday, April 9, 2014

One For The Baby Book

Scene: Lis races up to me, with something in her hand. I can’t see what it is, but she is really animated.

Lis: F#ck. You.
Me: (jaw drops open)
Vor: (jaw drops open)

Lis is obviously displeased that we don’t get it, and gets more insistent, waving her hands around.
Lis: F#CK. YOU. F#CK. YOU.

Me: Lis, sweetie…can you say that again? Can you show me?

Lis: (holds out a FORK and a SPOON) F#CK. YOU. (translation: Fork comes out Fuk, and Spoon comes out Ooo, with a soft n at the end).

Me, Vor: (fall to floor laughing)
Lis: (delighted at our laughter) F#CK! YOU! FORK! SPOON!

Tuesday, April 8, 2014

Toe In The Water, Part II

“Why don’t you switch gyms?” Vor asked. “The hours at the gym you’re going to now are horribly inconvenient for you. Go to the Y. It’s right next to your office!” So, Grace joins the Y.

(One week later)

We’re lounging on the bed, ipads and laptops and papers and books all cluttered everywhere. It’s the life of two lawyers—your child is asleep, so you hide in the bedroom and steal time together, quietly, so that she doesn’t wake up. You laugh and work, argue and read amusing or thought provoking passages from books to each other and argue some more. The dog takes up more than his fair share of the bed, but it’s chilly—we have the window open, hoping for spring, and he’s keeping my feet warm, so I don’t care.

“Is that the gym class schedule?” Vor asks, leaning over and taking it. “Wow, they have lots of programs!” He turns it over, then hands it back, thoughtful. “There’s a synchronized swimming class.”

“I know it,” I tell him. He’s still silent, looking at me with his head slightly cocked to the side. I know how well he knows me, because he picks up his latest treasure from the used bookstore—a book of essays—and starts reading. He’s decided to wait me out. I fidget with the class schedule. “It might be fun,” I venture.

“You were kind of obsessed last time,” he says, without looking up. Still waiting me out. He’s not going to engage until I actually say it. “It was the best exercise I’ve ever had,” I offer. Maybe that will be enough. “Obsessed,” he responds. “Yeah,” I sigh. Obsessed doesn’t cover it.

“Don’t you think it would be a little…boring?” He asks. It’s my turn to cock my head. “It was many things to me,” I tell him, “but it was never once boring.” “No, no,” he says with a laugh. “I mean that you are way above that level.” He sets the book down, and stares at me. Say it or not Grace.

“No. It wouldn’t be boring. And I—they—we could adjust to whatever level I am at. They’re good coaches. It would be fun. To do that, just for fun, just for the creativity, just for myself, with no hope or desire to compete.  For once, I would like to do that.”

Vor smiled and leaned over, kissed me. He’s got great, generous lips. “Then sign up”, he tells me, and picks up the book.

Later, I went up to Lis’s room to check on her before going to sleep myself. She’s burritoed herself in a blanket, with her stuffed animals standing silent watch over her. Her hair is curly from her bath, and her hand is tossed carelessly out to the side, palm out, as if she is a supplicant even in her sleep, asking for anything, and everything. Or, maybe she is my sovereign, and her palm out is her gesture of acceptance and an offer of love. Maybe it’s both.

My own mother was a national level athlete in her own weird sport—racquetball. She was also a phenomenal volleyball player, and a softball player, and taught me how to play both. I loved to watch my mother play her sports. She could be a shy, timid, subservient woman, but god, when she was playing her sport, she was suddenly taller and completely confident. She could be ruthless, this gentle woman, and she took no shit from anyone. She was clumsy in the kitchen, and once fell off the driveway (how do you fall off a driveway?) but she was grace itself with a racquetball, or a volleyball, or a softball.

I think I would like Lis to see that in me, so that she can find it for herself, if she wants it. That I can be, and often am, quiet and thoughtful. I prefer to avoid conflict and get people to work together. But I also want her to see that I have a reserve inside me that I can draw on when I need it, that allows me to compete and win; that I have skills on which I worked for years in order to make a national name for myself; that I can be aggressive, towards myself or towards others, when I have a goal to meet. I know I can show her this in the courtroom, as a lawyer.

