Tuesday, February 26, 2008

The conversation

We're cautiously emerging from the protective yolk of winter. It's an "oooh, it's so cold, big toenail in the water, arms folded across our chest" emergence. But it's a step away from hibernation.

That's fantastic. It's what we've waited for all winter. It's also an adjustment.

As we mentioned in the beginning of December, Hope's floppy windpipe, or laryngomalacia, makes it imperative that she avoid catching colds. That could complicate breathing and hospitalize her -- and meant staying inside during flu season except doctors' appointments. So it's been three months of (a) staring intently into each others' eyes and whispering "No, I love you more" (b) sharing conversations and dreams so soul-stirring they'd make even the Sisterhood of the Traveling Pants gag and (c) watching a lot of TV.
Amazingly, that gets old after 100 days.

So we're ramping up our bravery and venturing into the outside world. About a month ago, we took up Mo's parents, Clem and the Big Beef, on their babysitting offers. Then, last weekend, we sneaked out Hope out for short spurts: Furniture shopping; small errands; church; the post office.

It's nerve-wracking. We worry about Hope catching something. We fear she is going to wake up screaming. We move with caution, knowing the conversation lurks with every stranger.

"She's so tiny!"

Mo's heard it for months at doctors' offices. I'm just starting to encounter it. It's nice that it's often accompanied with "She's so adorable." But it soon leads to awkward conversations. Neither Mo nor us quite know how to respond. Hope is tiny. But she's also gorgeous, a snuggle-puppy, sensitive soul and, like her Dad, an occasional grouch. Her size isn't who she is.
But that's usually where the conversation goes.
"She is just so tiny! I'd be afraid to touch her!"
We know people take their cues about Hope from us. Like most parents, we love the chance to brag up our kid. We'd just rather not do so at La-Z-Boy -- or launch a conversation about genetics while juggling a can of peas and the car seat.
On the other hand, we don't want to seem rude. So we've tried the simple ("Yes, she is tiny!") and the subtle ("That's how she's supposed to be!) We've also mulled the evasive ("She is small. And she has lovely eyes!) and the sarcastic ("Really? Are you sure?")

Alright, that last one is me.

The next question is inevitable: "Is she a newborn?"

Its variant-- "Is she a preemie?" -- is easier. Technically, Hope was born at 37 weeks. Morally, answering in the affirmative is a bit misleading.

So Mo usually smiles and explains that Hope is almost four months old and has health issues that make her small. That usually ends the conversation, which is understandable but also sad.
So we're searching for the perfect rejoiner. It needs to be one that conveys (a) how much we love our daughter (b) how she makes us proud (c) acknowledges that we realize she doesn't look like babies her age and (d) politely signals that we'd rather not elaborate for the postal clerk.
We've already determined that Hope will have as normal a childhood as possible, so it's a conversation we'll need to get used to. Like a lot with Hope, it's an adjustment, but worth it.

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Karen said...

We're still looking for a good response to all those questions and comments, and we're still adjusting nearly 2 years later. For us, Ben's little right arm gets at least as many comments and questions as his small size. I know what you mean about not wanting to get into a detailed discussion about genetics while out running errands.
In any case, I generally prefer friendly comments and questions to rude stares.

Sonia said...

We got those exact same comments when Natalia was born and people are still curious about her size/age. At first it bothered me that everyone focused on that and not how beautiful she is too. People also stare because her facial features are so different, and she has a bit of a moustache (hirsutism). The only comment we’ve gotten on that came from to two 4yr olds at the mall. They saw Naty and said, in a very non offensive way “look, baby moustache” to what I was first taken aback and then just turned to my husband and laughed. I doubt an adult could have made that same remark without it feeling offensive to us. Naty has missing digits in her hands as well, and remarkably no one has ever made negative comments to us on that (that we’re aware of). I’m usually torn between raising awareness about the syndrome or just nodding, smiling politely and going my way. The second is what I usually do but am working on raising awareness, although I agree that Walmart is not a comfortable place to do that. 

Brooklyn Salt said...

Selfish me, I never thought about how strangers would react.

When people say to me, "Sam looks like you," which, unfortunately, he does, I reply, "actually, he looks like Sam." What I'm trying to get at is Hope looks like Hope is supposed to look.

As a marketing guy, it seems like you need to craft some "talking points" for these questions.

I really love the fact that Karen and Sonia have posed their experiences. I hope that helps. It helps me better contextualize what you, Mo and Hope are dealing with right now.

By the way, have I mentioned how awesome you guys are lately? If not, my bad!

Misty said...

i am going through that same thing here...we get the most comments on Mason's nose. at first people talk about how cute it is, but i notice them looking at him and curiously back at us after a few minutes and it is a little akward to say the least... and of course the hair and his low cry...i'm never sure how to respond when people comment on these things,and i hate doing it at a store. i like what brooklyn said about when people talk about sam....i think that i will tell people that mason is mason and maybe add a little info about cdls as sonia has done when i feel it necessary. your posts always explain to a tee what i am feeling or questions that i'm having. reading your reactions and those of others is comforting and helpful.
thank you!!

Joel and Maureen said...

Hey: Thanks to all you guys for your wisdom and advice. You're all great! We're glad we found some cyber-support.

Christy said...

I know it is cliche to say this, but if we had a dime for everytime someone asked us if Baylee was a preemie, we'd have been out of debt a long time ago and I'd be sleeping in every day instead. When her bigger little brother came along 18 months later, we got the "are they twins?" question almost as much. Nope...the bigger one is younger. The "Look at that babies hair!" comment was another one we heard over and over and over....

Baylee is now 11 and I had all but forgotten those days until I read your blog entry and all the memories came rushing back! They aren't bad memories, and I can look back and smile about our experiences now. Most people are well meaning, so most of the time we were willing to give them a pass.

We eventually got to the point where we were quite open about CdLS. If someone commented on how tiny she was or asked if she was a preemie, we just told them that she had CdLS, and gave them a little education about it whether they wanted it or not.

Always, always keep your sense of humor....it will get you through just about anything!