I want to show her this in the water; I want to preserve this part of myself; I want to show her how strength and beauty, joy and determination, happiness and pain can combine into one person. It never has to be one or the other. It can always be both. 

Sunday, April 6, 2014

MILP #341

Kate has it.

Toe In The Water


I swam competitively as a a speed swimmer from kindergarten until second grade. Then, I found synchronized swimming, and I swam competitively in that from second grade until my junior year of college. When I say I swam competitively, I don't mean for giggle. I was full out hard core. I swam at least 3 hours a day, four days a week. I worked out on days I wasn't swimming. I swam division 1. I used to cheerfully joke that I could drown you and keep you company while I did it. I probably could have, too. I have several boxes packed with medal and ribbons, some of them being national titles, and titles from US Opens. I loved it. I breathed it. When I didn't love it, it was still my life substance. How do you live without air? How do you live without blood? You don't.

Then, one day, I walked away.

It's hard to say what did it. It's a thousand things, none of them individually accounting for it. Some are good real reasons--it was interfering with my school work, I wanted to become a lawyer, I needed lots of time to study for the LSAT, I changed my major and I needed all the spare time I could find to take seven or eight classes a semester. Some are terrible, terrible, reasons: a boy. A stupid, abusive boy at that, but let's not talk about THAT.

Some of the reasons are neither good nor bad: I just couldn't anymore. The thought of hurling myself into a pool at 5:15 am had become repellent. I dreaded every moment of practice and competition. I had spent the summer in Ireland, and I didn't once get in a pool, which was a first for me. It had been the longest I had been away from a pool since I was in kindergarten. It was the happiest I could remember being. So I left.

I should have done it better. I know that now. I left the team in a lurch, but god, I just couldn't bear to live with myself one more day as a synchronized swimmer. It's been years since I've been in a pool. Sure, I've waded into to play with babies and kids. But I have done a single synchronized swimming move, I haven't gone under water, I haven't put on a cap and goggles and swam.

I took Lis for her first swim lesson yesterday. You already see where this is going, right? I'm like an addict. We got in, we splashed around, we sang songs, stuck our faces in the water, gave the instructors high fives.

And there they were--the synchronized swimming class. They were over there in the other section of the pool, and it was like a fist to my gut. I had to drag my gaze back to my daughter, away from them. It wasn't panic--it was sheer jealousy. I was in the water, studiously keeping my hair above it, like a good suburban mom who likes to sunbathe more than swim, like one who has no idea of the clarity of sound beneath waves. They weren't too bad, and I could tell their coaches knew what they were doing--probably girls form the local team. It's a really good, and it had just broken onto the national scene when I was leaving high school.

Part of me was screaming. You could go over there. You could SHOW them HOW IT'S DONE. But hell, I haven't done that in years, YEARS now. Could I really show them how it's done? Would my body respond the way my brain commanded it to? Probably not. That's a painful thought.

Just playing in the water with Lis was wonderful. I didn't feel that sense of dread, the burnout that I had felt all those years ago. Instead, I was gliding around with her having fun, something I can barely remember doing.

Would it be fun now? Would it be fun to join the Y and put on a cap and goggle, go swim some laps? I can imagine gliding under water again, watching the sunlight stream in, though fractured and waving. I can taste the silence--it's wet and heavy. I can feel the chlorine--it's gritty and makes my skin taut. Could I get in the water without gravitating towards the class? If I did, would it be so bad?

...What if I did go over there? What if I just...signed up? For a synchronized swimming class? Like someone who is interested, but has never done it before? It's that me, wanting to brush up? To reconnect? It was the best exercise I've ever had--physically and mentally challenging. It would be a cool skill to keep. Or is it something more sly, like wanting an ego boost? Because even if I am rusty, it's likely I would blow everyone else away, and get my ego stroked for being awesome. God, just listen to me. Stop. I don't know.

But I'm thinking about it.